Disability Key Blog

In your journey toward financial independence within the confines of your disability, it's good to get assistance from someone who has not only the technical expertise, but the real disability experience. One without the other is simply not enough. It's the objective of DisabilityKey to merge this expertise and experience into one comprehensive package designed to help you regain control of your life, your illness, and your future.

Name: Carolyn

I am a mid-50's person who REALLY loves helping others help themselves!

Tuesday, June 02, 2009

I'm BACK!!

I've been away for a good long time, actually WORKING WITH over 4,000 folks with Disability Insurance questions WORLDWIDE!

AND, the GREAT news is that for those who follow the process rigidly, our success rate of 1st time approval EXCEEDS any other Disability Advocacy entity that I have seen online or have heard of.

So, please come aboard for the journey, and be SUCCESSFUL!


Tuesday, May 01, 2007

READ; Join if you have MS: cMSc; Consortium of MS Centers

This website is FANTASTIC.

#2, below, shows how to actually enroll into this Consortium, take a 30 page questionnaire, and continue to research YOUR TYPE of MS, like 31,800 other MSers have.

#2 post: Here's the link on this forum to the PATIENTS' REGISTRY page:


On this page, the 4th bullet on the left side is the link to Enrollment; you can join and complete the 30 pg Q.

The 3rd bullet is the link to current and past articles within the issue of MSQR: MS Quarterly Report.

#1 post: During my research on Health Care Provider Education, I found this fantistic website: Consortium of MS Centers.

I joined, and got access to what's available. Here are links to various locations within this very valuable website:

Home Page for cMSc: Consortium of MS Centers


How to apply for SSDI
Meet the Experts’ articles


Past (and current) issues of the Journal of MS Care


Good luck!!!

Please let me know if you visit, and if you find anything of interest!!!


Sunday, April 01, 2007


I've been developing an Educational document for nurses who work with Chronic Disease patients, and came accross a fantastic MS website called: Consortium of MS Centers.

Here are some links within this website. If you access it, and find anything of interest, please comment!!!

Home Page for cMSc: Consortium of MS Centers


How to apply for SSDI
Meet the Experts’ articles


Past (and current) issues of the Journal of MS Care


Thursday, March 29, 2007


In addition to my website and my moderating functions on the http://www.butyoudontlooksick.com "virtual village" website, I'm also a Question Answerer on YAHOO.

Here's an answer that I just gave to someone wanting to know, basically, if someone can actually HAVE a qualify live after age 50 with a chronic disease (in the asker's case, the disease is MS). Here's what I said:

Well, I guess that I qualify!! I'm 58 and have been successfully managing the myriad symptoms of MS for over 45 years!!!!!! AND, I have to say - with NO QUALIFICATIONS - that my quality of life is far better now than it was in my first 50 years of life!!!! I currently use whatever "daily active hours" I have (about 3 each day) as a passionate and aggressive Disability Advocate, Educator, and Expert Witness!!

Here are my qualifications for this statement:

1) I was an HR Executive for over 30+ years before i went on full disability.

2) When it became obvious that I needed to go on disability - and, having been a Federal "Personnel Auditor" for the first half of my professional career - I put together a process and used it, that got me approved for Long Term Disability and for SSDI the first time around in under 30 days, the first time around!!! AND, it usually takes over 3 years to get approved!!

3) Having been sccessful myself, I documented my process and created a DisabilityKey Workbook - over 100 pages of forms and actual examples. Tthen, created a website with tons of free stuff on it for folks with MS and any other type of disease: http://www.disabilitykey.com

Within this website, you can find my blog with over 80+ entries. Tons of info on: Chronic Disease Self-Management; Expert Patient; and, Patient-Centered Health Care.

4) Since 2000, I've been working locally, nationally, and worldwide to assist people with disabilities better document, corroborate and communicate their symptom impairments, to empower them to self-advocate for themselves and acquire the resources they need to attain the optimum quality of life for themselves.

My website has free ebooklets for download on: triggering ADA while working with a disability; why someone is denied SSDI; and Self-Advocacy.

5) I work closely with the local chapter of the Natn'l MS Assn and offer free quarterly seminars, and meet with folks face to face every other Monday for 2 hours. I've also been priveledged to address MS patients and their caregivers for local health care networks, and am currently working on educational tools to instruct health care professionals on how better to assist folks with disabilities.

6) Since March of 2006 I've been very active as a Moderator on the "virtual village for folks with autoimmune diseases" website: http://www.butyoudontlooksick.com...

I moderate the Work Related, Social Security, Baby Boomers and MS Forums.

7) I've been answering questions here on this forum for a while now.

8) Through all these resources, I've been able to provide info to approaching 1,5000 folks with disabilities, and those who actually take the time to follow the process have been successful in their endeavors.

So, please take a look at my website and the "virtual village". Join within the virtual village and ask questions about "life after 50 with any autoimmune disease" - not just MS!! You'll find that our similarities far outweigh our different illnesses/conditions!!

Hope that this helps!! As you can probably tell, attitude is a key component in success.

Good Luck, and hope that this helps!!!!!

Tuesday, December 19, 2006

About Carolyn Magura

Carolyn Magura is a pro-active advocate for assisting people with disabilities learn how to advocate for themselves to receive the care and financial assistance they qualify for and need. She also helps people with disabilities learn to help themselves through better life and symptom management. Her expertise has been gained through a combination of 35+ years as a Human Resources Executive, and through 45+ years as a Multiple Sclerosis survivor.

Carolyn has turned her successful process into a “How To” Workbook. This Workbook contains not only the step-by-step process to file for Long Term Disability (LTD) and SSDI, it contains the actual forms and letters that she used, as well as blank forms and letters that anyone else can use for themselves. Roughly 60% of all SSDI claims are rejected on the first attempt, and 80% of those are rejected at the Reconsideration stage. With Carolyn's workbook, your odds can be greatly improved. The process Carolyn discusses in her workbook is the same one she used to become the first person in the State of Oregon to receive Social Security Disability Insurance (SSDI) on the first attempt and in less than 30 days.

In addition to the Workbook, Carolyn is dedicated to working with others as they use the Workbook for themselves. After being misdiagnosed for many years, Carolyn’s Multiple Sclerosis was conclusively diagnosed in 1997. She tested her process on herself, first. She then appeared on numerous local television shows, and was published in local articles and magazines about her successes. In June of 2003, she was published as a Mentor in BIOGEN’s Avonex Alliance news magazine, explaining her process to others.

Click on the link below to receive Carolyn 's easy-to-read,
easy-to-follow guide through this difficult, trying

Click Here To Download Now

Monday, December 11, 2006

Need A Disability Lawyer/ Attorney?

Need to talk to a disability lawyer / disability attorney? Disabled due to mesothelioma / asbestosis, vioxx, celebrex, bextra, or an accident covered by workers' compensation insurance? Try Legal Match to find
a lawyer / law firm to get a disability or employment attorney to represent your rights in a court of law.

Why, you may ask, should I get and pay for an Attorney? Many sources about Disability Attorneys say that the process for filing for SSDI (Social Security Disability Insurance), SSI (Supplemental Security Income), and even LTD (Long Term Disability Insurance) might as well be "secret" based on the clarity of information provided! Some of the research indicates that a Disability Attorney will increase your odds of success by 50%.

Now, why do we suggest a Disability Attorney and/or an Employment Attorney? Well, it all depends upon your need. The need for an experienced attorney to assist you can be in many ways including, but not necessarily limited to, the following:

  • SSDI
  • SSI
  • LTD
  • Workers' Compensation Insurance
  • ADA (Americans with Disability Act) cases for termination, failure to hire, and other discriminatory acts
  • Discrimination on the job because of a disability (ADA also)

There may be others, but your search will allow you to identify the best Attorney for your situation.

Good Luck!

Wednesday, August 09, 2006

Relationship between MS and Bell's Palsy?

Q: Is there a link between MS and Bells Palsy?

A: Yes, there CAN be a connection between MS and Bell's Palsy. In MS your own immune system attacks the mylin sheath covering your nerves. If this occurs within your brain, part of your head - the skin - could feel numb - like Bell's Palsy, or you could feel tingles upon the skin of your head.

If you are diagnosed with Bell's Palsy, it wouldn't hurt to ask your Dr. about checking you for MS.

To learn more about how to document your symptoms better, please see my website: http://www.disabilitlykey.com.

Personal experience. I have had MS for over 45 years, and I have also had Bell's Palsy.

Tuesday, August 08, 2006

Mayo Clinic Symptom Checker

Q: I have lots of symptoms, but don’t know how best to discuss them with my doctor. Can you give me some help?

A: I subscribe to a monthly "e-letter" from the Mayo Clinic. In this August's e-letter, the "Tools for Healthier Lives" section contained a specific tool that I thought might be of great interest to those looking to better communicate with their doctors!! Under the category "Diseases and Conditions", the Mayo Clinic offers a SYMPTOM CHECKER.

Here's the link to this tool:


Here's what the introduction to this guide says:

"Use this guide to discover the most common causes of the most common symptoms." The list is split into one for Adults and one for children.

The guide further cautions that it is a Guide only; that you should work with your doctor for an accurate diagnosis.

When you click onto a "condition" you are taken to a page where you can identify symptoms and other information about the specific "condition". Then, on the right side of that page, you'll find a list of "situations" where the Mayo Clinic states that if you have THIS, see your doctor entitled "When to seek medical advice".

To provide you with an example, I selected the condition "Numbness of tingling in hands". The next page allowed me to select from the following categories:

* Symptoms
* Triggered by
* Relieved by
* Accompanied by

Based on my selections, I was taken to the next page that offered me a choice of 5 "possible causes" of my symptoms:

1) Peripheral Neuropathy
2) Pinched nerve
3) Carpal Tunnel Syndrome
4) "football stingers"
5) Stroke

In this way, I can copy my symptoms and what might be the possible causes and take the info to my personal doctor and ask for clarification.

Hope that this helps some of you!!

Sunday, July 02, 2006

RFC/PCE (Residual Functional Capacity/Physical Capacity Evaluation ) What is it; Why is it Important?

RFC/PCE (Residual Functional Capacity/Physical Capacity Evaluation) What is it; Why is it important?

This document is an assessment process by either your doctor or the Insurance company's doctor, of your current and PROJECTED normal daily living activity abilities. It is important to understand this concept; it is the primary reason why folks' Social Security claims are denied.

Disability Insurance companies - like SS, pay out because the person has lost income, because they can't work; and, they can't work because their symptoms impair (keep them from) doing the activities of their job, and of their daily life.

To give you a better understanding of this process, please go to the Downloads and Articles link within the www.disabilitykey.com website. Here is that link: http://www.disabilitykey.com/downloads.htm

The RFC/PCE example available here for you to donwload FOR FREE, is my actual, sanatized form. I provide it to you as an example to supplement your Disabilitykey Workbook.

Best of luck in completing your own form with your doctor.

Saturday, July 01, 2006


Just like there's confusion over the difference between SSDI and SSI, there's confusion over the difference between Medicare and Medicaid.

So, here in a nutshell, is the definition of each.

Medicare - the very same health plan that retired people over 65 enjoy - can be obtained after receiving SSDI for 24 months. (NOTE: ONCE YOU QUALIFY FOR SSDI, YOU HAVE TO WAIT FOR 29 MONTHS BEFORE RECEIVING YOUR FIRST CHECK.) Medicare has two parts: Part A, which you pay for through your payroll taxes, and which covers overnight hospital bills, hospices, home health care and very limited, partial nursing home care. And Part B, three-fourths of which is paid for by federal income tax, and one-fourth ($84.00 a month in 2006, deducted from your SSDI check) by you. It pays for doctor, ambulance, emergency room, clinic and most other outpatient care (except drugs and nutritional products).

As of May 15th, 2006, Medicare now has a Part D which covers partial payment of prescriptions. Most people who qualify for Medicare select a "Supplement" package that covers additional things such as Doctor visits (minus the co-pay) and other things usually covered by a Health Insurance Plan. You have to pay extra for this. If you become eligible for Medicare after May 15th, 2006, you have to select a carrier for Part D. This can be included in your "supplemental" package, as mine is, or it can be a separate coverage.

Medicaid is run by the state and local governments. It completely covers hospitalization, clinic visits, emergency room visits, doctors' visits, hospices, home health care, nursing home stays, ambulance and outpatient prescription drugs. Medicaid has very small co-payments for prescriptions, doctor visits and some other care. While all hospitals and almost all drug stores accept Medicaid, most doctors don't, and many home health agencies, nursing homes, and hospices are also reluctant to accept Medicaid. People on SSI are eligible for Medicaid, and in most but not all of the states in the nation, SSI sends lists of recipients to the local government, which then automatically sends Medicaid cards out to them. But in some states, you must always apply separately for Medicaid at the welfare office, even if you're on SSI.

It's possible - indeed, sometimes it's absolutely necessary - to be on both Medicare and Medicaid. In that case, Medicare first pays medical bills up to whatever its rules allow, then Medicaid pays the rest. Always get Medicaid, if you can, to supplement Medicare, because with it, you'll have a way to pay deductibles and co-payments that you would otherwise face without it. Moreover, Medicaid pays for some things Medicare doesn't cover at all. Conversely, always get and keep Medicare (including Part B) even if you are already on Medicaid. Medicare pays doctors and hospitals more than Medicaid does, and therefore will make them more likely to accept you as a patient and devote adequate time to your case. Don't be afraid of the Part B monthly premium, either. Once you're on Medicaid, it will start paying the Medicare premium for you, and your SSDI check will go up by $84.00.

According to the Social Security Administration some assets are considered exempt (not countable) toward SSI eligibility such as:
• The house an individual lives in and the land it is on;
• Personal and household goods (depending on their value);
• Life insurance with a face value of $1,500 or less;
• Burial plots or spaces for the individual and immediate family; burial funds for the individual;
• A car with a current fair market value up to $4,500. The car may be of any value, however, if it has been modified to accommodate a person¹s disability or if it is needed for necessary activities.

Some of an individual¹s income is also not counted toward SSI eligibility such as: The first $20 of most income received in a month (from any source); the first $65 a month earned from working and half the amount over $65; food stamps; most food clothing and shelter from non-profit organizations; most home energy assistance. If the individual with a disability works, any wages used to pay for items needed for work related to the disability are not counted as income. (Source: Social Security Administration.) Since eligibility for government benefits is dependent on these financial restrictions, a person with a disability would be in jeopardy of loosing those benefits if he or she amasses any resources above the limit.

Sunday, June 25, 2006


SSDI versus SSI

I have had, and continue to have, numerous questions about the difference between SSDI and SSI. Summarized below are the key differences.

The SSDI and SSI programs are the largest of the Federal programs that provide assistance to people with disabilities. Generally, the medical requirements for disability eligibility are the same under SSDI and SSI programs, but the way these programs are funded differs.

The SSDI program is funded by the Social Security taxes paid by employed individuals. Therefore, the SSDI program is based on a person’s work experience. The SSI program is funded by general tax revenues and pays benefits to people with disabilities who have limited income and assets, and is based on a person’s financial need.

SSDI: Social Security Disability Insurance is an insurance program that sends out monthly checks to disabled workers who have paid Social Security taxes (called "FICA" on your paycheck stubs). You must have worked for at least 5 of the past 10 years before you apply to be "currently insured", or covered, but the minimum time is less if you're under age 31 when you become disabled. The amount you get depends upon how much you have paid in taxes and for how long, since SSDI is an insurance - not a welfare - program. In general, the higher your earnings have been and the longer you have earned them, the higher your SSDI check will be. Benefit amounts vary from a low of about $200 monthly to a high of about $1,600; the average SSDI check is about $850, but this average does reflect low wages paid in the South, in rural areas, and in small towns.

SSDI checks start at the end of the fifth month after the "date of onset," the day you became "disabled" under the Social Security rules by meeting the medical rules as well as not engaging in substantial gainful activity ("SGA”). The number of work credits you need for disability benefits depends on your age when you became disabled. Generally you need 20 credits earned in the last 10 years ending with the year you became disabled.

However, younger workers may qualify with fewer credits. The rules are as follows:
• Before age 24—You may qualify if you have six credits earned in the three-year period ending when your disability starts.
• Age 24 to 31—You may qualify if you have credit for having worked half the time between age 21 and the time you become disabled. For example, if you become disabled at age 27, you would need credit for three years of work (12 credits) out of the past six years (between age 21 and age 27).
• Age 31 or older—In general, you will need to have the number of work credits shown in the chart shown below. Unless you are blind, at least 20 of the credits must have been earned in the 10 years immediately before you became disabled.

Born After 1929, Become Disabled At Age Credits You Need
31 through 42: 20
44: 22
46: 24
48: 26
50: 28
52: 30
54: 32
56: 34
58: 36
60: 38
62 or older: 40

The easiest way to check your financial eligibility is to request a Summary of Earnings and Benefits. You can obtain a request form as well as apply on-line at http://www.ssa.gov/howto.htm and click on: “How To Request a Social Security Statement of Earnings and Benefits.” You may also obtain a form to request the Statement at any Social Security office and most post offices. Ask for: “Request for Social Security Statement (SSA-7004).”

SSI: Supplemental Security Income is a welfare program for disabled people who meet the Social Security medical and SGA disability rules and whose income and assets are below the eligibility levels. SSI allows assets of $2,000 liquid; a separate bank account of up to $1,500 for "burial"; a vehicle of any value, if used to go to medical care; household furnishings; certain self-employment business equity and equipment; and a lived-in home of any value. The SSI income level in 2002 is $545 per month (but it's higher in most wealthy industrial states, which supplement this amount). All gross income counts against this level: SSDI, earnings, pensions, gifts, contributions, bank interest, dividends, veterans' benefits, etc. If your SSDI check is below the SSI level, you can get SSI as well as SSDI. Before comparing gross income to this level, SSI disregards (i.e., doesn't count) $20 per month of any income, out-of-pocket Impairment Related Working Expenses (IRWEs: medical costs you pay to enable you to work) and $65 and half the rest of any earnings. If the resulting countable income is above the SSI income level (again, $545 in most---but not all-- states), you're not eligible. If it's computed to be less, you get an SSI check for the difference between your countable income and the SSI level - and, as a "fringe" benefit in most but not all states, a Medicaid card.

SSI—This is known as Title XVI (16) Supplemental Security Income. This program is for people who either:

• Have not paid enough quarters (earnings) into Social Security for any reason.

• Have limited resources and income.

Although you must be disabled according to SSA’s definition, you must first meet SSA’s strict resource eligibility test prior to your medical condition being considered. If your resources exceed SSA’s limit, you cannot collect SSI irrespective of your medical disability.

Saturday, June 24, 2006

Do You Qualify For SSDI???

The Social Security Administration has provided this online "test" for people to use so that they can decide for themselves if they are eligible.



Friday, June 23, 2006

The Sad and Untimely Demise of Captain Richard (Dick) Head

Before I went onto full time LTD and SSDI, I had my DREAM job. I was the first female part owner/VP Human Resources for an American Ship Repair Yard. We employed over 2,500 employees; 24/7 operations; 11 unions, and lots of turmoil!!!

My agreement with the Managers who fixed ships was simple: I did people; they did big metal "things".

It was a rainy Wednesday, end of October night - around 8:00 pm. We had a ship in for repair with an English Capt., Head, and his wife aboard (they traveled the world together). They were out for a stroll, and, for whatever reason, were walking down the middle of the one way street leading out of the Ship Repair Yard. 8 pm is "lunch time" for Swing Shift; and, they only get 30 minutes.

A young man working in the Yard for a Contractor came tearing out of the yard going way over the speed limit, trying to drive while wiping the windshield. He felt a thud, and stopped the car - only to discover that he had hit and, regretably killed - Capt. Head. I got a call at home about 3 am to come into the Yard and "deal" with the situation, since I did "people". I came in, dealt with the police, the grieving widow, the hospital, etc. Got the widow into a downtown hotel; contacted her family in England and arranged to get them tickets to fly over to stay with her; went home for a few hours of sleep.

Now remember, the customer is always right. So, the next day, Thursday, I met with the family, and the widow wanted to have an open casket, full Catholic Mass, Memorial Service, the next day, in the Yard, so that the Ship's company could say one last good-by to the Capt. I had already priced caskets, embalming, cremation, etc., and when I started to convey the information to the family, the "Ship's Representative" - our "customer" said: "They no pay; you pay!"

I thought OK, but I wonder what Accounting was going to think when they saw my next month's VISA statement wherein I charged a casket, embalming, and cremation onto it!!!!!

I leave the family; make arrangements with the Funeral Parlor to prepare the Capt. for the service the next evening - Friday - for a 6 pm service. Now, the only place within the Yard suitable for the service was a nice room off of our Company Cafeteria. And, the only door wide enough to accept a coffin was the one that would lead the coffin through the kitchen. So, I had to call the State Health Dept. to make sure that I wasn't violating any health codes by wheeling a casket through the kitchen (and I wasn't as long as the body was embalmed).

Now, that Friday, as luck would have it, was Halloween. And, remember this is a rough and tumble, grubby ship repair Yard!! Just years before the yard would host Halloween parties with an open casket filled with ice and booze! And, even though we were kinder and gentler now, I didn't want the Swing Shift to see a group in the all windowed room off of the Cafeteria with an open casket! So, we purchased and figured out how to hang drapes.

Then, I remembered that I needed to find a Priest! Took a while to find one at the last minute~ It is finally Friday, around noon. I panic, remembering that I don't have any appropriate "funeral Catholic Mass" music to play, and run to the nearest Mall's music shop. I ask for funeral music, forgetting, momentarily that it is Halloween, and the clerk tries to sell me the Monster Mash. I explain and get the correct music; get back to the Yard and get the room set up for the Service. Dash home to change clothes; dash back to the Yard, where I remembered that I had to pay the Priest for his services!!

So, I dash to Accounting and ask for a check made out to the Priest, and receive the wierdiest looks - until I remembered that not all folks working in the Yard knew about the upcoming Memorial Service.

Get back to the room; all arrive and the Service begins. Now, I hope you realize how serious an event this is. I had preped the Priest, that the Capt.'s name was Richard Head. But his family came from the UK, and they insisted in calling him, throughout the service by his nickname, Dick. I was horrified when folks in the service put the two names together, in "American slang", and started snickering. Well, we got through the Service; we had arranged for light food afterwards, and the evening ended, with all satisfied.

Observations: first of all, I challenge any other HR Executive to have this type of task to perform! Second of all, this is a True Story! Only in an American Ship Repair Yard can you have a full Catholic Mass Memorial Service for Capt. Dick Head on Halloween.

Monday, April 10, 2006

Disability & Quality of Life; Book Review "Thanks"

I'm sure that I've said it before, but, if not, I'll say it here. I am firmly convinced taht your attitude is a very key component both to your quality of life, and, to your ability to - in balance - effectively manage your Chronic Illness!

And, with this in mind, my advice is to develop hobbies. Within your hobbies, remember to share with others, especially the "guides" within your hobbies, your thanks for their input. For example: perhaps you decide that you want to become a great cook, and use Martha Stewart as a model. After you dook something, using one of her recipies and receive rave reviews from your "eaters", write Martha a thank you email or letter! It'll make both of you feel so much better.

For me, I love reading. And, when I finish a book that I really love, I go to the Author's website and let him/her know, and thank them. Most even write back! I even got an autographed "drink coaster" from one, and am going to be a "reader reviewer" of one of my favorite author's upcoming book, while it is in draft.

I've copied below the thank-you email that I just sent to an author so that you can see what one looks like. Hope you too enjoy a hobby and thank those who inspire you.

Dear Mr. Katzenbach:

Not sure why I just found you, but am soooo glad that I did! The Madman's Tale is the third book of yours that I have read, and just finished it. (Started with State of Mind, followed by The Analyst). Loved State of Mind; liked the technical structure of The Analyst, but thought it was too sad - he was soooo isolated - but REALLY LOVED THE MADMAN'S TALE!!

I am a voracious reader (I've been "managing" Multiple Sclerosis for over 45 years, and now find myself on full time Disability) particularly of books of intrigue. I find, however, that increasingly I need novels that keep me invested within the book. If the story is too predictable, it just doesn't "hook me".

You, sir, have a marvelous mastery of phraseology; your lyrical prose paints pictures so accurately that I found myself in the Hospital along with Lucy, Peter and Francis!! I have obtained, and will read next, Hart's War - the book, and not the movie. I want to view my OWN mental movie through your words!

Couldn't help but document, and share back with you, some of my favorite phrases from The Madman's Tale. These specific phrases were so eloquent; they so accurately depicted an emption, or a feeling, or, in the case of Francis, so clearly defined, in my humble opinion, (IMHO) SPECIFICALLY WHAT IT MEANS TO BE "HUMAN", that I couldn't help but let you know just how your words affected me! Your prose kept me reading EVERY WORD, and not just skimming to catch the thread of the story, hurrying to "who done it"!

Many authors can describe events, action, places and things, and some can capture the superficial quality of the characters. What I find unique about you, Mr. K., is your ability to capture the essence of each character's "ghestalt"; raison d'etre (sp?); unique personality; and, how each both taps into the collective humanity, yet stands uniquely apart from it.

1) pg 168: "When I think back, I can see so many little things that should have meant something....I was young, and I didn't understand that crime is like all the mechanical parts of a transmission. Bolts and nuts, screws and pins, all meshing together to create a self-contained momentum that travels forward, controlled by forces that are a little like the wind; invisible, yet leaving signs in a piece of scrap paper that suddenly takes flight and dashes down the sidewalk, or a tree branch being tugged frist one way, then the next, or merely the distant dark storm clouds scudding across an ominous sky."

2) pg 200: "We are all defined by the dark, I thought. Anyone can portray anything in the daylight. But it is only at night, after the world had closed in, that our true selves come out."

3) pgs 218 & 219: "Sometime later that day, or maybe after the next, but certainly at some point during the steady procession of mad folks being escorted into Lucy Jones's office, it occurred to me that I had never really been a part of something before.....As a child, not being able to join in is a terrible thing. Maybe the worst.....In all those years, I was never once invited to a birthday party. Never asked to a sleepover. Not once shoved into the back of a station wagon for an off-the-cuff trip to Friendly's for an ice-cream sundae. I never got a phone call at night to gossip about school or sports or who had kissed whom after the seventh grade dance.....My life was unique because of the absence of all those little things that make up everyone else's normalcy."
4) pg 269: "But that wasn't the real terrain of each housing unit. The contours and topography were really defined by all the variety of madnesses contained within." (Note: this one REALLY resonated with me, as I was a Human Resources Executive for over 30 years before I went on Disability. Whenever I walked into a room, I took deliberate "stock" of the temperature of the room; of the currents and eddies swirling around; of who was bouncing off of whom, etc. I've just never seen it articulated as you have done!)

5) page 326: IMHO, this is the depiction that separates someone like Francis who may be "crazy", yet is still humane, from a sociopath! I loved how you phrased it!! "All my life, all I wanted was to be normal. Even tortured, like Peter and Lucy were, but normal. Able to modestly function in the outside world, enjoy the simplest of things.....But I couldn't, because I knew, right in that moment, that I would forever be doomed to be closer in spirit and action to the man I hated and the man that scared me. The Angel was giving in and luxuriating in all the murderous evil thoughts that lurked within me. He was a fun house mirror version of myself. I had the same rage. The same desire. The same evil. I had just concealed it, shunted it away, thrown it into the deepest hole within me that I could find and cover it up with every mad thought, like boulders and dirt, so that it was buried where I hoped it could never burst forth."

In these few words, you clearly articulated the essence of "free will". AND, IMHO, just why God gave us humans free will. He wants us to control our baser, evil urges, and do what is "right" through choice, not through coersion.

You have succeeded in depicting the essence of being "acceptable"; of being acknowledged as a human being, with "rights" to exist. And, after all, that's what all humans live their existence for; simply to be acknowledged as existing.

Well, I've taken up too much of your time. If you want to use my words as a review of your book anywhere, please feel free to do so.

Also, if you ever need to a reader to read an ARC of your new book(s), I'd be delighted to do so.

THANKS, again, for many enjoyable hours! I'll probably be writing you again after I finish Hart's War!

Thursday, April 06, 2006


The following list of 8 dimensions of Patient-Centered Care constitute an update on the series of blogs posted last summer.

NRC and the Picker Institute have merged, and are working with Hospitals and Medical Clinics with a "Customer Satisfaction" survey. The purpose of the survey is to assist the participating Medical Facilitly transition from the current style of "Illness or Doctor Centered" care into Patient-Centered care, based on the 8 dimensions listed below.

Now, here's where I need your help. There's a possibility that I may get the opportunity to address Doctors and Health Care representatives as a Patient Advocate, explaining to them the problems that current patients have communicating with their doctors - particularly patients with Chronic Conditions.

So, as you read the 8 conditions listed below; as you go to the website links, please comment back to me with information that you might have to help Doctors and Health Care representatives better help you!!

Here's the link to the actual website wherein the following data appears.


Eight Dimensions of Patient-Centered Care

Respect for patient’s values, preferences, and expressed needs
Patients indicate a need to be recognized and treated as individuals by hospital staff. They are concerned with their illnesses and conditions and want to be kept informed.

An atmosphere respectful of the individual patient should focus on quality of life.
Involve the patient in medical decisions.
Provide the patient with dignity, and respect a patient’s autonomy.

Coordination and integration of care
Patients report feeling vulnerable and powerless in the face of illness. Proper coordination of care can ease those feelings. Patients identified three areas in which care coordination can reduce feelings of vulnerability:
Coordination of clinical care;
Coordination of ancillary and support services; and
Coordination of “front-line” patient care.

Information and education
Patients express a fear information is being withheld from them and staff is not being completely honest about their condition and prognosis. Based on patient interviews, hospitals can focus on three communication items to reduce these fears:
Information on clinical status, progress and prognosis;
Information on processes of care; and
Information to facilitate autonomy, self care and health promotion.

Physical comfort
The level of physical comfort patients report has a tremendous impact on their experience. Three areas were reported as particularly important to patients:
Pain management;
Assistance with activities and daily living needs; and
Hospital surroundings and environment.

Emotional support and alleviation of fear and anxiety
Fear and anxiety associated with illness can be as debilitating as the physical effects. Caregivers should pay particular attention to:
Anxiety over physical status, treatment and prognosis;
Anxiety over the impact of the illness on themselves and family; and
Anxiety over the financial impact of illness.

Involvement of family and friends
Patients continually addressed the role of family and friends in the patient experience, and often expressed concern about the impact illness has on family and friends. Family dimensions of patient-centered care were identified as follows:
Providing accommodations for family and friends;
Involving family and close friends in decision making;
Supporting family members as caregivers; and
Recognizing the needs of family and friends.

Transition and continuity
Patients often express considerable anxiety about their ability to care for themselves after discharge. Meeting patient needs in this area requires staff to:
Provide understandable, detailed information regarding medications, physical limitations, dietary needs, etc.;
Coordinate and plan ongoing treatment and services after discharge; and
Provide information regarding access to clinical, social, physical and financial support on a continuing basis.

Access to Care
Patients need to know they can access care when it is needed. Focusing mainly on ambulatory care, the following areas were of importance to the patient:
Access to the location of hospitals, clinics and physician offices;
Availability of transportation;
Ease of scheduling appointments;
Availability of appointments when needed;
Accessibility to specialists or specialty services when a referral is made; and
Clear instructions provided on when and how to get referrals.

Monday, March 27, 2006

Preparing to see a Social Security Doctor

I have recently been asked about preparing to see a Social Security Doctor who will conduct an examination to determin the applicant's eligibility for SSDI. This can be a scary proposition; also, if you do not take control of the situation upfront, your chances of success GREATLY DECREASE!!!

Here are some tips to increase your chances of using this situation in your favor of attaining your SSDI eligibility.

When they tell you that they want you to see their Dr. it means that, for whatever reason, the information from your own personal Doctor was not sufficient for them to determine whether the SYMPTOMS of your illnesses impact your daily living activities to such a degree that you cannot perform work in some capacity, given your education, training, work history and age that will pay you more than the monthy qualifying amount ($860/month currently).

It also means that you probably did not follow the process outlined in the DisabilityKey Workbook, acquired at the www.disabilitykey.com website. So, let's see if we can help you play "catch-up".

Here are the links to the Social Security form called Residual Functional Capacity. The first is an explanation of how it is to be filled out. The second is to a copy of the actual form.



In a nutshell, the Social Security Administration needs to have evidence - preferably your Doctor(s)' chart notes and the results of any and all objective tests completed on you - that will allow them to complete this form about you. If they don't have it, they will send you to their Dr to get it.

In a perfect world, you would have taken this form into your own personal Doctor AHEAD OF TIME and completed it with him/her, and provided it to SSA with your application (that's what I did, and what I advise folks to do).

To see an actual example of a type of this form completed, check out the articles portions of the www.disabilitykey.com website.

BUT, the best situation is to gollow the process in the DisabilityKey Workbook up front, and present the completed package to the Social Security Administration!

Best of Luck

Wednesday, March 08, 2006

2006 Paul G. Hearne/AAPD Leadership Awards WINNERS!!!

It is my pleasure to provide you with the information on this year's Paul G. Hearne/AAPD Leadership Award Winners. No, I did not win, this year, but will apply again next year. AND, if anyone out there has been assisted by anything you have read here, and would like to comment, please do so.

At any rate, please see what these folks are doing -IN SPITE of their disabilities. What can YOU DO if you put your mind to it????

Biographies of the 2006 Paul G. Hearne/AAPD Leadership Award Recipients
Megan O’Neil is a recognized expert on asset building for people with disabilities. She is the Access to Assets Project Coordinator at the World Institute on Disability (WID) in Oakland, California, which strives to expand the capacity of lending institutions, asset building programs and disability organizations to increase the inclusion of people with disabilities in poverty reduction programs.
A graduate of the University of Texas at Austin, she became a paraplegic in 1995 as the result of a car accident. It was her own experience as a disabled person that led to her advocacy and activism, and she has said that life on Supplemental Security Income (SSI) is what made her realize that she wanted more from life and from herself. In 2004, she sought to gain experience in the area of asset development, choosing as well to postpone graduate school.
Megan has since become a strong advocate for people with disabilities in the acquisition of capital and assets, explaining that poverty is endemic to the disability community and life on public benefits ensures subsistence, thus resulting in complacency and endangering our future. Megan is building bridges between the assets building and disability communities, providing information on how best to serve people with disabilities at all the major asset building conferences.
Explains Kathy Martinez, WID executive director, “In her short career as a disability advocate/activist, Megan has become a powerful force in the struggle to reduce poverty within the disability population by breaking down the walls of myth, misconception and ignorance that prevent disabled people from being considered good loan risks or entrepreneurs.” Megan is highly-regarded by the disability community on asset development issues, presenting to many groups, including the Ticket to Work and Work Incentives Advisory Panel.
It is Megan’s goal within five years to eliminate asset tests on structured savings vehicles and to exclude all savings accounts with limited access (penalties occur with early withdrawal) from SSI asset calculations. She emphasizes the necessity for increased advocacy and awareness, and more interaction with high-level policymakers.

Anisha Imhoff-Kerr is a young advocate who is striving to reduce stigma in the educational community in order to make it easier for people with disabilities to get a meaningful education. A full-time student at Albuquerque Technical Vocational Institute, where she is pursuing a double-major in political science and psychology, Anisha was diagnosed with bipolar disorder at the age of eleven. It is through her own experience as a college student, and her teachers’ limited experience in dealing with disabled students, that she began advocating for ways to educate educators on how to deal with students with disabilities.
Anisha created a Forum for educators on students with mental health issues, which was held April 2005. Most recently, she formulated a student survey and a list of questions for faculty and student interviews; she surveyed 450 students and 30 teachers about their knowledge of mental health topics, special services, etc., finding that there was very little knowledge in this area. Anisha intends to fold the findings from this survey into the expansion of the Forum.
She also uses her own experiences to help others by presenting workshops at conferences, and through State of Mine, a nonprofit youth-run advocacy organization she created. Through State of Mine, Anisha produced a video entitled Bipolar Unmasked, which illustrates what it is like to live a normal life with bipolar disorder as a teenager. She subsequently coordinated an art show, Visions, which displayed art created by teenagers with disabilities expressing what it is like to live with a disability.
In 2004, Anisha was awarded the Amy Biehl Youth Spirit Award in recognition of her work with State of Mine and in the community promoting mental health awareness. She received a grant to continue those initiatives, with which she started a high school health class program that discusses behavioral health topics.
Anisha, who also works fulltime for the New Mexico state government in the Children’s Cabinet, envisions law school in her future. She would like to widen the work she’s done for college mental health awareness, and recruit other youth advocates to continue and expand upon the work she is doing.

Tuesday, March 07, 2006

Disability and Diet: How to Select the "RIGHT" one for you?

Greetings!! In the last "Diet" blog entry, I admitted that I was investigating about diets, and intending to start one. I did my research, and have summarized that information here for you, so that you, if interested, can do your own investigation.

As you read the following, you might want to take the "test" to determine your own BMI (Body Mass Index). I discovered that my BMI, at this current time, is 34. So, I have decided on my particular diet plan, and, to date, have lost 12 pounds!!!

Best of luck to you as you make your own choices, focused on your own health.

How do I know if I am overweight?

According to the FDA, “Overweight refers to an excess of body weight, but not necessarily body fat.” Health professionals use a measurement known as body mass index (BMI) to classify an adult's weight as healthy, overweight, or obese. The BMI Calculator provided by the National Institutes of Health can help you calculate your BMI.
18.5-24.9 = Normal

25-29.9 = Overweight

≥(equal to, or greater than) 30 = Obese

Overweight is defined as a BMI of 25 to 29.9 and obesity is defined as a BMI equal to or more than 30. A normal BMI for men and women is between 18.5 and 24.9, although there are exceptions to these guidelines. For example, a person might have a higher than normal BMI if they are small in stature but very muscular, or an elderly person might have a normal BMI, but be considered frail or underweight. It’s important to remember that BMI is just a number and is recommended to be used as a guide only.

There are many other factors that need to be considered when judging how much you should weigh including:
waist-to-hip ratio (WHR)
bone structure
muscle mass
physical activity level
body shape

Whether you are overweight or would just like to lose a few extra pounds and get in better shape, you have probably heard of some of the popular diets and their different claims to help you lose weight. You may be wondering if they really work and about their health benefits. To assist you in better understanding many of the currently popular diets, below are some weight loss decision websites.

Weight Loss Plan Decision Websites

1) Which Weight Loss? – Best Weight Loss Plans & Diets Compared


2) How healthy is your diet? The screening quiz at this website will help you determine if you have a healthy diet.


3) Test your Knowledge about Nutrition


4) Weight loss: Finding a Weight Loss Program that Works for You (A pdf document published by The Partnership for Healthy Weight Management.) This site is a very valuable 12 page document that includes the following.
Ø Questions to ask about different Weight Loss Programs.
Ø A Body Mass Index chart (BMI)
Ø A Personal Health Profile Evaluation checklist
Ø A checklist for evaluating weight loss products and services.

5) Dieting Review: All the weight loss information you need.
Ø At this site, in the left hand column, you will find Diet Types. By clicking on a type of diet, you will find a summary of that program and pros and cons about it. Next, you will find different nutrition information; click on a type and find more information.
Ø At the top of the right hand column, you will find a series of weight loss tools. One of particular interest is a “Fast Food Chart” that provides calories and fat grams/item at various fast food chains.


Thursday, February 02, 2006

Disability and Diet; Why a Need?

It is a new year filled with new opportunities for all of us. If you, like me, have a Chronic Disease that you are managing, you might fact the same problem that I am currently facing. I AM OVERWEIGHT. No, to be completely honest with all of you, I must admit that I am obese.

How does this make me feel? Well, to quote teenagers, "it sucks"! It is one of the reasons that it has been hard for me to blog as much as I did last year. My committment to all of you is that I won't ask something of you that I haven't tried (and succeeded in) myself. So, in asking you to adopt the concepts of "Chronic Disease Self-Management", I had to first master it myself; in asking you to become an "Expert Patient", I had first to become one myself; in asking you to help your Doctor(s) join you in the new medical practice of "Patient Centered Health Care", I had first to practice this new health care with my doctors. (Note: all of these concepts are described in detail in previous blogs within this series.)

So, we come full circle back to Chronic Disease Self-Management. While I modeled this concept for you in understanding, documenting, communicating about, and achieving financial support for your Chronic Disease with my Disability Workbook and the www.disabilitykey.com blog, I have NOT modeled the part of this self-management that deals with maxamizing what health I have left.

Yes, my current quality of life is excellent, it will be significantly better when I loose the weight that I have gained since my diagnosis in 1997.

So, I come clean with all of you. I have been researching weight loss plans and programs. I have been researching the types of excercises that are optimum for folks with all types and conditions of Chronic Disease. I have selected a program, and have succeeded in loosing 6 pounds during my first week on my diet!

These next few blog enteries will provide you with the research that I have done for myself on both weight loss plans and programs, and on exercise programs; I'll share with you the challenges and successes I have along my journey; and, if you write in with questions, I'll share your successes and challenges too.

Tomorrow the journey begins! I sincerely hope that my journey diary helps motivate you to begin one of your own.

Tuesday, January 10, 2006

Disability Honesty: HAPPY NEW YEAR 2006!!!

Can you believe that 2006 is here? I am not sure where 2005 disappeared, but I look at my new calendar for 2006 and relish in the pictures of my intelligent, charming, captivating granddaughter, I realize that the new year is, indeed, upon us.

If you have been wondering why the postings to this site have been VERY rare in the later months of 2005, I recognize that I am a person with disabilities who really wants to model my beliefs for all of you that I am talking to. I recognize that I have to be honest first to myself, and then to all of you. It is not acceptable to me to just "talk the talk"; I also need to "walk the walk".

So, the end of 2005 found me moving, recovering from the move and the resulting illnesses and MAJOR FATIGUE; then came the holidays, and I wanted to really enjoy my time with family and friends. And, I discovered that I needed to work on my faith and ensure that I was providing guidance and wisdom for the "right" reasons. All of these introspective activities took me through the end of 2005. VERY HARD FOR A DIED-IN-THE-WOOL EXTROVERT!!!

Here it is 2006 and I feel that I finally am ready to continue blogging this blog and the one about Disability and the Workplace.

Here are some of the highlights to come:
  • Results of the 2006 Paul G. Hearne/AAPD Award;
  • Results feedback from those who have actually taken the advice in these blogs;
  • Steps I will be taking to further education of others;
  • How I personally am modeling my advice (particularly the part about taking responsibility for my own health care); etc.

I welcome advice and questions from you, readers. How has your journey been; how are you doing.

KEEP TUNED, and please, if you want, comment on this blog with your ideas and/or questions.

Monday, November 14, 2005

SSDI Financial Eligibility "Test"

You believe that you are disabled. You want to apply for SSDI (Social Security Disability Insurance) yet you do not know if you "qualify", at least financially.

The Social Security Administration online website has developed a "test" called BEST (Benefit Eligibility Screening Tool) to assist you.

But first, let's look at the "Earnings Requirement" for SSDI.

The SSDI Earnings Requirement
Eligibility is based on being "insured" through your tax contributions to the Social Security trust fund. In 2005 you will receive one Social Security credit for each $920 you earned (up to the maximum of four credits per year). The number of credits required to be eligible for disability benefits depends on your age when you become disabled.

Before age 24, you must have earned six credits during a 3 year period (12 quarters).

Between ages 24-30, you must have earned credits for half of the calendar quarters in the period beginning after age 21 and the time you became disabled.

After age 31, you must have earned credits for work in 5 years (20 calendar quarters) during a 10 year (40-quarter period) ending in or after the quarter in which you became disabled.

What is BEST? Here is the link: http://best.ssa.gov/#1#1

The Benefit Eligibility Screening Tool (BEST) is a tool that you can use to find out if you could be eligible for benefits from any of the programs Social Security administers. This tool will give you eligibility information based on answers you give to the questions on the following pages; however, BEST is not an application for benefits and:

1) will not give you an estimate of benefit amounts.

2) does not know, or ask for, your name or Social Security number.

3) does not access your personal Social Security records.

If you have Medicare and want to find out if you might be eligible for extra help with your prescription drug costs, go to

The following are the types of questions answered before you take the BEST test.

What benefits will BEST screen for?
How much time will it take to answer all the questions?
What types of questions will BEST ask?
Do I have to answer all of the questions?
What if I already get benefits from the Social Security Administration?
Who will see the answers I give?
What if I don't understand a question?
What if I am helping someone else?
What happens when I finish answering the questions?

Best of luck (pun intended!).

Wednesday, October 05, 2005

Disability: Job Negotiation and Customized Employment: Online Seminar

To begin to supply you with Disability and Employment information, we have located, and have provided you a link to, an online Seminar about Negotiating your Job and your Customized Employment.

"Online Seminars
Topic: Job Negotiation and Customized Employment
Pam Targett (the host of this online seminar) is the Director of Employment Services for Virginia Commonwealth University's Rehabilitation Research and Training Center on Workplace Supports. She oversees the day to day operations of the RRTC Supported Employment vendorship that serves approximately 70 individuals a year. She has been involved with direct services since 1986. During that time, she has served as the project coordinator for a number of demonstration projects that show how individuals with the most severe disabilities can work." (Note: bolding not part of the original document; added for emphasis only.)
Job Negotiation and Customized Employment

If you cannot access the online seminar clicking on the link above, here is the url to that site.


Sunday, October 02, 2005


Until I have the Disability and Employment blog set up, we will continue to add information to this blog.

The following information was provided from the Department of Labor's Office of Disability Employment Policy (ODEP) about the month of October: National Disability Employment Awareness Month!

In recognition of the importance of this intiative and of this month, Disabilitykey will initiate the Disability and Employment resources during the month of October.


"In 1945, Congress designated a week in October to recognize the skills and contributions of people with disabilities to the workforce. In 1988, Congress expanded the week to a month. National Disability Employment Awareness Month has become an important annual tradition. Throughout the years, this observance has grown into a celebration of our continued efforts to expand employment opportunities for people with disabilities. Secretary of Labor Elaine L. Chao recently announced the official theme for National Disability Employment Awareness Month 2005 — “Workers with Disabilities: Ready for Tomorrow's Jobs Today.” This theme will be used by the private sector; federal, state and local governments; and advocacy organizations around the country to plan events and programs that showcase the abilities and skills of job candidates who have disabilities.

As President George W. Bush has said, “Americans with disabilities are active and contributing members of our society, and they must have the opportunity to develop the skills they need to compete and obtain jobs in the 21st century workforce.” The President's New Freedom Initiative recognizes the tremendous contributions and potential of persons with disabilities who are, and who will continue to be, an important part of our nation's labor pool.

Under the leadership of Secretary Chao, the Department of Labor’s Office of Disability Employment Policy (ODEP) is developing and influencing policies and practices that directly impact the participation of people with disabilities in the workforce. On October 19th we will host National Disability Mentoring Day, promoting career development for students and job seekers with disabilities through one-on-one job shadowing and hands-on career exploration. On October 27th, Secretary Chao will recognize the winners of The Secretary of Labor’s New Freedom Initiative Award to recognize the non-profits, small businesses, corporations and individuals that have demonstrated exemplary and innovative efforts in furthering the employment and workplace environment for people with disabilities, a goal of President Bush’s New Freedom Initiative.

We are continuing our work to ensure that workforce development professionals have the tools they need to better serve the career goals of people with disabilities. We have also developed DisabilityInfo.gov, an important online resource that offers help for employers looking for hard-working and dedicated employees. This continually updated Web site guides users to resources on employment programs and job accommodations for people with disabilities.

In 2001, the responsibility for leading the nationwide recognition of National Disability Employment Awareness Month was transferred to ODEP. While we dedicate this month to raising awareness about the contributions and potential of people with disabilities, our work continues in advancing their full participation in the workforce and their communities."

Wednesday, September 28, 2005

Working with Disabilities; Disabilitykey Website Expanding

If you have been wondering why there haven't been more blogs recently, I could always blame the chores of moving! However, that wouldn't be the complete truth! The truth is that when you are busy, you always add more to your plate.

In addition to moving and keeping up with this blog and its ancillary email questions, my partners and I have decided to expand the www.disabilitykey.com website to also include information to assist employees with disabilities continue working!

There will be a "general" page added to the website; then, there will be general information for both the employee with a disability, and for HR Professionals. There also will be downloadable e-books for both employees with a disability, and for HR Professionals. Finally, I'll also get to do a "Disability and Employment" blog.

Just to tempt you, here's the first draft of what the Introductory page will look like. I say "first draft", because my "Editorial Partner" hasn't yet done his "majic" on the document. You see, we make a great team; I do the initial research and writing; he makes it look pretty, and professional. That's why I love these blogs; I get to say whatever I want, unedited! My Editorial Partner claims that I use 25 words when perhaps 8 would be sufficient!

Anyway, here's the first draft. AND, if you have any questions before we get online with these new endeavors, please comment on this blog.


The Disabilitykey Website has been expanded to include employment issues. The purposes of this expansion are:

1. to assist people with disabilities understand their rights and obligations when looking to continue working with a disability;
2. to assist Human Resource professionals better understand their obligations, and the rights and obligations of people with disabilities looking to continue working with a disability;
3. to provide tools and ideas for both HR professionals and people with disabilities design jobs and environments that meet the needs both of the company and the working person with a disability; and,
4. to host a Disability and Employment blog focused on providing information, questions, and result actions for all assisting people with disabilities interested in continuing to work.

The blog focusing on Disability and Employment will also provide an excellent opportunity for people with disabilities interested in continuing to work to ask questions and get answers from others also interested in this subject.

As you review the following pages, here are some statistics provided by the Federal Government about those who have already successfully hired people with disabilities:

Cost And Benefits Of Accommodations
The Office of Disability Employment Policy's Job Accommodation Network (JAN), a toll-free service, has been advising businesses and individuals about job accommodations since 1984. With the passage of the Americans with Disabilities Act (ADA) in 1990, JAN expanded to include information about the ADA. During the fiscal year that began October 1, 1994, and ended September 30, 1995, JAN received more than 80,000 calls from individuals and businesses in 50 states, the District of Columbia and Puerto Rico. Following is information related to these calls for advice, as well as examples of accommodations that were implemented as a result of the advice.
Major Issues of Concern
Percentage of Cases
Understanding the ADA 34%

Impact of Accommodation 13%

Conflict between Employer/Employee 13%

Cost of Accommodation 3%

Concerns related to Federal and State Agencies 6%

Other 31%

Top Five States Using JAN Number of Calls
California 10,079
Texas 4,776
Virginia 4,547
Pennsylvania 4,196
New York 3,921

Accommodation Costs Reported by Businesses That Used JAN
No cost 19%
Between $1 and $500 50%
Between $501 and $1,000 12%
Between $1,001 and $2,000 7%
Between $2,001 and $5,000 9%
Greater than $5,000 3%

Company Savings Because Accommodations Were Made
Value unknown 4%
Between $1 and $5,000 34%
Between $5,001 and $10,000 16%
Between $10,001 and $20,000 19%
Between $20,001 and $100,000 25%
Greater than $100,000 2%

Companies reported an average return of $28.69 in benefits for every dollar invested in making an accommodation.” (Red added for emphasis only.)

[1] U. S. Dept. of Labor; Office of Disability; Employment Policy; url: http://www.dol.gov/odep/archives/ek96/benefits.htm

Sunday, September 18, 2005

Disability and Moving!

Well, we sold the house last night, and I waited to do this blog until I knew that the Buyers had accepted our acceptance of their purchase agreement.

So, because we had already found our new home, and had already submitted what is called a "conditional" purchase agreement on that home, we now have JUST THREE (3) WEEKS to move!

Now please understand; I LOVE the new home. My set-up will be significantly improved, and the whole home is closer to my son's Church. However, I HATE MOVING!!

Have I mentioned that I hate moving? I am what was, in my youth, called an "Army Brat". What that means is that my Father was in the Army; he was an Army Lawyer - just like the lawyers in the TV series JAG. We moved all over the world: California, Japan, Virginia, Germany, California, Georgia, Kentucky, etc.

By the time I went to collage at age 18 I had moved 19 times, and everything that I owned in this world could fit into one large suitcase.

Needless to say, when I began my "adult" life, I began getting and keeping "stuff" like a pack-rat.

But once my MS became so severe that I needed to move to a one-level condo, I realized that I needed to start downsizing. Getting rid of: dried flower arrangements (about 15 of them); Pendleton suits great for working in a Bank, but not for a Ship Repair Yard; HIGH HEELS - great when you can walk, not so good when you can't; 100's of books - I now use the Library; etc.

So, I have downsized, and I STILL HATE MOVING!. I'll let y'all know how the process unfolds over the next few weeks. But for now, I challenge each of you; what is it that you hate to do; what in your life gives you headaches? Are you facing up to your roadblocks?

More later!

Saturday, September 10, 2005

Disability and Managing Change

I may have mentioned it before, but in my "pre-disABILITY" days I loved change - NOT! I'll rephrase that; I loved change that I WAS ABLE TO CREATE; I did NOT love change "foisted" upon me by circumstances beyond my control. So, being the resilient person that I grew to be, I decided to figure out what about the change I created that I liked; what about the change "foisted" upon me I didn't like, and how I could turn as much as I could into the positive.

When I made my lists, I found out that I liked having "projects" to do, where I could schedule and budget my resources: time, energy, finances, etc. I guess that all of this can be considered control. What I didn't like was being unprepared; not having the resources I needed to get the "job" - whatever it was - done. (Note: have you noticed that one of the secrets of reseliency and Expert Patient and Chronic Disease Self-Management is a positive, can do attitude?)

So, fast forward to today, and my chronically progressive Multiple Sclerosis and moving! Here's what I have done to turn this change into something I can control.

  1. As I have stated before, I greatly decreased my belongings, realizing that I really could live a full and quality life without the myriad of "things" that before, I believed that I NEEDED. As a result, it was easer to straighten things up, and create order out of my space - my part of the house.
  2. I got into the habit of washing laundry late at nite, and drying it first thing in the morning - all when my energy peaks were high. I saved greater energy-demanding tasks for after meals, or after long periods of rest, and kept the time bouts shourt (5 or 10 minutes).
  3. I use candles, music, lighting, and other "staging" ideas to make my space as presentable as possible for viewers.
  4. I fought the inclination to volunteer to assist my kids in their part of the house. They can do their own resource budgeting.
  5. Finally, and equally as important, I work with friends, so that in times where I need to be out of the house, I spend the day, or the week-end, with friends. That way, I an enjoying myself, and I can feel free to rest, if I need to do so.

Bottomline, if you don't like your current situation, figure out what you can do to make it better, within the realistic conditions of your current situation. Empowering yourself is a fantastic tool!

I'll be back in two days, after the Public Open House!

Thursday, September 08, 2005

2006 Paul G. Hearne/AAPD Leadership Awards APPLICATION

Well, I did it! I just sent of the actual application by email. As I promised, I have copied the actual application below for all of you to see. It summarizes what I have accomplished to date, and what I hope to accomplish in the future. As those of you who have read a few of these blogs probably realize, the hardest part of this application was KEEPING THE WORDS DOWN TO UNDER 700!! I'm just too wordy at heart!

Here's the application. I'll keep you informed about the outcome.


Like the distinguished Disability Pioneer, Paul G. Hearne, whose lifetime achievements inspired this Leadership Award in conjunction with AAPD, I too have spent a lifetime helping others access their personal and professional rights and goals.

The overarching concepts that have driven me for more than thirty years as a human resources executive and for the past 5 years, as an “emerging disability advocate” helping people with disabilities, are the following.

Disabled people, like people everywhere, need to:

1. understand their CURRENT situation, through research and learning, and adopt a constructive “attitude”;
2. develop a “picture” of their DESIRED situation, and seek out people, processes, and organizations to assist them in achieving their desired situation;
3. take responsibility for finding resources (people, places, jobs, etc.) to assist them in reaching their desired situation.

After thirty years of “relapsing/remitting” multiple sclerosis becoming “secondary progressive/chronic”, it was time to take my own advice and recognize that I am a disabled person. Knowing I didn’t possess a full knowledge of my disease
[1], I did know that I needed a financial safety net for my day-to-day life.

Through research, I uncovered many serious barriers for disabled people including:

1. they have a limited knowledge of their disease, symptoms, and impact it has on their lives;
2. they fail to accept the “new reality” that they can successfully function as a disabled person;
3. they need to learn how to effectively communicate their physical limitations to their friends, family and health care support team;
4. it is difficult to understand financial and medical insurances;
5. they have to contend with “silo disease associations”;
6. there are many challenges ahead including employment, education, and day-to-day living.

As a disABLED person, I documented my journey so that I could walk beside others in theirs. Focusing documentation primarily on the communication, health care and medical and financial insurance barriers I have achieved the following.

1. Successfully qualified for LTD
[2]; and, triggering ADA[3], defined a job that benefited my company and allowed me full pay for a year while on LTD.
2. Qualified for SSDI
[4] within 30 days the first time around.
3. Created a Disabilitykey Workbook of actual examples, blank forms, and step-by-step “How-To” processes.
4. Created a website:
www.disabilitykey.com containing information for overcoming health and financial insurance barriers.
5. Spent three years working as an Expert on the “About.com” helping people (200+) nationwide.
6. Became a Mentor with BIOGEN
[5], and the subject-matter of a national article focused on assisting MS patients (over 50).
7. Worked with, and participated in, the first Oregon State Caretaker Conference, discussing “Self-Advocacy” and effective communication.
8. Conducted a seminar on how to apply for SSDI
[6] with the Oregon Chapter of the National MS Society’s Program Director.
9. Rewrote the Disabilitykey Workbook (as an e-book) to be “disease generic” and reduced the price to $9.95.
10. In June, began a “Disabilitykey Blog” addressing all topics of interest. Fifty-three blogs have been written, and my website averages 1,300 “hits” per week.


In the next five years I will extend the scope of helping the disabled access the personal and professional rights and goals that they deserve. In collaboration with my “mentor/supportive colleague” Ann Balzell
[7] and, with both the recognition and financial assistance from this award, I will accomplish the following.

1. Attend training to become a certified “Chronic Disease Self-Management Program
[8]” Trainer, and train other trainers in Oregon disease associations.
2. Conduct communication, self-advocacy and SSDI seminars to Oregon disease associations, breaking down “silo disease associations”.
3. Continue Disabilitykey bloging, and providing the Disabilitykey Workbook.
4. Work through partnerships with local disease associations, and human resources associations, to educate HR professionals about ADA and reasonable accommodations.
5. Work with local partners to identify and resolve personal and professional problems that face disabled people. Ideas include: having local disease associations link to my blogs; soliciting ideas on associations’ websites; conducting informational meetings at disease associations, etc.
6. Work collaboratively with AAPD to take locally successful processes nationwide.

Thank you very much for the opportunity to be considered for this award. (691 words)

[1] I am using the word “disease” to cover also: illness, condition, and injury.
[2] LTD - Long Term Disability.
[3] ADA - Americans with Disability Act.
[4] SSDI - Social Security Disability Insurance.
[5] BIOGEN - Pharmaceutical Company that manufactures MS medications.
[6] Comments on assistance from About.com and the MS article can be found at the www.disabilitykey.com website; “About Us” link; “Reviews and Testimonials”.
[7] Ann Balzell, Program Director, Portland Chapter of the National Multiple Sclerosis Society, and the person who authored my letter of support.
[8] Established by Stanford University.

Sunday, September 04, 2005


In 15 minutes we will be celebrating Labor Day, 2005! I don't know about you, but I don't know where this year has gone! It's September already, and fall is just around the corner.

As part of my research for ideas for this blog, I discover many great websites. One of the sites that I found is that of the Home Page for AAPD; American Association of People with Disabilities. And, while searching this site, I discovered that the site offers an annual award for "emerging leaders with disabilities of any age". The award is called:

The (award date) Paul G. Hearne/AAPD Leadership Awards

The award is named after a man who was "...a tireless advocate and visionary leader with a lofelong disability who achieved success as a lawyer, nonprofit executive, foundation president, federal agency director, and mentor to countless people with disabilities."

Here's a direct quote from the website about previous awardees.

"The 40 previous awardees represent a diverse group of people with disabilities aged 11 to 56. Individual award recipients have: built a web site to educate people with psychiatric disabilities; gone into academia to direct the education of tomorrow’s social work professionals; worked to educate the public about the abilities of people with Down syndrome; raised money for accessible playgrounds across the country; and actively promoted the political participation of people with disabilities."

Well, I am in the process of applying for one of the two 2006 Awards. When I have completed my aplication, I'll share it with you, so you can see what my plans are for the future. I'll continue my plans even if I do not win the award; it would just be easier to accomplish my goals with the award.

So, what about you on this Labor Day week-end. Are you thinking about some goal that you want to achieve? Are you, like me, ready to get out of your "comfort zone" and reach for the stars? Come on; think big; share your dreams with others and let them work with you on achieving them.

Probably no surprise to y'all who have read any of these blogs, but the hardest hurdle for me in this application process is to "eliminate the fluff" and keep the application essay to no more than 700 words!

Stay tuned.......

Friday, September 02, 2005

Disability and Helping Others - Like Katrina Survivors

For those of you who have friends and relatives living in the path of Katrina, all of you are constantly in my thoughts and prayers!!

As someone who has been practicing the concepts I discuss in these Blogs, I will state unequivically (SP?) that helping others helps me! That may sound bromidal, but it really works. When you concentrate on the pain of others, and on what you can do to help them in any way to aleviate that pain, you are NOT thinking about yourself!

Remember the poem "Footprints"? There's the line where the "talker" in the Poem says something like this: Lord, when I needed you the m ost, I look back and only see one set of Footprints. The Lord replies: that's when I was carrying you.

We too can help "carry" our brothers and sisters in need or our help as a result of Katrina. Consider the following:

  1. If you can afford it, perhaps contributing to the American Red Cross might be an option for you.
  2. Perhaps you are a member of a religious institution that is working to put together care packages for those folks in need, withoug ANYTHING. Our Church is putting together packets containing the basic needs: toothbrush, toothpaste, washcloth, towel, Large-size t-shirt, kleenex, toilet paper, a package of gum.
  3. Perhaps you belong to a support group, or a neighborhood association. One group in my area is putting together packets for kids: a blanket (child size); a stuffed animal; toothbrush and toothpaste; crayons; a tablet of paper, etc.
  4. Perhaps your local TV station, or Radio station is collecting contributions for some special contributions; one group I heard is donating a LARGE 5-Wheeler, with cheese, milk, and other staples (I think this is somewhere in the mid-west).

AND, after you have done whatever you think you can for the Katrina survivors, why stop there? What are your strengths? (Now, come on, I know that you have to focus on your symptoms and their impairments to be able to communicate with your Health Care team, but you also need to focus on your strengths. I, for example, as if you couldn't already guess, LOVE TO WRITE and provide information in this Blog. In future blogs, I'll share what else I am doing to assist others. Now even though I do a lot of typing for my blogs, it isn't easy. My cognative skills are decreasing more and more each week. The messages from my brain to my left or right hand often cross, requiring me to spend 2X or 3X longer to type than it used to.

Whatever your strengths are, I am certain that there are others in your community that could use your help. Keep up the energy that you started with helping the Katrina folks, and help others close to home.

Peace and happiness coming from me and mine to you and yours! Take a moment and be thankful that you were NOT affected by Katrina!

Wednesday, August 31, 2005

Living Well With Chronic Illness: Autoimmune Diseases

When we finally figured out that we couldn't hide from our Chronic Illness, but needed to find ways to Manage it rather than having it Manage us, we took the first step along the journey of understanding, education, skill development, and Living Well with a Chronic Illness!

This is the first in a series of blogs targeted toward our learning how to live well with a Chronic Illness. Today's blog is about Autoimmune Diseases. The following link is to the "Living With Chronic Illness" page of a website dedicated to Autoimmune Diseases. The Association is ACES; it stands for: Autoimmune Cure, Entertainment and Support.


Redefining "normal"
For those of us living with a chronic illness, there can be many ups and downs. Nothing is as it once was, and "normal" no longer exists in our vocabulary. Maybe the following information will help you to redefine the term "normal" and learn to live with your illness as best as you can.”

Since your next question probably is: What ARE Autoimmune Diseases, this is the definition provided by the website:

What Are Autoimmune Diseases?
The word "auto" is the Greek word for self. The immune system is a complicated network of cells and cell components (called molecules) that normally work to defend the body and eliminate infections caused by bacteria, viruses, and other invading microbes. If a person has an autoimmune disease, the immune system mistakenly attacks self, targeting the cells, tissues, and organs of a person's own body. A collection of immune system cells and molecules at a target site is broadly referred to as inflammation.

There are many different autoimmune diseases, and they can each affect the body in different ways. For example, the autoimmune reaction is directed against the brain in multiple sclerosis and the gut in Crohn's disease.”

If you have a chronic disease question, or a problem with your disability, please add a comment to one of these blogs, and we will research the situation for you.

In the meantime, Here's to "LIVING WELL WITH CHRONIC ILLNESS"!

Monday, August 29, 2005

Disability; Resiliency Part #2: How Can You Become a "Resilier"?

Disability; Resiliency as a step toward becoming: an Expert Patient; a Chronic Disease Self-Manager; a partner with your health care providers in Patient-Centered health care; and, a practitioner of Self-Efficacy[1] - Part #2 – How Can You Become a “Resilier”?

In Part #1 of this series, you were introduced to Al Siebert, PhD, the author of The Resiliency Advantage. He also provides lots of information in his two websites:


In Part #2 of this series I will share with you an actual professional and personal example of how I effectively demonstrated these concepts that Dr. Siebert discusses so eloquently. AND, because I valued his insights and wisdom so much, in both instances I asked him to provide assistance to me in better assisting others in their “Resilience Journey”!

As you read the following examples, please keep in mind the definition of Resilience provided by Dr. Siebert in the book (page #5), quoted in part #1, and here:

“Resilience, resilient, and resiliency refer to the abilitly to
- cope well with high levels of ongoing disruptive change;
- sustain good health and energy when under constant pressure;
- bounce back easily from setbacks;
- overcome adversities;
- change to a new way of working and living when an old way is no longer possible; and,
- do all this without acting in dysfunctional or harmful ways.”

Professional Example – The Benj. Franklin
[2] S & L[3]

At the very end of the 1980’s, and into the 1990’s, America’s Savings and Loan Institutions were in trouble. Many of them were in so much trouble that they ended up being taken over by the “RTC”, or “Resolution Trust Corporation”. The Benj. Franklin S & L, the largest S & L in the Pacific Northwest, was one such S & L that fell into this category in 1990.

Now, the Executives, Managers/Supervisors and Employees of The Benj. Franklin S & L firmly believed, for a variety of reasons, that THEIR S & L was NOT in trouble, and, therefore, would not be overtaken by the RTC. As a matter of fact, the week-end prior to the takeover, the Executives had brought into Headquarters for a week-end conference, all Managers for a “motivational and leadership” conference! The previous week, the Executives had completed their justification for Not requiring the “assistance” of the Resolution Trust Corporation.

The absolute shock with which the Managers, remaining Executives (the top Executives were removed by the RTC immediately) and the Employees of The Benj. Franklin S & L received the takeover by the RTC was exacerbated by the high that they had experienced the previous week-end, when they were certain that they would be left alone to continue managing their Financial Institution!

So, the remaining S & L workforce was faced with an unexpected and VERY DISRUPTIVE CHANGE! How were they going to react? Fortunately, this takeover event occurred late in the workweek. The timing allowed the remaining Executives to strategize about how to regain control of day-to-day operations; how to help the S & L employees “cope” under the forthcoming chaotic times; and, especially, how to overcome their own adversities so that the RTC change would appear transparent to The Benj. Franklin’s primary asset; THE CUSTOMERS.

We remaining Executives and Managers formed two teams: MASH and SWAT. Now, remember, this was 1990, and the television show MASH was a popular TV show. Remember Hawkeye Pierce
[4] and all of the Doctors, Nurses and staff in the movie and the TV show? Well, the team focusing on the “care and feeding” of the S & L employees became the MASH team; the team focused on working with the RTC to minimize the operational impact on customers and to “research” potential Financial Institution acquirers[5] of the S & L became the SWAT team.

The MASH team’s responsibility was to supply the S & L employees with the tools that they needed to become Resiliers. I am concentrating on that team, as I was an instrumental part of that team’s success. I’ll cut to the bottomline, and then explain how we got there.

The Benj. Franklin became the only S & L under RTC Conservatorship that I know of that accomplished the following (but successes were not limited to this list only).
1) Ended up rehiring employees who initially left the institution at the time of the change, because they had discovered that in spite of the crisis of RTC Conservatorship, the employee environment was positive and rewarding.
2) Financially, the Institution MADE MONEY under RTC Conservatorship! Anecdotal information from customers was that they kept their money in the S & L because, on the first Monday of the Conservatorship, the Tellers (the Institutions front line contact with Customers) told the Customers that they, the Tellers, were fine - “…they are treating us well”.

Using the Resilience criteria from Dr. Siebert’s book, here’s how the MASH team helped the S & L employees with their resilience skills.

1) Cope well with high levels of ongoing disruptive change. Over that first week-end, we remaining Executives and the Managers revised our “Human Resources” strategy, and were prepared to communicate this strategy to Employees BEFORE they met the customers.
- We suspended job descriptions, and allowed employees to work to their strengths.
- We told employees that we wanted them to stay with the S & L and delight the customers far above ever before, and we would make their “conservatorship experience” the high point of their career, also preparing them for a new job. BUT, if they didn’t think that they could, or wanted to stay, we would help them find another job, outside of the S & L. As stated above, some employees who initially left, came back, primarily because of the MASH team’s initiatives.
- We, along with the SWAT team, went to the new RTC leadership, and came to an agreement to work together to retain employees, processes, and funds.
- We all agreed to treat the employees CONSCIOUSLY as customers, each and every day!
2) Sustain good health and energy when under constant pressure. This resiliency category was where we used Dr. Siebert’s help directly. He was asked to come into the home office and meet with as many employees as we could get into meetings, to help them vent, recognize what could not be changed, and refocus their energies into constructive actions and not destructive actions.
- Dr. Siebert had them make lists of what they HATED about the takeover; how unfair it was, and actually vent.
- He then asked them to make lists of what GOOD they thought could possibly come from this change. I fully remember a representative from each session hesitantly (because this type of input was NOT usual in the previously “staid” Financial Institution!) coming into my office with the group’s list of positive change suggestions!
- One of the most significant suggestion that fostered good health and energy was adopted, and became “Friday at Four”. One Friday, each month, the S & L closed an hour early, and all employees celebrated and played! The first event was a Carnival, held on the top level of the parking garage. It even included a Dunk Tank! AND, the RTC leadership agreed to take turns (along with remaining S & L Executives) in the Dunk Tank. Imagine the significance of employees actually being allowed to throw objects at the primary focus of their anger!
3) Bounce back easily from setbacks. As each day brought new challenges we as a group worked together to do what was best for the customers and the employees. We accomplished amazing things for our employees so that they could continue their benefits after they left the S & L. I’ll never forget one employee coming up to me after a meeting where we discussed what we were doing for employees. What he said pretty much sums up why what we did for employees resulted in Operational success, and led to each of us who went through this experience to grow stronger.
“Carolyn, my wife is 8 months pregnant, and my 10 year old daughter was just diagnosed with cancer. I know that my job will not ‘flow over’ to whoever acquires The Benj., and I was frantic about retaining benefits for my family. With what you guys have done to make sure we keep our benefits, I’ll be able to provide them for my family at this critical time. I’ll do anything for a company who thinks ahead to help me and my family like this!”
4) Overcome adversities. We had many employees who had worked for The Benj. for over 20 years, and had never had to write a resume, let alone look for a job!
- We hired one of the premiere Outplacement Companies in the Pacific Northwest, and had them conduct classes not only in the home office, but in the branches as well. The classes provided a lot of skills including, but not limited to: resume writing; interviewing; identifying strengths; learning how to convert “weaknesses” into “developing strengths”, etc.
- To better instill confidence into employees, and to better prepare for whatever institution acquired The Benj., each department was encouraged to develop their “PLAN”. This PLAN
[6] consisted of: departmental successes; departmental ongoing operations; departmental challenges; etc. The Plan was to answer the following question: If the members of the department were to acquire one like it, what would they want to know to become as operational and successful as possible in the shortest amount of time.
5) Change to a new way of working and living when an old was is no longer possible. As can be seen from the examples above, we created an entirely new, inclusive, dynamic, organic, ever-changing, and positive working environment for the employees. While still a difficult, chaotic, and frustrating time, for many of the employees, it was the best working experience they had ever had!
6) Do all this without acting in dysfunctional or harmful ways. In my humble opinion, what we accomplished the first week-end, followed-up by the “Friday’s at Four” and the hiring of the Outplacement group, allowed the employees to learn and/or hone resilience skills that they may not even have known that they had! Again, we were the only S & L that I know about that made a profit while under RTC Conservatorship!

When I finally received the conclusive diagnosis of “Chronic Progressive Multiple Sclerosis”, I knew that I had to figure out all of this “benefit stuff” like Long Term Disability and Social Security Disability Insurance. So, I did! The Disabilitykey Workbook reflects the actual process that I used to become successful.

About this time, Dr. Siebert contacted me about appearing with him on a local television show to discuss how people with Disabilities can use the same coping skills that Survivors or Resilers use. It was my pleasure to appear with him and provide actual examples of success.

On his
www.thrivenet.com website, Dr. Siebert asks the following:
“How do you react to unexpected difficulties? Healthy, resilient people have stress-resistant personalities and learn valuable lessons from rough experiences. They rebound from major setbacks even stronger than before.
When hurt or distressed, resilient people expect to find a way to have things turn out well. They feel self-reliant and have a learning/coping reaction rather than the victim/blaming reaction that is so common these days.”
He then provides a set of questions that you can use to see just how resilient you are.

Finally, I strongly believe that these concepts are, in part, what served as my foundation, allowing me to become an Expert Patient; a Chronic Disease Self-Manager; work with my health care team in a Patient-Centered environment;, and, to achieve Self-Efficacy. You too might find that Dr. Siebert’s books and websites can help you.
If you have read Dr. Siebert’s books, I’d love to hear from you about what your experiences have been.

[1] Here is the definition of self-efficacy used in the context of chronic disease management: Self -efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations associated with one's chronic illness.
[2] Yes, this spelling of “Benj.” is the correct name for the S & L, and not a typo. The S & L was named “Benj. Franklin” instead of Benjamin Franklin, as “Benj.” was how Mr. Franklin signed his name on the Constitution of the United States. Hence, the name of the S & L as “The Benj. Franklin S & L”.
[3] I became a Management Consultant while on my first year of LTD, helping to establish a new firm. The late CFO for The Benj. Franklin S & L provided me with this recommendation, in part, because of the success of this professional example: "I have known Carolyn Magura from oversight of her outstanding performance in developing and managing human resource programs in a complex organization with hundreds of employees. Whether it is with hundreds of employees, or with much smaller workforces, Carolyn may be counted on to bring to bear practical cost-effective solutions. You can rely on her attention to the employer's parameters, the legal necessities and care of the employee's needs.” The late Ian D. G. McKechnie, Retired CFO, The Benj. Franklin S & L Assn.; Chair of the Oregon State Housing Council

[4] Coincidentally, Dr. Siebert’s early work culminating in his book The Survivor Personality: Why Some People Are Stronger, Smarter, and More Skillful at Handling Life’s Difficulties…and How You Can Be, Too, referenced Hawkeye Pierce of MASH as a perfect example of a “Survivor Personality. I believe that it was my early internalization of these concepts that allowed us to fall back upon this as one of our core concepts at this significant time of Crisis.
[5] Bank of America became the ultimate successful acquirer of the S & L; it, along with 2 or 3 other Financial Institutions carefully reviewed us during our conservatorship.
[6] I still have a copy of the Human Resource Department’s “PLAN”, and have used parts of it in subsequent organizations.

Thursday, August 25, 2005

Disability; Resiliency as a step toward becoming a practitioner of Self-Efficacy; Part #1 - Introd. of Al Siebert, PhD, and the concept of Resiliency

Disability; Resiliency as a step toward becoming: an Expert Patient; a Chronic Disease Self-Manager; a partner with your health care providers in Patient-Centered health care; and, a practitioner of Self-Efficacy[1] - Part #1 – Introduction of Al Siebert, PhD, and the concept of Resiliency

In a previous blog, I announced that the three (3) primary goals of the
www.disabilitykey.com website and of the disabilitykey blog are:
1. To educate, by surfing the Internet and finding information that interests me, a disabled person, thereby doing the "research" for those who are becoming disabled; who are disabled; who provide care for those who are disabled.
2. To encourage, push, cajole, and use whatever means at my disposal (except for bribe, as I can't afford it) folks who are becoming and who are disabled to take primary responsibility for becoming an Expert Patient; for learning how to become proficient in Chronic Disease Self-Management; and, for insisting that your health care support team practice what is called "patient-centered" health care.
3. For learning as much about your condition and its symptom impairment impacts on your normal daily living activities that you become more empowered to accomplish whatever you set out to do (i.e., apply for and qualify for SSDI the first time around), thereby increasing the quality of your life. To assist readers to achieve a condition where they consider themselves a valuable "alternatelyAbled" person who just happens to have a chronic disease, but is NOT defined by that disease!

In a continuing desire to better define these concepts, and to give you specific tools to assist you in your learning and development process, I published a blog on August 24th, 2005 entitled “Disability and Stress”. In this blog, I introduced you to a "decades-long" colleague of mine from whom I have learned a lot about these concepts. As a result, I have had the opportunity to internalize and to actually use his concepts both professionally and personally.

This colleague’s name is Al Siebert, PhD. He is the Director of The Resiliency Center; he is also the author of The Resiliency Advantage and The Survivor Personality.

His three websites are:




For those of you who are unfamiliar with any of the above-mentioned concepts, please check out previous blogs within the disabilitykey blog archives. These concepts are ALL described in great detail, as is the research behind each. What I realized that I needed to do, in addition to articulating these topics, is to provide you with some practical guidance on essentially, what it takes to become a “healthy person”.

Please understand; I am fully disabled; I have been managing the symptoms of progressively chronic Multiple Sclerosis for over 45 years. And yet, I define myself as a “healthy person”! As I have explained before, I am an Expert Patient; I am a Chronic Disease Self-Manager; I experience Patient-Centered health care with my health care support team; I practice Self-Efficacy, and I am, as my colleague Al Siebert has called me, “…a fabulous ‘resiler’
[3]!”. All of this allows me to be a “healthy person”, who just happens to have a disability!

While this may seem inconsistent, please bear with me through this and subsequent blogs. I plan on providing you with actual real life examples of where I have partnered with Dr. Siebert to implement his concepts in both workplace environments, and in personal situations.

Having just reread Dr. Siebert’s book The Resiliency Advantage in light of these disabilitykey blogs, I am finding entirely new levels of understanding and meaning for those of us living with, or helping others living with, chronic illnesses! It shouldn’t amaze me; his wisdom worked wonders in helping me help my employees in better managing their work environments during times of crisis and constant change; why shouldn’t it help us – those of us coping with the daily crisises and constant change of chronic illness? The answer, of course, is it does help.

In finishing today’s blog, we will define resilience, resilient, and resiliency as Dr. Siebert does in his book The Resiliency Advantage
[4]. As you read this definition, think, carefully, of your situation, attempting daily, to manage your chronic illness. If you have difficulty relating the definition to your situation, feel free to write a comment to this blog. We will be linking the concepts together in future blogs.

“Resilience, resilient, and resiliency refer to the abilitly to
- cope well with high levels of ongoing disruptive change;
- sustain good health and energy when under constant pressure;
- bounce back easily from setbacks;
- overcome adversities;
- change to a new way of working and living when an old way is no longer possible; and,
- do all this without acting in dysfunctional or harmful ways.

If you look in an unabridged dictionary, you will see that “resile” is the verb for resilience and “resiling” is the adverb. The words “resile” and “resiling” will be used in this book at times to emphasize that resiliency is something you do, more than something you have.”

Are you a “resiler”? Let me give you a hint; the key is contained in the last sentence of the quote, above, from Dr. Siebert's book.

Stay tuned…….

[1] Here is the definition of self-efficacy used in the context of chronic disease management: Self -efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations associated with one's chronic illness.
[2] Both of Dr. Siebert’s books can be purchased on his websites.
[3] Al Siebert autographed a copy of his new book The Resiliency Advantage this way for me in May of 2005.
[4] The Resiliency Advantage; Copyright © 2005 by Al Siebert, PhD; ISBN-13: 978-1-57675-329-3; page #5.

Wednesday, August 24, 2005

Disability and STRESS!!

Once upon a time during one of my "working lives" (when I was working, each job seemed like an entire "life"; after awhile, I got into the habit of referring to each job environment as a "past life") I went to a seminar designed to assist the participant "deal with difficult people". The seminar leader REALLY impressed me, and I took time, after the seminar, to meet him and to tell him just how impressed I was with what he had to say. Thus began a 25+ year collegial relationship! AND, never forgetting his messages, I pulled him and his wisdom into at least three of my "lifetimes". I have asked him for permission to share his wisdom with you; when I receive his approval, I'll introduce him to you.

In the meantime, his long-ago wisdom came back to me this past week as we (me, my son, daughter-in-law, and 2 year old "normally active" granddaughter) proceeded to get our home and yards (front and back) ready to sell. Making this odious task even more difficult, is the fact that implicit in the "getting ready to sell" process is the knowledge that once you get the yards and home painted, cleaned, "staged" and perfect-looking, YOU STILL HAVE TO LIVE THERE UNTIL IT SELLS!!! AND, we have 4 cats, and a growing puppy who REALLY likes to dig holes in the back yard, and dig up every flower and plant we try to plant!. I kid you not; this Golden Retriever puppy loves to dig a hole and put his head into it! It looks really funny, but I guess that the cold damp earth is comfortable for him.

Now to the cats; two are black-haired and short haired; the third one allowed into the home is long-haired and is shedding ALL OVER EVERYTHING (yes, summer does actually come to those of us who live in the Pacific Northwest). AND, the cats live downstairs with me, because they don't like the puppy who sometimes gets to come inside upstairs. So, I have to continually vacuum up cat hair from the rugs, carpets, chairs, couches, etc.

With this as a backdrop, and, having Multiple Sclerosis as my "challenge", stress is something that can hamper my quality of life - IF I LET IT. AND, this can be considered a stressful time.

That's where my colleague's advice came rushing back to me. In that long ago seminar, he boldly stated something along the lines of the following:

"The man who originally discussed the concept of "stress" later said that he was mistaken. Stress does NOT EXIST! There are only people, situations, and how people choose to react to/handle those situations!"

The example associated with this great pronouncement was the following: consider yourself on the receiving end of someone throwing you a 150 pound "medicine ball" (whatever this is - I guess it is a "guy thing"). Most of us pictured ourselves: a) trying to catch the ball and failing or being knocked down flat; or b) stepping aside and waiving at the ball as it sailed by us. Next, my colleague asked us to consider that medicine ball being thrown to someone like Arnold Schwarzenegger (back then, he was not California's Governor). We all pictured Arnold catching the ball; probably with just one hand!

We were then reminded that for us, this siuation might have been "stressful"; for Arnold, it was just business as usual. The point of this example was clear; just people, situations, and what people choose to do with the situations.

So, taking my own advice and lectures about Chronic Illness Self-Management (and wait until I get to discussing exercise - I hate having to actually do what I recommend!!!) I realized that this moving situation would be stressful for me, only if I let it. Now, recognize that I concentrate only on me, because I am the only one I can control. My kids have to figure this out for themselves!

Anyway, here's what I am doing, and will continue to do to react to this situation and not let it result in "stress" for me.

  1. By now, I know what I call my "activity threshhold". This means, I know just how much I can do activity-wise before I reach exhaustion. (Note: exhaustion for me means shortness of breath; breaking out in a full body, cold sweat; vision bluring; pain in back; head throbbing.) My threshhold, is about 10 minutes sitting, and 5 minutes standing. So, I do what work I need to do in "small bites", and rest, in my recliner, with a fan and a cold, wet washcloth, between "work bites". Also, since I can work longer sitting, I have a mobile stool, and you would be surprised at how well I have figured out how to sweep and wash floors while sitting on my stool!
  2. I have GREATLY reduced my "things". I REALLY do not need to keep 100's of books around; I have recently discovered just how well the library works. I have reduced my "nick nacks" down to what can reasonably fit into a "curio cabinet". I have REALLY reduced my clothes - just ask my friends who, in the past helped me move my 4 closets full from one place to another!
  3. I am really focused on changing my sleep pattern so that I get up before 1 or 2 pm. This is the hard one for me, as my current sleep cycle apprars to be 4 or 5 am to 1 or 2 pm. BUT, we can focus on activities and control them, not let them control us.
  4. Next, I am drinking more fluids, and working to eat more fruits and vegies.

These may not be the steps that work for you, but they really help me. There will be much more on concepts like this in blogs to come. If you have any ideas for me about how you have "evened out" your life, please let me know!

Monday, August 22, 2005

Quality of Life, Part #2: Enjoying the Moment

Quality of Life Part #2: Enjoying the Moment

I had the pleasure recently, of answering a question from someone who CLEARLY is following her dream, and who has attained a fantastic quality of life. Her name is Diesel, and her website is:

She is a songbird, whose music stirs the soul, and whose lyrics remind each of us why we are human! Here are some comments about her music:


Look at these words: unique – yes she is; soulful, yes the combination of the music is a breeze stirring your soul; heartbreaking, yet hopeful lyrics; and, distinctly different. I have had the opportunity to listen to both of her CD's and am amazed at her versatility and range; and at her unique combination of impactful lyrics and soulful music.

One of the constant themes of the www.disabilitykey.com website and of the blog there is the theme of self-reliance; of self-assurance; of accepting where you are at any point in time, and making the absolute best of your situation. We who are disabled; who fight each and every day to attain a quality of life, often look back to what “was” and believe that “the good old days” were the BEST!! Instead of attempting to recapture a shadow of what was, we should concentrate on making the best of the moment we have now!

AND, what about all those others whose life we THINK that we envy? They themselves suffer from wanting something different also. But, we are stronger, because we must fight to reinvent ourselves and achieve a whole different type of life. We are provided with the opportunity to regain control over our lives. Those without such an opportunity, often give up their control without even knowing it.

All of this has been captured in a song that Diesel wrote herself; consider the following (copied here with the express permission of Diesel herself).

"Never Enough" - Song
I'll Be Ready In A Minute... - CD
written by Diesel

"Why are we always thinking grass is greener on the other side?
Tell me, in this life we're living, will we ever be so satisfied?

A man with an average paycheck
Married to his average wife
Living in his average mansion
Anyone would envy his life
Sittin' in his average Mercedes
Listenin' to your average blues
Thinking he'll go down to the basement
To end it all with your average knife

It just wasn't enough for him
It never was as good as it seemed to be
Living in the moment was not for him
He's trying to set himself free

A woman in a beautiful red dress
Sipping at an average wine
Dining in a fabulous restaurant
Loving husband at her side
Everything she's wanted and much more
But she just doesn't see it that way
Claiming someone else as her soulmate
She breaks her promises and leaves him behind

It just wasn't enough for her
Never was as good as it seemed to be
Living in the moment was not for her
Maybe she was lost in the forest
Maybe she's just too blind to see

So take a look in your lifetime
Starting with your average friend
Do you really know how his life is?
He may have some sorrow to mend
And if you're thinking yours isn't so good
Take a moment to look around
Life will give you what you put into it
And you can always choose how you want it to end

Are you happy with what you've got?
Living in the moment can set you free
Everyday's another gift from above
Wandering around in the forest
As you wander around in the trees
Never take a moment for granted
Take another moment to see

Why are we always thinking grass is greener on the other side?
Tell me, in this life we're living, will we ever be so satisfied?" © by Diesel

So, are you going to accept the challenge provided to you to regain control over your life? As Diesel so eloquently says, “Tell me, in this life we’re living, will we ever be so satisfied?”

The other comment Diesel points out, is the joy of "living in the moment"! When was the last time any of us relaxed enough to feel the breeze in our face; to join in with the laughter of a child; to smell a rose in bloom; to listen to wonderful music and give thanks to the songstress for her gift to us?

THANK YOU, Diesel, for reminding all of us to be thankful for WHAT WE HAVE; to celebrate the life we have rather than regret what we do not.
And, if you too would like to experience Diesel's music, you can purchase her CD's at her website
http://www.dieselmusic.com/, and at www.amazon.com.

Thursday, August 18, 2005

DISABILITY and Living Well; Outings!

Today we are starting a series of blogs about every day living with a disability. One of the things that I have discovered over the past 5 (five) years where I have been on Long Term Disability (LTD), is to redefine the concept of "Living Well". These blogs will share examples of "before and after" stories in my life that describe how "Living Well" has changed, for me, but that change does not mean "for bad", it can be for better! Hopefully, my stories and examples may trigger ideas for you on your journey/transition from your "before and after" disability.

If you are like me, you used to do a lot of things that your current situation has changed. One of the hardest lessons for me to learn (besides patience, which I HAVE NEVER LEARNED, AND PROBABLY NEVER WILL!!) was that of substituting new pleasures for previous, loved ones.

AND, you don't have to make these changes by yourself (as a matter of fact, it is far easier to make the changes if you get feedback, help, and support from family and friends).

I have a dear friend who has been both a friend and colleague for going on 22 years now. When I was compiling data to apply for LTD and SSDI, I asked this friend to write a letter for me, describing, in her words, what the differences were that she observed in my "normal daily activities" since the onset of the Secondary Progressive stage of my Multiple Sclerosis. (Disabilitykey note: This process is covered in detail in the Disabilitykey Workbook, found at the www.disabilitykey.com website.)

This is a copy of the letter my friend wrote for me (genericized so that if you want to use it as an example for a friend of yours to do for you, you can use it).

Social Security Administration (OR, LONG TERM DISABILITY COMPANY)Re: YOUR NAME

To Whom It May Concern:
A long-time friend of mine, YOUR NAME, has asked me to write a letter to your office on how I've seen YOUR DISEASE impact her life activities.
To begin with, our families have shared a close relationship for more than 17 years. We have frequently socialized and vacationed together, worked together professionally and shared many holidays. YOUR NAME and I have become even closer since we both went through a divorce almost 8 years ago.
When YOUR NAME asked me to write this letter she requested I provide you with some facts on my observations on how MS has had an impact on her life over the past 17 years. As I look back at the years a number of examples come to mind. As part of my letter I included a few examples:
· During the early years of our friendship we frequently enjoyed camping together as families. The vacations were active adventures that always included daily hikes. YOUR NAME was always an active participant on these outings and we found ourselves continually busy from sunup to sundown. Unfortunately as the children grew up YOUR NAME's health began to limit her participation in our outings. She would begin to hike shorter distances and then return to camp and sometimes would stay behind all together. These changes appeared to be gradual until eventually we noticed that her balance was impacting her ability to participate safely, so she would wait in camp for our return.
· For the past 10 years I have watched her struggle with her personal balance and standing stability. At first I would watch, as she would tightly grasp handrails to safely descend stairs. Over the past 5 years she has required the use of walking supports and frequently requires the assistance of another to safely use stairs.
· For the past 8 years I have watched a steady decline in her abilities to walk even short distances without becoming fatigued, overheated and exhausted. Our shopping trips to the mall are an activity of the past. Even visiting one store is an activity that must be planned and requires a nap or period of rest before she embarks on even the simplest trip.
· About two and a half years ago, I discussed with YOUR NAME the need to live in a home with wheelchair access. Two years ago she purchased her current single level home in YOUR CITY. Moving was an exhaustive process for her and required the support of many friends to get her packed and settled. It has become apparent since her move that she was fortunate to relocate when she did, as we have seen over the past 2 years an accelerated deterioration in her overall health.
· As a close friend there are times we have tried to see the humor of her disease. One consequence of the progression of her DISEASE is that she is always hot and overheated. There is many a time I transport her by car in mild weather and we are driving with the air conditioner on. As the driver I’m wearing a sweater and freezing and she is sitting next to me fanning her face and complaining about the heat.
· I would describe YOUR NAME’s career of one that required long hours, high pressure and the ability to respond to an employment crisis at any hour of the day. Over the past 10 years I have watched as she has rapidly deteriorated from 70-hour weeks to no longer being able to work.
I remember about 4 years ago when she took a vacation that required her to fly. She missed a connecting flight because they were unable to find a wheelchair. This experience made her realize that vacationing – or long-distance travel of any kind – was now a thing of the past.
Weekends are primarily a time of rest for her, but each Sunday I pick her up for church. After services I drop her back home for a much-needed nap as the outings exhaust her. There are many more examples of how I have seen YOUR NAME’s health deteriorate over the 17 years I have known her. It is safe to say that the progression of YOUR DISEASE has dramatically increased in the last 7 years to the point she spends most of her days at home.
Should you have any additional questions or wish to contact me directly, you may reach me during business hours at XXX-999-9999.


Jane M. Smith
1234 SW Main Street
Anytown XX 12345

My friend knows me very well. It really helps to see yourself through the eyes of someone else. Also, putting what they see down on paper to help you, helps your friends better understand what you are going through (there's something about seeing something in black and white, on paper, that makes it more "real").

She has been like a steady rock, helping me regain my ability to "live well", by knowing, admitting to, and using my strengths to overcome my impairments. Let me give you a few specific examples.

1) My friend and I used to love going shopping. Whether it was to a mall or to some antique stores, or to an Ocean City's tourist stores, we used to shop for HOURS. I cannot do these activities any more. I use forearm crutches to walk at all. I get very hot doing any form of exercise. I get claustrophobic in a store, if I am standing with other people.

So, I have some options. I can pout, cry, feel sorry for myself, deny myself the pleasure of outings with friends, and become a hermit! OR, I can figure out how to do some of the same activities, in a different fashion! First of all, what did I like about shopping? Well, I liked the people, the goods, and the outing with friends. So, how could I recapture what I liked, within the scope of my ABILITIES; NOT GIVE UP because of my DISABILITIES!

Again, my friend was the solution. For a few times, we would go to the mall, and I would just sit and "people watch". But the walking from the car to a place to sit and back again literally wore me out for the rest of the day.

See, my friend knows how stubborn I am. So, one day at the mall, she decided to go to the customer counter and ask if they had wheelchairs for loan. They did, and, with me in a wheelchair, and my friend pushing, we were back to our old times of hours of shoppine! You should have seen our "train": I was pushing a cart while in the wheelchair; my friend pushing me. We were fine going in a straight line, just had problems around corners. The moral of this story is that, by focusing on what my abilities were, instead of my disabilities, I recovered my ability to live well, and enjoy outings!

2) Loosing my ability to drive was probably the biggest challenge for me to face! As you have probably figured out, I am a VERY independent person! I was a Type A personality - probably A+! You can't realize just how much you rely on your ability to be mobile - to get to the grocery store, the bank, the library, the doctor - at YOUR CONVENIENCE rather than having to rely on someone else - until you loose that ability!

Well, my friend, again, realized that I still needed outings from the mother-in-law appartment that I have in my son's home. While the living arrangement really allowed me to focus on my abilities, my friend realized that it could become too "complacent", and that for me to really Live Well, I needed OUTINGS!!

So, she arranged for me to spend a few days with her at her home. There, we could eat out or in - whatever we wanted; we could watch "chick flicks" (my friend, who knows me well, always keeps plenty of kleenex on hand, as she knows that I cry at commercials!); we can get up in the morning and read the paper together over coffee and tea. AND, in the afternoon, we can go shopping, or anywhere else where we can use a wheelchair!

These are but a few examples of how you can achieve a wonderful Quality of Live; you can live well and have outings. You just need to figure out what you like to do; what your abilities are; and figure out how to do it!

Questions and comments, and ideas are always welcomed! Let's hear about your stories of Living Well.

Disability: Decreasing "moving stressers" from a Chronic Illness Self-Manager.

I'm not sure about you, but I HATE to move! You just get your space set up the way you want it, and BANG, you need to pack up your personal stuff and get ready to move; then you have to unpack it all over again!

AND, for those of us who are disabled, the stress of moving can really take a toll on us. As I currently am facing such an event, I thought I'd share with y'all what bugs me, and, as a Chronic Illness Self-Manager, what I am doing to get over what bugs me, and get with the moving!

  1. Fatigue, as I have previously mentioned, is a HUGE factor that adversely impacts most of us. I am taking great strides to ensure that I get as much rest as I need; and, not just at night, but also in short naps during the day.
  2. Being Realistic about what I can and can't do. This is probably the hardest hurdle for me to overcome. Throughout my life - both personal and professional - I have just hated it whenever anyone said "I can't do it!" - usually said in a whiny voice. In my way of thinking, anyone could do anything they set their mind to doing; right? Isn't that what we were taught? And, in most cases, this is an accurate statement. BUT, when you are a Chronic Illness Self-Manager, being realistic about what you can and can't do is a critical coping skill.

For example: I cannot stand for over 2 or 3 minutes at a time. So, I'll need some help getting stuff down from high up, and then I can pack sitting down. I've already figured this out, as I have a stool in my bathroom (given to me by a great friend who knows me, and knows my need to accommodate ways to get things done).

Another example: my cognative skills are much less than they used to be. Now, some of you who have read my blogs may question this, but you haven't seen all of the writing notes, jottings, first, second, and third drafts of all documents used to create the final product. So, unlike the "multi-tasker" that I used to be, who could keep 10 balls in the air at any one time and not drop one, and who could keep all the list of things to do in my head, I now write things down in LISTS. And, do you know just how much I hate this? I NEVER thought that I would stoop low enough to keep lists! Only nerds kept lists, not me. Well, yes me, if I want to get things done! And, I do one or two items from my list each day. Yes, it takes me longer to get things packed than 2 or 3 moves ago, but even the turtle finishes the race. Just remember to take it slow, and pace yourself.

Another example: I have, with the aid of my daughter-in-law, GREATLY sownsized all of my stuff! I've had to rethink about my definition of "sufficiency" (in all things except for books/reading, jewelry, and writing in this blog, of course!). Clothes, nick-nacks, things, papers (yes, I got rid of the dozens of boxes of papers that I had been lugging around that contained work documents going back at least into the mid 1970's!!!) So, I have less to pack this time.

3) Friends are a great help! Do not be shy about asking for help from friends and family. And, when they do help, remember to use music, laughter, and fun to liven things up a bit! Food also works wonders.

4) Doing something special for you each day. Figure out what you REALLY like, and reward yourself with your special treat each day, after your moving activities. For me, 30 minutes of playing with my graddaughter is a real treat! So is taking a shower and letting the water cascade down.

Bottomline, the key in being a Chronic Illness Self-Manager is to be aware - always - about what hwlps and hinders your "symptom impairment of your normal daily activities". If you know your triggers, you can plan on avoiding, mittigating, or overcoming them.

If you have any additional suggestions, I'd love to have you share them. They just might help us all.

I'll be sure to let y'all know just how successful I was in managing my physicality during this upcoming move! I'll be sure to relate what went right, and what I could have done better.

Tuesday, August 16, 2005

PATIENT-CENTERED HEALTH CARE; 21st CENTURY MEDICINE Part #3 (of 3 Parts) Health Care Team's and Patients' NEW Roles and Responsibilities

PATIENT-CENTERED HEALTH CARE; 21ST CENTURY MEDICINE Part #3 (of 3 Parts) Health Care Team’s and Patients’ NEW Roles and Responsibilities

This is probably the longest set of blogs that I will ever do, but I wanted to provide you with as much information on this critical subject as I could, in a timely, summary manner, so that you can read, bookmark, internalize, and become an Expert Patient, a Chronic Illness Self-Manager, and partner with your Health Care Team in a Patient-Centered Health Care system!

Through my process of applying for, qualifying for, and getting Long Term Disability (LTD) and Social Security Disability Insurance (SSDI), I have become and Expert Patient; a Chronic Illness Self-Manager, and have succeeded in partnering with my health care team in a Patient-Centered Health Care system. AND, I did it all without knowing what it was, and how to do it! All I knew, instinctively, was that I had to evolve into these types of Patient, and I had to set up this working relationship with my health care providers, to achieve my goals (essentially, the “WHY”)!

So, after I qualified for LTD and SSDI I set up the
www.disabilitykey.com website, and authored the Disabilitykey Workbook so that others could achieve the same disability financial benefit successes that I had achieved. THEN, when I had the good fortune to partner with my business partners who knew about the Internet and things like “blogs”, I began this blog on the www.disabilitykey.com website.

Believe it or not, it has taken me over 40 hours of work to locate the websites necessary to construct this 3 Part Series in this blog; I have researched literally hundreds of websites, and have culled as much of the salient information that I could, and rearranged it into what I hope is a logical fashion to assist you in your individual transitions.

So, in Parts #1 and #2 we have set the stage for WHY we need Patient-Centered Health Care in the United States, and WHAT Patient-Centered Health Care is. In this blog, we’ll investigate what a Patient-Centered Health Care facility looks like; what a Patient-Centered Doctor’s roles and responsibilities are; and, what a Patient-Centered, Chronic Illness Self-Manager’s roles and responsibilities are.

We’ll finish this blog with a series of questions that you can print out and take with you to conduct your own evaluation of your Health Care Team’s progress along this transition.


Research clearly documents that patients do want patient-centered health care which:
1) 'explores the patient's main reason for the visit, [their] concerns and need for information;
2) seeks an integrated understanding of the patient's world - that is, their whole person, emotional needs and life issues;
3) finds common ground on what the problem is and mutually agrees on the management thereof;
4) enhances prevention and health promotion; and,
5) enhances the continuing relationship between the patient and doctor.'

So, we have agreed that we want this shift/transition to occur. How do we do it? Again, start with the end goals/results in mind, then develop a plan with your health care team to transition to the new Patient-Centered Health Care model.


The Doctor-Patient “contract” in a traditional “doctor/illness-centered” model, from the patient’s point of view:
- Modern medicine can do remarkable things: it can solve many of my problems
- You, the doctor, can see inside me and know what's wrong
- You know everything it's necessary to know
- You can solve my problems, even my social problems
- So we give you high status and a good salary

The Doctor-Patient “contract” in a traditional “doctor/illness-centered” model, from the doctor’s point of view:
- Modern medicine has limited powers
- We can't begin to solve all problems, especially social ones
- I don't know everything, but I do know how difficult many things are
- The balance between doing good and harm is very fine

The new patient-centered health care model contract.
Both patients and doctors know that:
- Death, sickness and pain are a part of life
- Medicine has limited powers, particularly to solve social problems
- Doctors don't know everything: they need decision-making and psychological support
- We're in this together
- Patients can't leave problems to doctors alone
- Doctors should be open about their limitations


Essentially, in collaborative self-management, your role is to say to your patient, "Here's the information I have about (your illness). How can I help you apply this information to your life so that you can manage your disease effectively?" Instead of feeling responsible for patients who have a chronic illness, think of your role as being responsible to your patients—to inform, advise and support them. After all, it's not realistic to think that you can make decisions for your patients or force them to change their behavior. Only they can do these things.

Set the stage for your patients to manage their chronic illness effectively by helping them understand the following facts:

1) Their chronic illness is a serious illness. Patients who don't believe that their chronic illness is a problem will never be motivated to make changes to improve their health.
2) Their actions have consequences. Every decision your patients make—from what they eat to whether they take the elevator or the stairs—has an impact on their health.
3) There isn't one perfect way to treat their chronic illness. The treatment plan that's right for one patient who has their specific chronic illness may not be right for another. Explain all of the available treatment options to your patients so they can weigh the personal costs and benefits of each before committing to a treatment plan.
4) They can change their behavior. Some patients may think of change as an all-or-nothing proposition, or as an event, rather than a process. These mind-sets prime them for failure. Your patients will have a greater chance to succeed if you work together to make their treatment plan manageable by breaking it into incremental goals.

You, as the Expert Patient, Chronic Illness Self-Manager, can expect the following from your Physician in this new Patient-Centered Health Care model.

Your physician is an expert in his or her medical discipline. He or she will:
· Establish a diagnosis for the cause of your problem.
· Make treatment recommendations, explain why the recommendation is made, and explain the risks of any recommended treatment.
· Consider your wishes and preferences in your treatment plan.
· Provide skillful medical procedures.
· Provide support during your recovery. This includes nurses, and other office staff that participate in your care.
· Help you establish realistic expectation for your recovery.
· Ensure that you have actually heard what has been discussed.

In summary, how do clinicians help develop their patients into Effective Self-Managers?

Ø Respect the work done by persons with chronic conditions
Ø Acknowledge patients and families as team members and leaders
Ø Recognize the individual’s strengths and resources
Ø Structure a consultative relationship
Ø Focus on the goals of patients and families
Ø Adopt a health enhancement model of care
Ø Provide opportunity for training/education
Ø ALWAYS REMEMBER that the patient that you are currently seeing may be only one of many patients, but it this individual’s only life


The Patient’s Role:
Patient-centered” means that you take an active rather than a passive role in healing. That means you are willing to do as much work as necessary to facilitate your healing. This will include, but by no means will be limited to:
· Informing your-self about your condition and recommended treatments.
· Participating in decisions regarding your treatment.
· Enhancing the possibility for a successful outcome by following your doctor’s recommendations that can include difficult life-style changes such as stopping smoking, achieving and maintaining optimal weight, physical conditioning, and taking prescribed medications.
· Giving proper attention to other (secondary) health problems such as depression, anxiety, social isolation, etc.
· Reducing stress and depression that are commonly found in people who are living with your chronic illness.
· Maintaining a positive attitude.
· Developing reasonable expectations for recovery.
- Finding the right doctor.
- Communicating and mutual decision-making.
- Understanding and committing to the roles and responsibilities of the physician and patient in the new Patient-Centered health Care model.
- Problem solving and handling conflict.
- Resolving to asking questions about tests, drugs, treatment, surgery and any other advice from your health care team until you feel that you are clear about what is happening, and that you can comply.
- Researching medical literature and talking with your doctor about what you find.

Know how to tell your illness story. Many patients tend to start with a self-diagnosis, “I think I have bronchitis”, rather than plain facts, “I’ve been coughing for two weeks.” Brief, focused facts will usually get the doctor on the right track. It is also strongly recommended that you, the patient, bring in a clear written description of your symptoms to your doctor.
Use concrete examples to explain how the illness’ symptoms affect your daily life’s activities[1]. For example, “I’m getting worse” is less helpful than “We’ve buying milk in quarts because I can’t lift gallons anymore.” Everyday details also help the doctor understand how the medical data translates into real life.

As documented in the Disabilitykey Workbook, it is also a good idea to compile what I call a “Before and After” Matrix. This matrix describes your weekly activities BEFORE your illness’ symptoms greatly impaired your daily life’s activities; and, AFTER, as your life looks today. (Disabilitykey note: If you want to see my actual example of this matrix, write a comment to this blog, and I will post it in an adjunct blog.)
Learn about your illness so you can ask the right questions and help make decisions. Patients who take an active role in their care do better and earn more respect from the doctor. “An informed patient is always the best,” says Donald A.B. Lindberg, M.D., Director, National Library of Medicine, “even though that puts more pressure on us to keep up to date.”
Be willing to demonstrate the attitudes that you want from your doctor. For example, if you would like more give and take in the relationship, demonstrate your own flexibility by offering to negotiate and make concessions. “Patients can be a powerful agent for change of a physician’s behavior,” says William Godolphin, M.D., professor at the University of British Columbia and director of a physician-patient education program.

Accept realistic treatment goals. Many chronic diseases can be managed, but not cured. “In this age of hype, patients have come to expect the impossible,” says Lown. “Doctors frequently grope in the dark, not because they are delinquent in learning, but because the science is not there.”
Becoming an Effective Self-Manager
Ø Recognize your responsibility
Ø Get education and training on your particular chronic illness
Ø Set short and long term goals
Ø Recognize, document, and be able to clearly articulate your strengths and abilities
Ø Develop a support system
Ø Advocate for self and others
Ø Have a purpose
Ø Prepare for health visits, know what you want, get routine tests ahead of time so visit can devoted to discussing results
Ø Focus on key issues, write out questions in advance, needed refills
Ø Develop a team and a system for records– timeline, providers, symptoms, medications
Ø Teach your doctor about how to be a healer

The following section is directed at Patients and their Health Care Teams in evaluating their progress along the transition to a Patient-Centered Health Care system.

So How Does Your Practice Rate?
Answer these three questions to better understand where your team's practice falls on the spectrum of patient- rather than physician/illness- and/or staff-centered care:

Accessibility --When we consider schedule changes or process changes, do we first consider what the patient wishes and what the patient needs ... ... or do we consider what works best for us--the physicians and staff?

Interpersonal --Do I listen to the patient to understand the feelings, perspectives, and desires of the patient and involve him or her in treatment options ... ... or, since I am the trained expert and know what is best, do I tell the patient what to do?

Affordability and Quality- --Do I keep abreast of the quality and cost options of care to provide the patient with the most appropriate choices ... ... or do I simply go with the newest and/or the most expensive approach?

Although our first reaction is to consider patient-centered care only at the team/office or individual practitioner level, a comprehensive assessment must also include the overall organization in which the teams and practitioners operate.

Here's an interesting question for leaders of your medical group or health care organization to consider:

If the three questions listed above were asked of the patients of your organization, are you confident that they would conclude your organization truly puts the patient first?

The Specific Criteria for evaluating individuals and organizations for the Picker Institute Annual Awards for Health Care Teams who have transitioned to the Patient-Centered Health Care model are based upon the dimensions of care deemed important to the patient through “the patient’s eyes.”

Those dimensions are derived from two sources:

* the dimensions of patient-centered care outlined in the classic text, "Through the Patient’s Eyes", and
* the description of what patients should expect from their health care from The IOM Report, "Crossing the Quality Chasm, Simple Rules for the 21st Century Health Care System.”
THE DIMENSIONS OF PATIENT-CENTERED CARE (from: Through the Patient's Eyes)

- Access to Care
- Respect for Patient Values, Preferences, and Expressed Needs
- Coordination of Care
- Physical Comfort
- Emotional Support
- Involvement of Family and Friends
- Information, Communication and Education
- Transition and Continuity

Eight Dimensions of Patient-Centered Care
Patients indicate a need to be recognized and treated as individuals by hospital staff. They are concerned with their illnesses and conditions and want to be kept informed.
- An atmosphere respectful of the individual patient should focus on quality of life.
- Involve the patient in medical decisions.
- Provide the patient with dignity, and respect a patient’s autonomy.
Patients report feeling vulnerable and powerless in the face of illness. Proper coordination of care can ease those feelings. Patients identified three areas in which care coordination can reduce feelings of vulnerability:
- Coordination of clinical care;
- Coordination of ancillary and support services; and
- Coordination of “front-line” patient care.
Patients express a fear information is being withheld from them and staff is not being completely honest about their condition and prognosis. Based on patient interviews, hospitals can focus on three communication items to reduce these fears:
- Information on clinical status, progress and prognosis;
- Information on processes of care; and
- Information to facilitate autonomy, self care and health promotion.
The level of physical comfort patients report has a tremendous impact on their experience. Three areas were reported as particularly important to patients:
- Pain management;
- Assistance with activities and daily living needs; and
- Hospital surroundings and environment.
Fear and anxiety associated with illness can be as debilitating as the physical effects. Caregivers should pay particular attention to:
- Anxiety over physical status, treatment and prognosis;
- Anxiety over the impact of the illness on themselves and family; and
- Anxiety over the financial impact of illness.
Patients continually addressed the role of family and friends in the patient experience, and often expressed concern about the impact illness has on family and friends. Family dimensions of patient-centered care were identified as follows:
- Providing accommodations for family and friends;
- Involving family and close friends in decision making;
- Supporting family members as caregivers; and
- Recognizing the needs of family and friends.
Patients often express considerable anxiety about their ability to care for themselves after discharge. Meeting patient needs in this area requires staff to:
- Provide understandable, detailed information regarding medications, physical limitations, dietary needs, etc.;
- Coordinate and plan ongoing treatment and services after discharge; and,
- Provide information regarding access to clinical, social, physical and financial support on a continuing basis.
Patients need to know they can access care when it is needed. Focusing mainly on ambulatory care, the following areas were of importance to the patient:
- Access to the location of hospitals, clinics and physician offices;
- Availability of transportation;
- Ease of scheduling appointments;
- Availability of appointments when needed;
- Accessibility to specialists or specialty services when a referral is made; and
- Clear instructions provided on when and how to get referrals.

Living with Illness or Disability
- Follow-up care according to guidelines
- Patient experience regarding communication with clinician
- Frequency of routine checkups for illness progression
- Patient involvement in care
- Patient involvement in treatment decisions, including types of treatment.

(Disabilitykey Note: These questions form an amalgam, within each subset, from 4-6 different study questions. The questions chosen by Disabilitykey for this blog appear to cover the broadest range, thus, better for the patient to use when self-analyzing his/her own health care team.[2] )

Measure Category #1: Patient Centered Communication and Caring
Example Survey Items
Specific Measurement Concept: Communication with Health Care Providers

Response Options: Strongly Disagree to Strongly Agree (six point scale)

Thinking about the personal aspects of the care you receive from your regular doctor, how would you rate your doctor’s caring and concern for you in the following statements.

1. My doctor knows we well as a person.
2. My doctor understands what is important to me regarding my health.
3. My doctor always takes my beliefs and wishes into account in caring for me.
4. My doctor always explains things in a way the meets my needs.
5. I feel comfortable telling my doctor about my worries or problems.
6. My doctor understands how my family affects my health.
7. My doctor would meet with members of my family if I thought it would be helpful.
8. My doctor uses her/his knowledge of my community to take care of me.
9. Thinking about my doctor, I would recommend him/her to a friend who wanted someone with an excellent personal manner.
10. When discussing diagnosis and treatment related to my condition , my doctor asks if I would like to include family members in the discussion
11. I have time during my visit with my doctor to ask the questions I would like to ask.
12. I am clear about how to follow my doctor’s orders.
13. I feel satisfied with the way my doctor treats me as a person.
14. My doctor asks about the role of family in my health care.

FOR PEOPLE WITH A CHRONIC CONDITION (same response options as above)

Overall, the help that I have received from my health care team has been appropriate, helpful, useful, and timely, in the following areas:
a. Making clear the specific goals for treating my (condition).
c. Helping me understand what I need to do for my (condition).
d. Helping me understand how to care for myself and how to do it.
e. Keeping me motivated to do the things I need to do for my (condition).

There are many, many additional questions, but this gives you a taste of the type of questions that you, the Expert Patient, the Chronic Illness Self-Manager, the patient in partnership with your health care team in a Patient-Centered Health Care model, should be able to rank consistently as: STRONGLY AGREE!

Again, if you have any questions or comments, please ask them!

[1] Sounds familiar, doesn’t it! For those of you who have purchased the Disabilitykey Workbook, you will see that documenting your symptom impairments on your daily living activities is one the keys to becoming an Expert Patient; a Chronic Disease Self-Manager; and a Patient in partnership with his/her health care team in a Patient-Centered Health Care model.
[2] To see all the questions, refer to Attachment A; Example Measurement Tools for Creating Patient-Centered Care Quality Measures for a National Health Care Quality Report. This Attachment A is an attachment to the FACCT (The Foundation for Accountability) Patient-Centered Care Measures for the National Health Care Quality Report (Defining Patient-Centered Care); by Christina Bethell, PhD; FACCT; May 2000; Copyright © 2001 by The Foundation for Accountability

Monday, August 15, 2005

PATIENT-CENTERED HEALTH CARE; 21st CENTURY MEDICINE Part #2 (of 3 parts) - What is it, cont'd?


In Part #1 of this series of blogs on Patient-Centered Health Care, we discussed Why this approach to health care is needed, and What it is. In this blog, Part #2, we will continue to discuss What Patient-Centered Health Care is. In Part #3, we will describe how you can determine if your health care support team approaches health care in a Patient-Centered approach; you will also be able to identify your roles and responsibilities, and that of your health care support team in a Patient-Centered Health Care approach system.

Consider the following observation about patients who are involved in Patient-Centered Health Care:

An abundance of literature confirms that patients who are more involved in active communications with their doctors, who participate in shared decision-making, and who understand their own responsibilities for managing their health achieve better outcomes and are more satisfied than others.

How many times have we discussed, in various blogs, the same concepts discussed above: “active communications with doctors”; “shared decision-making” (assuming that the patient has taken the time to research and learn about his/her chronic disease); and, “who understand their own responsibilities for managing their health”??

Care that is truly patient-centered considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes the patient an integral part of the care team who collaborates with care providers in making clinical decisions. Patient-centered care puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility.

Patient-centered health care is particularly important for patients who cope daily with a chronic disease. Chronic disease and its manifestations create many predicaments, challenges and fears for patients and families including (but by no means limited to) the following.
1) Decreased functional capacity to continue the things that are meaningful and valuable to them.
2) Loss of independence and control over their lives.
3) Changes in their capacity to continue their roles.
4) Tensions and changes in their familial and social relationships with the threat of abandonment and loneliness when their illness progresses. 5) An increased need for assistance to complete their activities of daily living. This can lead to a fear of being a personal and financial burden to loved ones.
6) Spiritual conflict and loss.
7) Inability/unwillingness to cope with the implications of a life-limiting illness.
8) Difficulty in making decisions about treatment choices.

Ok, we know the need, and agree. Now, how do we, as a society (in America) evolve toward a patient-centered health care model? Patients have more information today about their diseases and treatment options than ever before. But patients have not had tools to help them decide among these various options, and doctors have not had tools to help gauge how acceptable an option might be to a specific patient. As a result, the medical decision made, in hindsight, may not have been the most suitable one.


As we have discussed, America needs the health care systems evolve toward a patient-centered model. Health care has been evolving away from a "disease-centered model" and toward a "patient-centered model." In the older, disease-centered model, physicians make almost all treatment decisions based largely on clinical experience and data from various medical tests. In a patient-centered model, patients become active participants in their own care and receive services designed to focus on their individual needs and preferences, in addition to advice and counsel from health professionals.

As we have discussed in previous blogs, we ALWAYS “start with the end in mind” (advice from Tom Peters) when looking to effect a change. The rest of this blog will discuss patient-centered health care in global, generic, systemic ideas. In Part #3, we get far more specific: What should be the health care team’s roles and responsibilities; what should be the patient’s roles and responsibilities in a patient-centered health care mode.

Patient-Centered Health Care Defined

In general terms, health care is considered patient centered when the processes and culture (attitude and behaviors) of an organization, office, team, or individual practitioner address first and foremost the wants and needs of the patient.

Care that is truly patient-centered considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes the patient an integral part of the care team who collaborates with care providers in making clinical decisions. Patient-centered care puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility.

OK, again, we know generally that we in the United States need and want to transition to a patient-centered health care system. Where are we now? I found the following research results.


Primary Care And Health System Performance: Adults’ Experiences In Five Countries
(Cathy Schoen, Robin Osborn, Phuong Trang Huynh, Michelle Doty, Karen Davis, Kinga Zapert, Jordan Peugh)
(This paper reports on a 2004 survey of primary care experiences among adults in Australia, Canada, New Zealand, the United Kingdom, and the United States.)

In the summary of this report on Adults’ Primary Care Experiences in Five Countries, America was found to have the following outcomes.
Ø Across multiple dimensions of care, the United States stands out for its relatively poor performance.
Ø With the exception of preventive measures, the U.S. primary care system ranked either last or significantly lower than the leaders on almost all dimensions of patient-centered care: access, coordination, and physician-patient experiences.
Ø These findings stand in stark contrast to U.S. spending rates that outstrip those of the rest of the world.

So, in essence, the United States spends more that the rest of the world on health care, is very good with preventative measures, but ranks #5 out of 5 participating countries when it comes to patient-centered health care! Seems that we REALLY have work cut out for us.

In Part #1 blog in this series, we described the 2004 Picker Institute’s Patient-Centered Care Visit Summit’s 12 “audacious goals” or “stretch targets”. If those targets are what we should aspire as a Nation to achieve, how about discussing some process components to get there. Then, in Part #3, we’ll get more specific to a patient and his/her health care team’s roles and responsibilities.

Below, you will find the “10 Simple Rules for the 21st Century Health Care System (a Patient-Centered Health Care System), followed by six essential interactive components of the patient-centered process.

(from” The IOM Report (Institute of Medicine, “Crossing the Quality Chasm”)
1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits.

2. Care is customized and reflects patient needs, values, and choices. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.

3. The patient as the source of control for their care. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making.

4. Knowledge and information are freely shared between and among patients, care partners, physicians, and other caregivers. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.

5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place.

6. Safety is a visible priority. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors.

7. Transparency is the rule in the care of the patient. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based practice, and patient satisfaction.

8. Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events. Care is provided in a healing environment of comfort, peace and support. All Team Members (health care support team members) are considered as Caregivers. Families and friends of the patient are considered essential parts of the care team.

9. Continuous decrease in waste. The health system should not waste resources or patient time.

10. Cooperation among clinicians is a Priority. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care. All Caregivers cooperate with one another through a common focus on the best interests and personal goals of the patient.

Six essential interactive components of the patient-centered process are described below. Each health care organization looking to transition to the patient-centered approach must address these processes.
1. Exploring both the disease and the illness experience:
the traditional approach of history taking, physical examination to produce a differential diagnosis.
Illness: at the same time the physician should respond to cues as to what the patients ideas, feelings and fears are concerning this illness experience and the effect it has on functioning. Knowledge of past illness experiences and the effect of the family on previous illnesses can be useful to gauge the degree of disease the patient is going through.
The physician usually maneuvers back and forth between the doctor/disease and the patient/illness agendas.

2. Understanding the patient as a “whole person”:
What do you the physician know about the patient’s life in terms of development and experiences and how does this illness impinge on it? It may help to answer the question why does the patient have these symptoms now? Previous contacts with the patient over the years can provide the physician with valuable insights into the present problem (a mutual investment plan between doctor and patient!).

3. Finding common ground:
An effective management plan requires cooperation between the physician and patient in the areas of a) the nature and priorities of the problems, b) the goals of treatment, and c) the roles of the doctor and the patient. Finding common ground rather than bargaining or negotiating requires an understanding of the patient’s ideas, fears and expectations regarding the problems.

4. Incorporating prevention and health promotion:
Health promotion, disease prevention and risk reduction issues should always be incorporated into every contact with the patient whenever possible not just at health maintenance visits. An effective patient-centered relationship enhances the patient’s acceptance of suggestions from the physician for appropriate lifestyle modifications. The provision of optimal continuing and comprehensive care requires this approach and should be supported with a record system (i.e., flow sheets for chronic diseases) and office protocols (such as computer reminder systems) that facilitates this philosophy .

5. Enhancing the doctor-patient relationship:
At every visit the physician strives to build an effective long-term relationship with the patient so that the patient sees the benefit of this growing mutual investment plan between the two. It should be noted that different patients need different approaches such as the dependent patient in need of extra support versus the assertive involved patient. The physician should always monitor his/her own feelings regarding the relationship in terms of sharing power and transference/counter transference issues for instance.

6. Being realistic:
Physicians should always manage their time so that they can provide optimal patient care. This requires priority setting, resource management and teamwork. The strategy taken at one consultation may well be tempered by the number of patients still waiting to see the doctor. Physicians should also respect their limits of emotional energy.

Stay Tuned for Part #3: Your and your Health Care Team’s Roles and Responsibilities in establishing and maintaining an effective and efficient Patient-Centered Health Care process.

PATIENT-CENTERED HEALTH CARE: 21ST CENTURY MEDICINE Part #1 (of 3 Parts) – WHY do we need it; WHAT is it?

PATIENT-CENTERED HEALTH CARE: 21ST CENTURY MEDICINE Part #1 (of 3 Parts) – WHY do we need it; WHAT is it?
This blog discusses the WHY and the WHAT of Patient-Centered Health Care. In the next blog, we will continue to discuss the why and what, using additional information. In Part #3 we will discuss HOW both patients and doctors can transition to this 21st Century Medicine concept. Wherever possible, I have copied directly from the current research documents, and will provide footnotes to that source. If you are interested in expanding your knowledge of this topic, I recommend that you seek out the source and read it. If you cannot find it, make a comment to this blog (and/or to Parts #2 and #3) and I’ll get the reference to you.

The research on this subject covers many factors. I have limited the information to that which discusses the patient and the doctor only.

The best way to use this information is to read it through and think about it. Then when you get a chance to review Part #2 of this Patient-Centered Health Care blog, you will find questions that you can ask yourself about whether or not you are participating in patient-centered health care with your doctor.

Less than 10 percent of medical decisions are made with participation of a fully informed patient.[1]

Physicians are being encouraged to involve their patients in decisions about medical tests and procedures. However, many of them have not embraced the concept in day-to-day office practice, according to a study supported in part by the Agency for Healthcare Research and Quality (HS07289). It found that less than 10 percent of medical decisions were actually made with the participation of a fully informed patient (i.e., doctors provided patients with the pros and cons of the test, procedure, or medication regimen; informed them of their options and any side effects; and helped them reach an individualized decision about the right course to take).

[2]An estimated 50% of the health status of the population and the majority of health care costs in America are accounted for by the presence and level of management of chronic illness and the lifestyle behaviors such as smoking, alcohol use and unhealthy diet that often contribute to these chronic conditions. (IFF 2000, Fishman 1997)

Studies show that up to one half of all recommended treatments are not followed by patients (Dimatteo 1994) and that the greatest weaknesses of existing disease management programs for people with chronic conditions are that they do not use modern, patient centered self management and support strategies. (Wagner 1999, Center for the Advancement of Health 2000, Goodall 1992, Sobel 1995) Instead these programs often focus only on providing information and do not address patient understanding and use of this information or the psychosocial and contextual factors in their motivation and ability to do so.

Statistics on patient nonadherence are big. "By and large, the research indicates that at least half the patients who've been given a prescription don't receive the full benefit of the drug because of not taking the drug at all, not taking the right dosage or stopping prematurely," says Debra L. Roter, DrPH, a professor of health policy and management at Johns Hopkins University School of Hygiene and Public Health. The figures for certain chronic diseases are just as scary, according to researchers. Between 40 percent and 50 percent of diabetic patients don't abide by their medication regimens. The comparable figure for hypertensive patients is 40 percent.

One study estimated that roughly 6 percent of hospital admissions -- almost 2 million a year -- could be traced to nonadherence.

A survey commissioned by Upjohn Co., for example, determined that 20 percent of the respondents had failed to have a prescription filled during the preceding 12 months. Of these individuals, 51 percent said they didn't think they needed the medication. Another 21.7 percent said they simply didn't want to take it. Similar findings surfaced in a survey on unfilled prescriptions sponsored by the American Association of Retired Persons (AARP). Twenty-one percent of the respondents thought the medicine wouldn't work. Side effects worried 22 percent. The issue of affordability arose for only 10.5 percent and 14 percent of patients in the Upjohn and AARP surveys, respectively. This suggests that nonadherence arises less from pocketbook issues than from patients' beliefs and attitudes.

Finally, and most shocking to me, when you study the traditional Illness-Centered approach to medical care, you find statistics like the following: A 1984 study of physician-patient interactions showed that a physician will listen to a patient’s concerns for an average of 18 seconds before interrupting.

The following reference is fantastic! It really discusses the need for American Health Care to evolve to Patient-Centered Health Care.

FACCT—The Foundation for Accountability
Patient-centered Care Measures
for the National Health Care Quality Report
(Defining Patient-centered Care)
Christina Bethell, PhD
May 2000
Copyright © 2001 by The Foundation for Accountability

Definition of Patient Centered Care
The preliminary definition of patient centered care set forth by the Institute of Medicine Committee on the National Health Care Quality Report is:

Health care that respects and honors patients’ individual wants, needs, and preferences, and that assures that individual patients’ values guide all decisions.

This definition requires the systematic inquiry about and responsiveness to patients’ needs, wants and preferences at both the clinical and system level. However, it does not fully recognize the importance of the partnership-based style of health care that is the true hallmark of patient centered care. As such, an expanded definition is offered as the basis for the identification of candidate patient centered care quality measures for the National Quality Report on Health Care:

Health care that establishes a working partnership with patients and their families to ensure decisions are made that respect and honor patients’ wants, needs, and preferences and to ensure that patients have the education and support they need to act as a central resource in their own health and/or the health of their family.

Using this definition, a practice of patient centered care will incorporate into each health care encounter explicit communication strategies to elicit, understand and take as relevant, patients’ own understanding of their needs, wants, preferences and values, even if, and perhaps especially if, they run counter to the those of their providers.

When applied to health care for people with an established chronic condition, who are at risk for disease or who experience an acute event such as infection or injury, this definition of patient centered care will require many health care providers to shift to a collaborative model of care whereby they work in partnership with patients and their families in defining health care needs, making health care treatment decisions, selecting and implementing treatments and managing care over time.”

Patient-Centered Care 2015: Scenarios, Vision, Goals and Next Steps

In February 2004, the Picker Institute convened the Patient-Centered Care Vision Summit. A group of 27 key leaders used these scenarios as input to a shared vision for patient-centered care. In using the scenarios, participants observed that what is most likely is not the futures they want.

The vision statement they proposed for a community of individuals is as follows:
Our vision of care is that each of us is in charge of our health. Healthcare providers are there to help us gain the skills and knowledge to enable us to take charge. Each of us gets the care we need, not less and not more. Our care is efficient and respectful of the value of our time. It integrates ethics and compassion with science. Each of us learns from an early age to be healthy throughout our lives. When we are sick, our care reduces fear and aids healing. When we live with chronic disease, our care and our own health practices bring quality to life. Our care at the end of life honors our values. Our caregivers treat us with respect even if we do not know what they know or do not come from the same background.

The Summit then developed “audacious goals” or “stretch targets”. These twelve provide significant opportunities for making patient-centered care the norm and the standard of care. These audacious goals are as follows.

1. Patients Share in Decision Making. By 2015, at least 50 percent of patients will participate in shared decision-making processes that lead to a measurable
improvement in decision quality. We will have developed, implemented, and responded to an array of measures of “concordance” between healthcare interventions and what people value, first as individuals and then as communities.
2. Enable Patients to Direct Their Care. By 2010, 80 percent of patients and families believe they have the knowledge, supports and confidence necessary to direct their own health and healthcare.
3. Patients Use Performance Data to Choose Supportive Providers. By 2010, patients will be able to choose their healthcare providers based on comparative performance data that shows how well providers support the patients and their family’s role in care.
4. Measure and Reward Providers for Achieving Patient Empowerment. By 2010, health professionals and healthcare facilities will be rewarded according to their patients’ sense of empowerment and self-efficacy, which will be measured routinely.
5. Make Patient Perspective a Priority in Policy and Planning. By 2010, all policy and planning decisions will consider patient perspective first. Patients and/or their families will be present and actively participate in all decision-making bodies.
6. Adopt (Institute of Medicine) IOM’s Simple Rules for Healthcare. By 2015, access, quality and safety will be the organizing principle of every community’s healthcare. Communities nationwide will implement IOM’s Simple Rules for the 21st Century Healthcare System in every organization, institution and care setting.
7. Provide Access to Patient-Centered Care Information and Care. By 2015, everyone will have information and access to patient-centered healthcare and 50 percent will receive their care through a Picker patient-centered care practice.
8. Include Patient-Centered-Care Tenets in Licensing Requirements. By 2015, every health professional licensed to practice in the U.S. is competent, agrees with the major tenets of patient-centered care, and is honest in compliance with standards agreed to between the public and the health profession. Healthcare professionals who cannot or will not comply are removed and no longer practice.
9. Train Healthcare Professionals to Support Patients. By 2010, all healthcare professionals will receive training in how to support patients and enable them to play an active role in their care.
10. Promote Joint Contracting for Care and Prevention in Diabetes. By 2015, all patients with Type 2 Diabetes will “contract” or “sign” a joint care and prevention agreement with their caregivers. (Disabilitykey note: we’d like to see this “contract” apply to all chronic illnesses, to be an agreement between all Chronic Illness Self-Managers and their caregivers.)
11. Provide Healthy Living Skills Education. By 2015, all school-age children will receive education to enhance lifelong skills for living a healthy life.
12. Anticipate Late Life Care Needs. By 2015, education will be available to everyone 50 years and older on realistic scenarios regarding health, long-term care, and the end of life of life through videos, CDs and interactive media.

This next reference from the Johns Hopkins School of Medicine provides us with a great comparison of the “traditional” illness (pathology) focused health care as compared to the desired patient centered (they call it “Health Enhancement”) focused health care. (Disabilitykey note: I have paraphrased some of the criteria to make it easier to understand, using words we’ve used before.)

Who is in Charge? Or
Taking Charge!
Stephen T. Wegener, PhD
Department of Physical Medicine and
Johns Hopkins School of Medicine

Illness or Pathology focused Health Care
1) Focused on germ theory.
2) Diagnosis means identifying the pathology involved.
3) Treatment method is treating the deficit (germ).
4) Goal is to return the patient to baseline functioning.
5) Patient is characterized as a passive “victim”.

Contrast that picture to this one.

Patient-Centered (Health Enhancement focused) Health Care
1) Focused on human potential (of the patient).
2) Diagnosis means identifying the patient’s strengths.
3) Treatment method is building on the patient’s strengths.
4) Goal is enhancement of functioning.
5) Patient is a Chronic Disease Self-Manager (Active manager patient).

In otherwords, “Health Enhancement” (as Johns Hopkins calls it) and the Patient-Centered approach to health care really represents part of an evolution in health care that has expanded our focus to:
– Eliminating pathology;
– Functional Status;
– Quality of Life; and
– Enhancement of functioning/well-being.

[1] See "Informed decision making in outpatient practice: Time to get back to basics," by Dr. Braddock, Kelly A. Edwards, M.A., Nicole M. Hasenberg, M.P.H., and others, in the December 22, 1999, Journal of the American Medical Association 282(24), pp. 2313-2320.

[2] Copyright © 2001 by The Foundation for Accountability
[3] Copyright © 2001 by The Foundation for Accountability
[4] Copyright © 2004 by the Picker Institute
Permission is granted free of charge to any organization or individual working to advance patient-centered care to use the text of the scenarios, vision statements and audacious goals for education and planning purposes.
Reprint of this material should include the statement, Reprinted with Permission from Patient-Centered Care
2015: Scenarios, Vision, Goals & Next Steps, Copyright © The Picker Institute.
[5] Institute of Medicine’s Simple Rules for the 21st Century Health Care System, “Crossing the Quality Chasm” report. The rules are: Care is based on continuous healing relationships. Care is customized according to patient needs and values. The patient is the source of control. Knowledge is shared and information flows freely. Decision-making is evidence-based. Safety is a system property. Transparency is necessary. Needs are anticipated. Waste is continuously decreased. Cooperation among clinicians is a priority.

[6] John’s Hopkins School of Medicine

Wednesday, August 10, 2005

DISABILITY and WORKING (Part #2); Making the Systems Work For You


In yesterday’s blog, we discussed the JAN – the Job Accommodation Network, and just how valuable a resource that link is to those of us who are disabled, yet still working.

Also in yesterday’s blog, we left me as the VP-HR for an entire Ship Repair Yard. As you can probably imagine, my job description was very extensive. For example, consider the following.

Ø I was responsible for, and/or did all the work for Employee Relations; Labor Relations; compensation; benefits; Workers Compensation (averaging 300-400 incidents per year). We had a Training Center, on site that was my responsibility. I also personally handled all of the Employment litigation. This meant representing the Shipyard in court and other legal/labor proceedings.
Ø Each day was crammed full of meetings, crises, activities, etc.
Ø The job required extensive patience, experience, maturity, tact, expertise, and the ability to remain calm in the middle of multiple crises.

So, I received the conclusive diagnosis, and, probably like you, I thought I could still do my job. The day I knew that I had to cut back will remain always in my mind: I had a Craft Manager (Painters) and his Union Business Agent and Shop Steward in my office, very agitated; I had the Safety Director and an employee out in the hallway; I had the Executive VP for Production on my cell phone; and I had the Owner on my land line (phone). All were talking (yelling) at me at once. Now, this was typical, but for the first time I froze; I could not multi-task effectively to provide the customer service to all of these clients in the manner that they deserved. My vision left (big black holes in my right eye; “heat waves” in my left – Optic Neuritis); my MS had reached the stage that I was too tired and too befuddled to effectively manage the work.

So, what was I to do? Now remember, even w-a-y back then I was an Expert Patient; a Chronic Disease Self-Manager; and practiced Patient-Oriented health care with my Doctors. It is probably not a surprise to you that I also was a very collaborative Executive with my fellow Ship Repair Yard Executives, including the Owner. I knew that he would work with me to come up with a plan to allow me to continue working to the full extent of my capabilities, but I NEEDED TO ACCEPT AND TAKE FULL RESPONSIBILITY for describing WHAT that looked like, HOW that would happen, WHO needed to do what, WHEN all steps needed to happen, and HOW to ensure that the process followed all relevant federal, state, local laws, company policy, vendor regulations, etc.

Sounds like a big job, doesn’t it? Well, looking back, it was. But, in the moment, at the time, I did what I recommend that you do as you begin the process. DO NOT think of the entire process; focus on the end result, always keep it in mind, but set up a plan, stick to the plan, and take things one step at a time. (Just the way one eats an elephant – one bite at a time!)

AND, you get a big advantage over what I was facing! I’ve been there before you; I faced the problem, worked out the following process, and have been blessed with the ability to share it with you. Hopefully, you too will be successful with your own journey.

The Journey From Working Full Time to Working With a Disability.[1] (Note: this blog is only describing the steps in the process. For greater detail and copies of the documents in the process, they, and the actual examples I used, can be found at the www.disabilitykey.com website, in the Disabilitykey Workbook.)

Step #1: Know where you are going, and begin your journey in enough time to keep control over the process of getting there!
Ø Recognize that the end goal is to create a process that will be a “win-win” for both you and your company. The goal for the company is to retain you, a valuable employee, and your knowledges, skills and abilities. Define this goal for yourself; do you want to go on LTD (long term disability); do you want to retain your income at a level amount; what do you want?
Ø Start this process early enough so that you retain control over your future, as I did. Do NOT wait until your supervisor comes to you and says that you have a problem – you aren’t getting your work done, etc. At that time, you have already lost control, because your supervisor would have talked to your Human Resources Department, and they would have attempted to set up a plan for you. Now, not to sound too paranoid, but in my experience, most HR folks are woefully deficient in knowing what to do in these circumstances (yes, I know, another challenge for me to accept, and I do have plans to address this situation); and, any plan that they would/could come up with probably would not benefit you as well as the company.
Ø DO NOT TALK to your supervisor or to Human Resources until after you have developed your plan.

Step #2: Gather up all relevant documents.

Ø Collect all copies of your benefit Summary Plan Descriptions (SPD).
Ø Get a copy of your Company’s Employee Handbook.
Ø Get your Job Description. Also, go to your Human Resources department, and see if you can get copies of other job descriptions for jobs other than your own that you believe that you might be able to do, in spite of your condition’s symptom impairments.
Ø Access the JAN website and print out the information about your specific condition. Look particularly at the examples other companies have made as reasonable accommodations for employees with symptom impairments similar to yours. It is important to do some research here. Look at conditions similar to yours, and the symptom impairments for those conditions. Continue to research until you find just what matches YOUR specific situation.

Step #3: Specifically, set your goal.
Ø It is easier in the following steps to have an actual example to work with, so I will use my own. (NOTE: as you begin your process and have questions, remember that you can ask them as a comment to this blog and get not only my response, but those of thousands of your new best friends in your exact circumstances! And, as you ask questions and receive answers, you will also be helping others like yourself. So, y’all unshy people, ask and answer away!)
Ø MY SITUATION: 1) I decided that I still had something to offer to my company, in a lesser position; 2) I wanted to go on LTD yet still work; 3) I wanted to maintain my pay, if I could figure out how to do it; 4) I wanted to keep my health insurance and other benefits (like vacation and sick leave) benefits. THIS BECAME MY GOAL.
Ø MY RESULTS: As a result of using this process, I was successful in working through my LTD elimination period of 6 months (180 days) and 1 year on LTD for my own occupation for a year, at a lesser job, at full pay, while maintaining my health insurance and other company benefits.

Step #4: List the questions you need to answer in support of your goal, and answer them by researching your previously gathered documentation.
Ø I started with goal #2 first, because I needed to know what “triggered” my LTD. It may not surprise you, but it REALLY surprised me that what triggered LTD eligibility wasn’t having a disabling disease/condition or accident, but a pay cut specifically caused by symptom impairment of that disease/condition or accident on my ability to perform the essential duties of my job! Once I knew this, it made sense, as LTD is an insurance policy; its purpose is to augment pay lost due a “pay-impacting disability”! DUH! Now all I had to do is figure out just how much of a pay cut triggered the eligibility.
Ø In my case, it was a 20% pay cut. BUT, I also discovered that my LTD had a 180 day “Elimination period” that I would need to fulfill before being eligible to receive any money from my LTD insurance. Also, since my LTD insurance paid 60% of my base pay, if I wanted my pay to continue at 100%, I needed to figure out how to get the 40% back while on LTD.
Ø As for goal #4, I read in my Employee Handbook that I had to keep working at least 32 hours per week to retain eligibility for my company’s health insurance plan.
Ø For goal #3, if I was only going to work for 32 hours, and going to 32 hours per week equated to a 20% pay cut! BUT, as I wanted to retain my pay, I had to figure out how to get income for the other 8 hours per week.
Ø So, if you are paying attention, I needed to work my own job for 180 days (six months) for 32 hours; I needed documentation that what caused me to take this action was my condition’s symptom impairments; I needed to figure out how to “earn back” income for the additional 8 hours per week; and, I needed to figure out what job(s) I could go to after my LTD elimination period for 60% of my base pay paid by LTD insurance, and what I could do in partnership with my company that would pay me the additional 40% of my base pay to get it back up to 100%.
Ø First of all, it WAS NOT EASY AT ALL to literally wring information out of my LTD insurance Carrier! When I started asking them questions, their first reaction was why would I want to continue to work? No one ever had before, why should I? It took me about a month to go through enough folks to get the answers to my questions, but it should not be a shock to y’all that I prevailed. Here’s what I learned.
1. My specific LTD plan said that I could earn income during the elimination period, and for the first year of coverage, as long as the amount earned, added to the LTD amount, did NOT EXCEED the amount of my full pay prior to triggering LTD.

2. The 20% pay cut action that triggered my LTD was for actual “work” pay; it did not cover sick and vacation pay. So, I worked it out with my company[2] that I was going to keep my current job and pay during the 180 day LTD elimination period. Each week I would get a check cut from payroll for 32 hours “worked”. I then would get a check for 8 hours of sick and/or vacation pay. The 2 together kept my pay whole; the process complied with my LTD requirements, and met my stated goals. (As an aside, this is another reason why it is a good idea to keep a “bank” of useable sick and vacation pay. Also, my timing was such that my 180 days covered 2 different calendar years, and our company had the policy of “granting” all vacation time at the beginning of each calendar year. This was how I was able to use the 28 days of combination sick and vacation time to augment my work pay and keep my “total” pay complete.)
3. At the end of the 180 day elimination period, I accepted another job that my company, my doctors, the LTD insurance company and I agreed that I could perform.[3] Again, keeping my end goals in mind, and knowing that my LTD insurance would pay me 60% of my base pay, and I wanted to continue to earn benefits, I negotiated a position that would allow me to work for 32 hours a week, in a contributing capacity, that paid 40% of my base pay. As you can probably see, this arrangement was GREAT for both me and for my company.

Well, folks, this had again been a long blog, but I hope that it will be helpful for you. GOOD LUCK!!!
[1] Note: This process does NOT cover working while on SSDI, nor does it cover going back to work FROM SSDI coverage. If there is interest in those processes, let me know and I’ll create them for you.
[2] Actually, I did an entire proposal for my Company after I did all of the research, and had all of the answers. It included my goals, what I had learned, the steps I needed to take, what Jobs I thought I could do, the entire kit and caboodle as my kids would say. Again, it is this “Expert Patient”, being in control, doing the work ahead of time that got and keeps getting me results!
[3] Again, the process of working with your Doctors and completing what is called a Residual Functional Capacity analysis and all that this entails to first qualify for LTD, and, next, to qualify for a job you, your company, your doctors and the LTD company are OK with is covered in great detail in the Disabilitykey Workbook.

Prescription Prior-Approval APPROVED IN RECORD Time by Health Plan!!!


My doctor's office just called to tell me that his/my "Pain Medication Prior Authorization" has been approved IN RECORD TIME - JUST under 2HOURS!!!

His assistant says that they had NEVER had such a speedy response; it usually takes a minimum amount of 72 hours to get a response; not 2 hours from fax to the Health Insurance Company, and receipt of approval!

I asked her what was faxed to the Health Insurance Company, and she said that my Doctor included my statement to him, along with his copy of my "Symptom Impairment Matrix" (covered in detail in the Disabilitykey Workbook). I asked her what was different about this case that led to such a speedy turn-around. She replied that, without a doubt, it was the specificity and detailed information provided my me, the patient, to my Doctor.

So, the process does work! I told you I'd keep you updated, and I have. For those of you new to this blog, read the original one 2 days ago for the process mentioned here.

Let's hear some more success stories from the rest of you!

Tuesday, August 09, 2005

DISABILITY and WORKING; JAN (Job Accommodation Network) BEST RESOURCE for Disabled Workers!!!

JAN - the Job Accommodation Network is, without doubt, the absolute best resource and link for anyone who is disabled, who is facing becoming disabled, and who is still working! The purposes of this blog are:
  • to describe what this Resource is;
  • to give you an example of what types of information it can provide for you;
  • to give you an example (from my own experience) of how you can trigger the ADA (Americans with Disability Act) to continue working as your company provides you with "reasonable accommodations"; and,
  • to give you a link to this very valuable website.

OK, let's say that you have just been told by your Neurologist that the series of conditions that have been making you miserable for over the past 35 years really are the result of Multiple Sclerosis (MS). My first reaction was, OH DARN!!!

At this point in time, I was struggling to keep 2 kids in college, and was working in the best job that I had ever had! I was the Vice President of Human Resources for a Ship Repair Yard. My staff and I provided Human Resorces services to over 2,500 employees in 11 crafts (Unions) running a 24 (hour)/7 (days) week operations. (Note: you can see more about me by going to the "About Us" section of the www.disabilitykey.com website.)

My next reaction, since I am an ingrained "control freak", I decided to become an Expert Patient, even though I would not discover that phrase until over a decade later. If I was to become a Chronic Disease Self-Manager (again, I would not discover that phrase until over a dacade later) I needed to know all about Multiple Sclerosis, its symptoms, and, for whatever symptoms I had, their explicit impact on me. For, you see, my wonderful Doctor and I had been practicing Patient-centered health care (another yet-to-be-discovered concept) for years up to that point.

AND, since I still had bills to pay, two kids to keep in college (and those of you who have experienced this, you KNOW how expensive college is these days) I needed to keep working. But, my job skills were becoming increasingly more impacted by my MS symptoms. I knew that I must research, in addition to the disease, the concept of working while disabled.

Here, in a nutshell, is what I discovered. (By the way - I very much wish that there had been information like this for me to access when I needed it; that's one of the reasons that I am so passionate about providing the information to y'all, so that you can use it in your own unique situations.)

  • I learned that there was a federal law called "ADA". (OK, truth time; I already knew about this law as a Human Resources professional; what I mean to say, is that now I knew about the law as a DISABLED PERSON. Believe you me, the two "knowings" are as different as are night from day! One is academic, the other is experiential. It is the very nature of my experiential knowledge about disability and other "stuff" that fires me up to share the information with you so you don't have to recreate the wheel.)
  • Here is how the JAN describes WHAT the patterns and pracatices of a Company's employment nondiscrimination policies are under the ADA:

" The ADA prohibits discrimination in all employment practices, including job application procedures, hiring, firing, advancement, compensation, training, and other terms, conditions, and privileges of employment. It applies to recruitment, advertising, tenure, layoff, leave, fringe benefits, and all other employment-related activities."

  • This is how the JAN describes WHO is covered by the ADA:

"Employment discrimination is prohibited against "qualified individuals with disabilities." This includes applicants for employment and employees. An individual is considered to have a "disability" if s/he has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment. Persons discriminated against because they have a known association or relationship with an individual with a disability also are protected."

  • Please note the sentence in red ink, and praticularly the words in bold that are larger. It is very important that you understand that you need not just "have" a physical or mental impairment, that/those impairment(s) must substantially limit one or more major of life's activities, and, furthermore, you must have documentation of that impairment ( and/or "be regarded as having such an impairment", which basically means that the impairment and it's limitations must be documented).
  • It is this information in red ink that made me realize the great truth about working and disability: I had to do the work myself to determine what my impairements were, and what activities they impacted; I had to become that Expert Patient who was also an Expert Disabled Worker! Here's how the JAN describes a "qualified individual with disabilities":

"A qualified individual with a disability is a person who meets legitimate skill, experience, education, or other requirements of an employment position that s/he holds or seeks, and who can perform the "essential functions" of the position with or without reasonable accommodation. Requiring the ability to perform "essential" functions assures that an individual with a disability will not be considered unqualified simply because of inability to perform marginal or incidental job functions. If the individual is qualified to perform essential job functions except for limitations caused by a disability, the employer must consider whether the individual could perform these functions with a reasonable accommodation. If a written job description has been prepared in advance of advertising or interviewing applicants for a job, this will be considered as evidence, although not conclusive evidence, of the essential functions of the job."

  • Next step, get a copy of the Job Description for your job. The job description should detail what is called "the Essential Duties (or Functions) of the Job". (Note: a copy of a Job Description that has such essential duties described, and the process of how to get one from your company's Human Resource department can be found at the www.disabilitykey.com website in the Disabilitykey Workbook. This Workbook is an "e-book" of over 100 pages with How-To's and lots of forms and examples. It can be purchased for a minimum cost.)
  • OK, you know your symptoms and their impacts upon you, and you have detailed them (once again, how to do this is covered in the Disabilitykey Workbook). Now you have to look at the Job Description for your own Job, and decide what you can and can't do.

OK, this is really hard stuff to do. That's where the JAN comes in that is so helpful! It has a link on the left hand column called "Accommodation Toolbox". If you click on this box, it will take you to a page with a wealth of information. Scroll down about an 15% of the page and you will find a section entitled "Accommodation Ideas". When you click on this section, you will find an index of illnesses/conditions, with some great information for you. You will need to understand accommodation ideas to

  • Here's what the JAN has to say about "Reasonable Accommodations", and about some accommodations applicants and employees may/can need.

" Q. What is "reasonable accommodation"?
A. Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.
Q. What are some of the accommodations applicants and employees may need?
A. Examples of reasonable accommodation include making existing facilities used by employees readily accessible to and usable by an individual with a disability; restructuring a job; modifying work schedules; acquiring or modifying equipment; providing qualified readers or interpreters; or appropriately modifying examinations, training, or other programs. Reasonable accommodation also may include reassigning a current employee to a vacant position for which the individual is qualified, if the person is unable to do the original job because of a disability even with an accommodation. However, there is no obligation to find a position for an applicant who is not qualified for the position sought. Employers are not required to lower quality or quantity standards as an accommodation; nor are they obligated to provide personal use items such as glasses or hearing aids.
The decision as to the appropriate accommodation must be based on the particular facts of each case. In selecting the particular type of reasonable accommodation to provide, the principal test is that of effectiveness, i.e., whether the accommodation will provide an opportunity for a person with a disability to achieve the same level of performance and to enjoy benefits equal to those of an average, similarly situated person without a disability. However, the accommodation does not have to ensure equal results or provide exactly the same benefits. "

So, I now know my symptoms and their impacts; I know about the ADA, and about something called "reasonable accommocations". I have a copy of my Job Description, and am now trying to compare "ME" to the job's Essential Duties.

Again, here's where the JAN is soooooo valuable. Here's the information, copied directly from JAN about Multiple Sclerosis. Look at how detailed and varied the information is!


"Multiple Sclerosis (MS) is a chronic disease of the central nervous system. MS is often characterized by a pattern of exacerbation and remission. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. Possible symptoms include fatigue, loss of coordination, muscle weakness, spasticity, numbness, slurred speech, visual difficulties, paralysis, muscle cramps, bladder or bowel problems, and sexual dysfunction.

There are an estimated 250,000 to 350,000 people with MS in the United States. Because most people develop MS between the ages of 20 and 40, many are likely to be employed when first diagnosed. The following is a quick overview of some of the job accommodations that might be useful for people with MS. For a more in depth discussion, access our publication titled “Accommodating People with Multiple Sclerosis” at http://www.jan.wvu.edu/media/MS.html and the Searchable Online Accommodation Resource (SOAR) at http://www.jan.wvu.edu/soar/MS.html. To discuss an accommodation situation with a consultant, contact JAN directly at 800-526-7234 (V/TTY) or

1) What symptoms or limitations is the individual with MS experiencing?
2) How do these symptoms or limitations affect the person and the person's job performance?
3) What specific job tasks are problematic as a result of these symptoms and limitations?
4) What accommodations are available to reduce or eliminate these problems?

5) Are all possible resources being used to determine possible accommodations?
6) Has the employee with MS been consulted regarding possible accommodations?
7) Once accommodations are in place, would it be useful to meet with the person with MS to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
8) Do supervisory personnel and employees need training regarding MS, other disability areas, or the Americans with Disabilities Act?


Activities of Daily Living:
· Allow use of a personal attendant at work
· Allow use of a service animal at work
· Make sure the facility is accessible
· Move workstation closer to the restroom
· Allow longer breaks
· Refer to appropriate community services

Cognitive Impairment:
· Provide written job instructions when possible
· Prioritize job assignments
· Allow flexible work hours
· Allow periodic rest breaks to reorient
· Provide memory aids, such as schedulers or organizers
· Minimize distractions and provide more structure
· Allow a self-paced workload
· Reduce job stress

· Reduce or eliminate physical exertion and workplace stress
· Schedule periodic rest breaks away from the workstation
· Allow a flexible work schedule and flexible use of leave time and work from home
· Implement ergonomic workstation design
· Provide a scooter or other mobility aid if walking cannot be reduced

Fine Motor Impairment:
· Implement ergonomic workstation design
· Provide alternative computer access
· Provide alternative telephone access
· Provide arm supports
· Provide writing and grip aids
· Provide a page turner and a book holder
· Provide a note taker

Gross Motor Impairment:
· Modify the work-site to make it accessible:
§ Provide parking close to the work-site
§ Provide an accessible entrance
§ Install automatic door openers
§ Provide an accessible restroom and break room
§ Provide an accessible route of travel to other work areas used by the employee
· Modify the workstation to make it accessible:
§ Adjust desk height if wheelchair or scooter is used
§ Make sure materials and equipment are within reach range
§ Move workstation close to other work areas, office equipment, and break rooms

Heat Sensitivity:
· Reduce work-site temperature
· Use cool vest or other cooling clothing
· Use fan/air-conditioner at the workstation
· Allow flexible scheduling and flexible use of leave time
· Allow work from home during hot weather

Speech Impairment:
· Provide speech amplification, speech enhancement, or other communication device
· Use written communication, such as email or fax
· Transfer to a position that does not require a lot of communication
· Allow periodic rest breaks"

At the bottom of the MS page, there's a link entitled: "Example Accommodations For People With Multiple Sclerosis". This link provides some actual situations.

OK: HERE'S THE LINK: http://www.jan.wvu.edu/

Stay tuned. Tomorrow we'll talk a little more about why and how you should/can put together a package yourself for your Human Resources department. And, as always, feel free to write comments, ask questions, seek clarification, etc. Particularly if you use this information, your questions can help others out there!

HEALTH PLAN Prescription "Prior Authorization" Compliance Example

Note: This blog is a real example of my own situation. I am continuing to use myself as a model of what I am bloging in the Disabilitykey Website. I passionately believe that we can only achieve the best quality of life for ourselves if we become an Expert Patient; a Chronic Disease Self-Manager; and participate with our Doctor in a "Patient-Centered" health care plan. BUT, I can't cajole, push, encourage y'all to accept these philosophies unless I first demonstrate that I too accept and follow them! So, here's a real life example describing the application of all of these philosophies!

"Prior Authorization required before this Plan will pay for this medication." How many of you have read this statement beside one of your medications when you check them out as your Company changes Health Insurance Plan coverage? Hopefully you did BEFORE you went to the Pharmacy expecting to get your medications, same as before, only to find out that you had to pay full amount for a needed medication (usually the most expensive one - ever wonder why this always happens?!?)

AND, if you, like me, are taking one of the "in the news" pain medications like Vioxx, Bextra (wait - we can't take these any more, even if we wanted to!!) or Celebrex, the Health Insurance Company REALLY DOES NOT want you to take these meds, as they don't want to be sued if there is a resulting problem.

So, you call the Plan, and they say that your Doctor has to fill out a document "justifying" your need for this medication, and obtain prior authorization before they will consent to pay for the medication. And by the way, we (the Health Insurance Plan) really don't think that anyone needs to take pain meds; they can just take OTC (Over The Counter) medications like the rest of the world. So, Doctor, do your best to justify for your patient, but...

Unfortunately for my Health Plan, I am VERY STUBBORN (gee - do you think that y'all might just have figured this out for yourselves by reading these blogs???). I know that the pain meds help me, I have been using them for over 4 years, and my Doctor prescribed them for me originally because I was taking 2X to 3X the "regularly approved" amount of OTC meds, and he was worried about the impact on my stomach and/or liver.

BUT, I have been taking the medication (in one form or another) for over 4 years, and I can't really remember (scratch that - I don't WANT to remember) what I felt like before I took pain meds!

OK self, I say, you claim to be an Expert Patient; to be a Chronic Disease Self-Manager; and you claim that you and your Doctor participate in the new "Patient Centered" Health Care (I promise to begin blogging about this tomorrow!) You know what you have to do!

Yes, I DO know what to do, and this is what, in fact, I did. Please, I ask all of you, keep your fingers crossed that it works! As I just completed the process today, I'll keep y'all informed on the outcome.

So, I needed to know exactly what the Paim meds did for me, and compile a document for my Doctor to assist him in documenting the Prior Authorization justification form. So....

1) I stopped taking the Pain medication the end of June! You see, as an Expert Patient and as a Chronic Disease Self-Manager, I am the only one who knows my body, my symptoms, and how the meds that my Doctor prescribes to my impact those symptoms. I can't ask my Doctor to write up something without my input. He is a fantastic Doctor, but he is not a mind-reader.

2) I spent the entire month of July off of the pain meds, trying to decrease the level of pain using OTC meds. You'll see the document that I wrote for my Doctor later on in this blog. I kept a daily diary about what was going on in my body.

As an aside, my family and some of my friends thought I was CRAZY! They watched the impact on me of being in constant pain, and thought that I should just pay the full price and take the meds! But, that would have defeated the point! Why have health plan insurance if it doesn't cover what it should? I can't let the Health Insurance company "win" on this; what about all those others out there in my same circumstances who can't afford to "just pay the money and get the meds"? AND, how can I "preach" to y'all to take chances and take responsibility for your body and your actions if I don't do the same first, and lead as an example?

3) At the end of the l-o-n-g month of painful July, I prepared a document of my situation and faxed it to my Doctor along with a request for him to prepare the Prior Authrization justification for me. I also called the Health Plan, gave them my Doctor's fax number, and asked them to fax a copy of the Prior Authorization justication form to my Doctor.

Now, there are some very key concepts demonstrated in what I just said above, and all relate to the concepts of control, self-reliance, and self-responsibility.

  • First of all, I took total responsibility for this process. I decided to stop taking the meds and to gather the documentation, because I needed to gather information. Now please I DO NOT RECOMMENDING THAT YOU STOP TAKING KEY MEDICATION THAT HAS BEEN PRESCRIBED BY YOUR DOCTOR THAT IS KEEPING YOU ALIVE. If you are unclear about what you need to do, you can always call your Doctor and run by him/her what you plan to do, and get his/her approval.
  • Secondly, I let a whole month go by so that I could gather as much information as I could.
  • Before i had anything sent to my Doctor, I called ahead and left a message for my Doctor through his Assistant to be on the look out for the incoming faxes.
  • Even though I had covered the who, what, why, when, over the phone to my Doctor's Assistant, I also documented that information into a cover memo attached to the justification documentation I sent to my Doctor.
  • Next, I was the one who called the Health Plan and had the document sent to my Doctor, as well as my documentation and cover memo. My Doctor's Assistant called me back to tell me that she had received both faxes.
  • I asked her to fax back to me what the doctor wrote on the form so that I can keep a copy in my files.

See, there is a process, and I, as the Expert Patient, kept control of it with my Doctor's help.

4) In the soon-to-be-blogged information about the Patient-Centered health care, the PCP (Primary Care Physician) Doctor treats the whole person, not just a symptom or two. And, s/he keeps in contact with any specialists that his/her patient sees, so that the PCP and the patient are like in the center of this web of contacts, treatments, and processes - TOGETHER. My Doctor and I have been working this way for over 10 years - long before I knew that it was really a process to be emulated! So, here's the document that I sent to him.

July 31, 2005
The following documents the pain that (I) suffer on a daily basis without a prescription of Vioxx, Bextra, or Celebrex. I have been on one of these three NSAIDS, Cox-2 inhibitor (selective) prescriptions for pain for over 4 years. As a result of a recent health insurance plan change, the plan requires that my Doctor justify my need for this prescription before its use can be approved, therefore, covered by the prescription coverage part of the health insurance.

When I called the health insurance company to ask about the justification, I was told that the Doctor needed to write out the justification on their appropriate form, justifying the need. The health insurance would review the justification, and determine if my need met their guidelines for coverage approval.

It is my understanding that the usage “justification” must demonstrate, to a medical necessity, that the need is greater than relief provided through use of OTC (over the counter) pain relief medications. Since my Doctor, needs to make this justification, I knew that I needed to supply him with evidentiary proof so that he could write the justification. Although (my Doctor) is the absolute best PCP (Primary Care Physician) possible, he is not a mind reader. Hence, he can only use what I provide to him.

Since I have been documenting my Multiple Sclerosis symptoms in the Attached Symptom Impairment Matrix while taking either Vioxx, Bextra or Celebrex, I knew that I had to get off of the pain medicine and actually take an OTC medication to be able to report on the impact that pain has on my Multiple Sclerosis symptoms to my Doctor. So, I ended my Celebrex medications on June 30th, 2005. I have now been relying solely on my other medications

[1] and the OTC pain medication of extra strength Non-aspirin Acetaminophen; caplets of 500 mg each. It took just 2 days without my daily Celebrex for the pain symptoms to begin to emerge. I have now had a month to document the results of my research into the impact pain without my prescription pain medication has on my Multiple Sclerosis symptoms. The following describes my symptoms and their impact on my body and my normal daily activities.

1) First of all, when I take the acetaminophen, I have to take 4 tablets, each time. This exceeds the recommended dosage, and, to even attempt to have any impact on my pain, I have to take 4 tablets every 4 hours, or a total of 24 tablets per each 24 hour period. This dosage level exceeds the recommended dosage level (the recommended dosage is not to exceed 8 tablets in a 24 hour period). I am concerned about the impact this level of dosage of acetaminophen is having on my stomach and liver. As of today, after 28+ days of this regime, I am experiencing daily stomachaches, cramps, and diarrhea.
2) As you can see in my attached Multiple Sclerosis Symptom Impairment Matrix, I deal with some level of pain on a daily basis, even while taking my prescription pain medication. However, I never realized just how well the prescription pain medication allowed me to better manage my other bodily functions until I went off of the prescription medication. Here are my ADDITIONAL PAIN IMPLICATIONS even taking the 4 acetaminophen tablets every 4 hours.
Ø My lower back aches all the time, with pain shooting down my legs. While on pain medication, this symptom occurred occasionally, NOT ALL THE TIME. My doctor says that this might be sciatica pain. This pain makes walking, climbing stairs, turning; all slow, jerky, and painful.
Ø My head, neck, shoulders, arms, hands, torso, back, hips, legs, knees, ankles, toes all ache, all of the time. The bones ache – deep; the muscles ache – throb; and, the muscles shake. This constant pain makes me clumsy, awkward, slow, and each movement hurts. As a result, I have fallen more often this past month then I have in the past 5 years! I have the bruises and scabs to document the falls. Even my son, with whom I live in a basement apartment, commented on my increased clumsiness.
Ø As a result of all of the pain, going to the bathroom is an event that is terribly painful. I have to move my arms and torso to carry out the activities, and each second hurts!
Ø I am more tired this past month than I have been in the past 4 years.
Ø Compensating for my constant pain increases my reaction to heat this past month.
Ø I have had tension headaches every day this past month; I had only about one or two per month on the prescription medicine.

Please approve my Doctor’s request for me to be able to once again take my prescription pain medication!
Thank you.

As you can see, there is lots of detail in the above document. I'll let y'all know what the result is.

Best of luck in your own documentation. Again, if you have questions or comments, please add to this blog, and we'll share with everyone!

[1] In addition to my pain medication prescription, I also take Gabapentin (300 mg capsules) 2 capsules by mouth 2X per day; Baclofen (20 mg tablets) one tablet 3X a day; and, Paroxetine (40mg tablets) one tablet 1X a day.

Monday, August 08, 2005

DISABILITY BLOG Review #1: Disability Law "Blawg"

One of the resources that I want to provide for you is a critique on other Disability Blogs out there. As I research them, the ones that I think will augment the information that I provide to you in this blog, will be first critiqued here, and then, a link to that blog will be provided also.

The Disabilitykey Blog's (this one that you are reading right now) primary functions are threefold:
1) To educate, by surfing the Internet and finding information that interests me, a disabled person, thereby doing the "research" for those who are becoming disabled; who are disabled; who provide care for those who are disabled.
2) To encourage, push, cajole, and use whatever means at my disposal (except for bribe, as I can't afford it) folks who are becoming and who are disabled to take primary responsibility for becoming an Expert Patient; for learning how to become proficient in Chronic Disease Self-Management; and, for insisting that your health care support team practice what is called "patient-centered" health care. (Blogs about this subject to be forthcoming, I promise!)
3) For learning as much about your condition and its symptom impairment impacts on your normal daily living activities that you become more empowered to accomplish whatever you set out to do (i.e., apply for and qualify for SSDI the first time around), thereby increasing the quality of your life. To assist readers to achieve a condition where they consider themselves a valuable "alternatelyAbled" person who just happens to have a chronic disease, but is NOT defined by that disease!

Now, it has taken me 38 blogs (yes, this is my 38th blog!) to figure out what this blog is all about (who said you had to have it all figured out ahead of time!). The blog is an adjunct to the www.disabilitykey.com website.

Now, some of you might just think that the purposes of this blog are VERY broad, and they are. AND, I am supremely confident that what I cannot think up to write about, you people reading these blogs will someday become unshy (is that really a word) and start asking questions for me to research!

HOWEVER, there are some subjects that, while I can tell you a little about them, I cannot do them justice. That's why I am soooo happy to be able to critique for you, and to recommend to you, other disability blogs.

The first one I want to critique for you is a "Disability Law Blog", called a "blawg" (I kid you not, those legal folks do have a sense of humor, and MUST get the word LAW into blog to turn it into blawg!) The Attorney's name is J. Kevin Morton.

Why do I like this blawg? For a number of reasons.
1) First of all, even though the author is located in NORTH CAROLINA, his information covers the whole US. For example, he just doesn't stick to commenting about the legal cases coming out of his court of appeals (I think that it would be the Fourth) he has all of them, even my dreaded Ninth. I say dreaded, as I just can't forget over 35 years as a practicing Human Resource Executive, and the opinions coming out of the Ninth Circuit Court of Appeals used to give me nightmares. Anyway, he addresses them all, so you can read about precedent-setting cases in your jurisdiction.
2) I just love his topics. For example, on the right side of his blog, he lists "Navigations". One of the subjects listed there is "Social Security Facts". So, you have read my website, and you are considering just what level of detail you must provide to Social Security, the first time around. Or, you have been denied SSDI the first time around, and you see from my blogs that I RECOMMEND an Attorney to be in your corner, but you want another opinion. Here's what he has to say:

" 15. Do I have to have a lawyer to represent me in my disability claim?
No. You can represent yourself, but statistics show that claimants who are represented are more likely to win their cases than those who are not. Social Security is the largest bureaucracy known to mankind so it helps to have someone representing you with the knowledge and experience to navigate the system.
There are also many non-attorney representatives who handle these cases. They cannot take your claim to federal court if the Social Security Administration wrongly denies your claim. If you were not represented by an attorney at the administrative level, you'll have to change horses midstream and hire an attorney if you want someone to represent you in federal court.

16. How are you paid?
In most cases, most attorneys charge a contingent fee which is the lesser of $5300 or 25% percent of your back benefits. A contingent fee means that if your claim is denied, no attorneys fees are owed.

17. What should I do if Social Security denies my claim?
Appeal!. Only 30-40% of all disability claims are approved initially. About 10-20% of reconsideration requests are approved. So your best chance of winning your case is when you request a hearing. More than half of claims heard by Administrative Law Judges are approved when claimants are represented by an attorney. (See
SSA's chart illustrating porgression of cases through the appeals process in FY 2002.)You should give serious thought to hiring an attorney to represent you at any stage of the appeal process." (I find this chart fascinating. When I first did my website, where I copy this chart, the approval rate was 40%; it appears to have dropped to 38%, indicating all the more the need for an attorney.)

3) If you are the type of person who wants to read an attorney's comments about a case, you can search the left side of this blog and check out decisions in your area. Here's an example of how Attorney Morton discusses an Eighth District case:

" July 29, 2004
Forte v. Barnhart, No. 03-2111, __ F.3d __ (8th Cir. July 29, 2004)
The Eighth Circuit, in an
opinion by Judge Theodore McMillian, affirms an ALJ decision in which appellant had argued that the ALJ (1) improperly discounted allegations of disabling pain, (2) failed to give appropriate weight to the treating physician's opinion (3) did not consider his obesity in assessing his residual functional capacity (RFC) and (4) failed to correctly frame a hypothetical question to the VE:
This court has stated that “‘[a]n arguable deficiency in opinion-writing technique is not a sufficient reason for setting aside an administrative finding where . . . the deficiency probably had no practical effect on the outcome of the case.’” Id. (quoting Benskin v. Bowen, 830 F.2d 878, 883 (8th Cir. 1987)).

Seems like the ALJ made enough of an effort to explain himself to pass muster, and the Court was unconvinced that had error occurred, it would have affected the outcome. For example, the ALJ "reviewed the progress notes and pointed out, among other things, that in June and August 1999, Dr. Ketcham had reported that Forte was walking six to eight miles a week, had denied that pain was radiating down his legs, and had not displayed chronic pain behavior." "

4) Attorney Morton explains, and provides links to, the Social Security Appeals process (something that I am not famaliar with, not having had to experience the process myself, thankfully). For example:

About a new aproach to the SSDI appeals process, Attorney Morton says:

" The devil is in the details, and this overview is limited to the COSS's summary explantation of the details as contained in the preamble to the regs. Actual proposed regs to be reviewed later. Here again is the flowchart for the new approach."

Now, you might wonder why I didn't just give you the link to this Disability Law Blawg early on in this blog. Well, I wanted to critique it for you, and to provide you examples of just why I liked it, and thought it might provide you with information that can help you. At any rate, this is the pattern I will continue to use when critiquing future blogs.


Sunday, August 07, 2005


Hope that all of you had an excellent week-end. I haven't had the opportunity to add to the blogs recently, as my Mother-in-law recently died, and her Memorial Service was conducted last Thursday. The Service was tastefully done, with both my son and daughter participating.

This event, coupled with the heat wave (in the 90's!!!) kept me hunkering down to conserve my energy. Those of you who HATE HEAT like I do, know the need to avoid being in the heat!

When I again checked my emails, I was delighted to find an update from the United Kingdon's website describing the recent results of their Expert Patient "Programme" (note the English spelling - they do spell differently "accross the Pond", although they probably accuse us as the ones who are different!!)

Here is the information:
The purpose of eUpdate is to inform people about new developments within the Expert Patients Programme such as new publications, forthcoming events and news from the national team.

The EPP is a NHS lay led self-management programme for people living with any long-term health condition(s). Groups of 8-16 participants, with a mix of different conditions, meet over six weekly sessions and are led through a structured course by trained tutors who are also living with a long-term condition. Each session (lasting two and a half hours) looks at ways to better manage the effects of their long-term condition. For more information about the EPP please visit the EPP website at www.expertpatients.nhs.uk

Internal evaluation data from approximately 1000 EPP participants who completed the course between Jan 2003 and Jan 2005 indicates that the programme is achieving its aims in:

1) Providing significant numbers of people with long term conditions with the confidence and skills to better manage their condition on a daily basis.
- 45% said they felt more confident that they would not let common symptoms (pain, tiredness, depression and breathlessness) interfere with their lives.
- 38% felt that such symptoms were less severe 4 - 6 months after completing the course.
- 33% felt better prepared for consultations with health professionals.

2) Providing significant reductions in service usage by people with long term conditions completing the EPP course.
- 7% reductions in GP consultations
- 10% reductions in Outpatient visits
- 16% reductions in A&E attendances (US note: note sure what this is.)
- 9% reductions in Physiotherapy use

Over 94% of those who took part felt supported and satisfied with the course.

These results look GREAT to me! If you want to sign up to receive periodic updated information about what the Brits are doing, you too can sign up to receive an "eUpdate" as they call them. It is FREE, and you can sign up by going to: www.expertpatients.nhs.uk.

This got me thinking about us in the US. Where can we find "Expert Patient" programs so that we can get the same results? Well, back to the Internet I went, and here's what I found.

1) First of all, on our side of "The Pond" we call the programs "Chronic Disease Self-Management" programs instead of "Expert Patient Programmes". Also, although the Brits offer their course via the Internet, to sign up, you have to live in England. Here in Oregon, we are probably as far from England geographically as we can get, so I guess that option is out for me!
2) The best site I could find where y'all could check out programs in your state was from the original Stanford site: http://patienteducation.stanford.edu/programs/cdsites.html If you go to this site, you can click onto your state and see which organizations in your state are licensed to offer the Chronic Disease Self-Management program.
3) And, if, like me, you find 12 sites in your state, you can begin to figure out one that might be appropriate for you. I decided to start with my home county, and looked up the info. I then called the appropriate person to get specifics. As it turns out in my state, they appearently are not yet offering courses for "regular folks" like me, more for State and County folks. BUT, they apparently had a recent course that was offered to representatives from local Chronic Disease Associations, and thought that they might be offering classes for us folks.

I haven't yet had the time to follow-up with the local Health Insurance Companies to see what they offer. When I do, I'll let you know what I find.

Again, if anyone wants to comment and/or ask questions, please feel free to do so, and they will be answered as soon as I can.

Tuesday, August 02, 2005

DISABILITY; Use of Disabilitykey Workbook to document impact of disability symptoms

In many previous blogs we have discussed the need to communicate the impact that your symptoms of your disability, condition, illness, etc. has on your normal daily living activities. We have talked about what is called the "Expert Patient"; of the need to become an informed patient to better work with your health care team.

In future blogs we will be talking about a new world-wide endeavor to change the medical services process from what used to be called "illness centered" or "doctor centered" medical care to "patient centered" care.

Interestingly enough, while I was researching this topic, my very own brother asked me a question that dovetails specifically with this topic. He is having problems with his feet. He has a compressed back disk that presses on a nerve; he also has what the doctors call "tarsal tunnel" syndrome (this is the exact same thing as "carpal tunnel" syndrome, except it is in your ankles and not your wrists). His problem is that his PCP (primary care physician) wasn't an expert on feet, and sent him to physical therapy; this worked for a while, but not long term, so he was then sent to a neurologist who knew nerves; he was also sent to a Surgeon who knew ligaments and bones and joints. The problem was, each "specialist" knew his/her own specialty, and recommended it as the "best fix"! NO ONE LOOKED AT MY BROTHER AS A "WHOLE" PERSON, giving him the pros and cons of all options so that he could make an informed decision. His doctors all appear to be practicing the "old" type of health care delivery.

I was able to provide my brother with some advice about the "patient-centered" type of medicine where he would get exactly what he was looking for, that I will be providing, in general terms, to all of you in future blogs. BUT, what I also told him is that he needed to compile information and become an "expert patient" if he expected to receive the maximum benefit of patient-centered medicine.

I referred my brother to my website: www.disabilitykey.com, and to my ebook, Disabilitykey Workbook. I suggested that getting and using the "Doctor Key" chapter of the Workbook would help him describe IN DETAIL his condition symptoms, the impact his symptoms have on him, how that impact effects his normal daily activities, and what, if anything, he can do to mitigate the impacts. The document in the Workbook is called the "Symptom Impairment Matrix"; there is a blank form for him to use to document his symptoms. AND, if he isn't sure what is meant in each column, I also have included a specific example - my own! Since I have had Multiple Sclerosis for over 45 years, I have many symptoms, and my example matrix is a great way to see how by documenting what is happening with you, you can better communicate to all those around you - especially your Doctor!

As I have said above, in future blogs I'll provide you with links to sites that might give you some ideas about options that you might want to discuss with your doctor (the links have the ability to look up different illnesses and conditions). I'll be giving you more information about the transition from doctor or illness centered medicine to patient centered medicine. Also, will be some questons you can ask your own doctor about whether he/she knows about, and is willing to participate with you in a patient-centered process.

So, if you, like my brother, need to begin documenting your symptoms, you do not need to start from scratch. If you have questions during the process, comment on this blog, or add another to this website.

Monday, August 01, 2005

Disability Assistance Devices/Aids

So, you have decided to accept that you need - no WANT - to live a quality life even with your disability, chronic condition. If you are stubborn like me, one of the hardest things for me to admit to myself, let alone to anyone else, is that I could no longer do the "normal" day-to-day activities like I used to do. Not being able to walk without falling was easy; it is "acceptable" to walk with a walker, or with canes. But what about bathing and other bathroom needs that are not so easily accomplished? Admit that you need help? Not me! Until, one night, I literally fell off of the toilet seat when I got what we with Multiple Sclorosis call the "MS Hug" (a charleyhorse in your torso).

So, OK. How do we find out what we need, where to get what we need, and who will pay for it? Here are some answers.

1) If you are keeping a list or a diary of your condition's symptoms and their impact on your daily activities, you should be ready to acknowledge areas where you need help. Some of them include, but are not limited to, the following:
  • bath and shower aids
  • dressing aids
  • food preperation and kitchen aids
  • non-skid "disks" for furniture and dishes
  • mobility aids
  • cup grips and hand grips and silverware grips
  • medical assistance aids
  • low vision assistance aids
  • hearing devices
  • etc.

These are but a few of the many categories of disability assistance devices/aids, as I am calling them. I found literally hundreds of websites that offer such aids for sale. You can probably find places that sell such aids in your local grocery stores; drug stores; larger stores like Wall Mart, etc. If you like using the Internet to compare prices, a website that I found that I really liked is this one: http://www.freedomlivingdevices.com/index.html

I guess that I liked the name of the company, and its philosophy of "freedom living devices". For, the bottomline is that that's what you are looking for with these devices.

2) So, you have done some research on your own, but really want some professional assistance. You can ask your Primary Care Doctor to refer you to what is called an "Occupational" or "vocational" Doctor. When I had problems walking, since I have what is called the MS "foot drop", and needed canes and a brace; and, when I found myself repeatedly choaking when drinking fluids and eating, my Doctor sent me to such a Doctor. She was fantastic! She sent me to visit various "occupational and vocational" therapists. They did their testing, and fitted me up with my walking canes; my leg brace; a motorized skooter; and, provided me with ways to avoid choaking while drinking and eating. (I always use a straw to drink liquids; and, I don't eat "little foods" like raw carrots, peas, corn, etc. alone, but "mush" them up with a solid, like potatoes, to form sort of a lump of food. May not sound great, but it keeps me from choaking!)

3) So, you have found things that might make your life easier (not that you have admitted to yourself and others that such "assistive devices" might be of help) and you have a referral to get personalized help. Now for the big question: who will pay for these assistive devices?

If you are lucky and have medical insurance, get ahold of what is called your medical insurance's SPD or Summary Plan Description. This document describes your insurance coverage. Look up something called "Durable Medical Equipment" (DME). Sometimes there is a limit per device; sometimes you pay a co-pay and insurance pays the rest. It is always good to know what they will pay.

AND, NOW IS A GOOD TIME to use the coverage to get the assistive devices. Most insurance plans have what is called an "annual deductible" that must be met before payment kicks in. That's why I usually recommend that folks meet this in the first few months of the year, and then, by July and August, go for the "big ticket items".

In my case, I got my leg brace, my forearm crutches (sometimes called "Canadian crutches") that I really love, and my motorized skooter and the insurance company picked up 80% of all the costs.

Now, it is very important to know this information ahead of time. Your occupational and vocational staff will work with your insurance company to fill out the paperwork the "correct way", but they need your help to get the paperwork correct.

Hope that this helps you in your journey of self-management. Once again, please ask questions if you want any additional information.

Friday, July 29, 2005

Disabililty; Trying to Get Health Insurance!!!

Don't you just love it when folks tell you that if you had only come to them BEFORE you became disabled; or BEFORE you were diagnosed with a chronic illness; or BEFORE you could no longer do your job???

This email serves 2 purposes: 1) to provide some information to those who were not lucky enough to ask the questions BEFORE; and, 2) for you to get this website information to people who are currently struggling BEFORE diagnosis; BEFORE no longer being able to do the job; BEFORE becoming totally disabled. I'D LOVE THE OPPORTUNITY to assist folks with help in getting all the help to which they might be entitled to BEFORE they need it! So, please, please pass along this website, and this blog. AND, ask questions yourself! It is free, and I love answering questions!

So, you were not able to secure additional Long Term Disability insurance before you became disabled; you were able to trigger COBRA, but it is half-way through, and you haven't started applying for SSDI; you have no health insurance, because you cannot afford COBRA, didn't know about HIPAA, and have no income. WHAT SHOULD YOU DO???

First of all, take a deep breath. Second of all, if some of the terms used in the preceding paragraph are unknown to you, check out the other blogs that define the terms. (I mean, other blogs in this blog set; I have many subject-matter blogs that can be accessed through the website: www.disabilitykey.com.)

The first thing you have to know is what question do you need answering first? What is the biggest problem that you need to address first.

  1. If it is prescription coverage, see the blog on that for further information.
  2. If it is Short or Long Term Disability insurance, see the blogs on those for further information.
  3. If you need Medicare, are on COBRA, and haven't yet filed for SSDI, read below.
  4. If you need Medicare, aren't working, can't afford health insurance, read below.
  5. If you are still working and need to know about working while disabled, stay tuned; I haven't yet written that blog yet.
  6. If you have never worked, and are not eligible for Social Security for whatever reason, you might find some assistance below also. If not, please write a comment about your situation, and we'll trigger the collective wisdom out there and see if we can get you some help.

OK, there are 2 primary sources of health insurance for folks who are fully disabled and not working: SSDI, and SSI. SSDI is "Social Security Disability Insurance"; SSI is "Supplemental Security Income". The qualifying terms for each are different. For SSDI, you must qualify by having paid into the Social Security System for at least 40 quarters (10 years); and, must have been found to meet their definition of "disabled". (See other blogs for this definition.) Eligibility for SSI is primarily financial.

Now, you might think that all 50 states would have the same "eligibility" criteria, but it does not appear to be as easy as that. For this reason, it is ALWAYS best to get state-specific information. In searching the Internet, I found the following website maintained by the Georgetown University Health Policy Institute. It is called: Consumer Guides by state for Getting and Keeping Health Insurance.

Here is the website: http://www.healthinsuranceinfo.net/

When I clicked onto my state, I found state-specific links, and a 43 page "Consumer Guide"! And, it appears to cover all sorts of information about health insurance, based on your situation.

So, here's what I would recommend. First of all, click on the above link; go to your state; check out the information. Email or call the references, and see what information you get. Please remember to write down your questions ahead of time, and be specific. Also, get the name and phone number of the person you talk to, and write down what they tell you as soon as you can after the call.

If you do not get the information that you need, then I would suggest asking an insurance broker about your situation. What you would be looking for would be what is called "catestrophic" coverage. This usually comes with high deductibles, and wouldn't cover routine things like office visits.

Many states, like mine, have what is called a "state health insurance pool". To be eligible for this pool, you need to have very little income, and probably qualify for SSI.

Hope that this resource helps! If you get stuck, write a comment, and let's see if we can be of greater help.

Wednesday, July 27, 2005

Disability, Chronic Illness, and Spirituality

When I was diagnosed with Multiple Sclerosis in the mid 1980's as a "diagnosis of exclusion" (see, my illness had been mis-diagnosed for about 25 years prior to this initial "diagnosis") I became VERY angry with God. "Why me", I asked. Why did I have to be the one you inflicted with this terrible disease? Why couldn't you let the Doctors conclusively diagnose the condition? Why did I have to keep pretending that the Doctors were mistaken, just so that I could live my day-to-day life?

I was asking the wrong question, you see. Instead of asking "Why me, God?", I should have been asking, "Why NOT me, God?" See, I was trying to become the "before the diagnosis" me, and I just could not do it. So, I went into denial, and pretended that nothing was wrong. And, as anyone who is disabled, or who is living with a chronic condition can tell you, living with a disability is hard enough without trying to become a pale image of who one might have been without the disability, i.e., trying to fit into a world designed by and for able-bodied individuals, most of whom are equally dispirited. It took me quite a while (about 10 years, actually) to come to the conclusion that I needed to stop being in denial; I needed to accept the condition, learn how to manage symptoms, and get on with a quality life. Indeed, I needed to ask, "Why not me God!" For living in denial meant that the ILLNESS DEFINED ME; I was very unhappy; I was seperated from my spirituality; I was alone; and, I contributed to disruptive events in my life.

It may sound corney, but I used my illness/disability experience as an opportunity to get in touch with the needs of my "true self". That is, I decided to use this opportunity to take back control over my life; to recommit to my spirituality; to discover and live a quality life; and, to keep replenishing my "well" of personal happiness and satisfaction by reaching out to others in similar situations. I mean, who better to discuss about living with a chronic illness than someone who does so on a daily basis, and not just some Researcher? Who better to create a Workbook (found at www.disabilitykey.com) to assist others obtain disability insurances to which they are entitled than someone who used the process herself, and not just a theoretical social services person? Who better to create a website and an online blog where we of similar condition can chat with, and learn about extending our quality of life than someone practicing each and every day?

Does my spirituality help me in these endeavors? You bet it does! Spirituality is a quality that goes beyond involvement in a religious organization. It is a more basic construct. The highest level of our development is affected by our ability to appreciate the sacred in life; to live each day with purpose, and to find a sense of meaning and purpose for our lives. Spirituality invites each of us with disabilities and/or dealing with a chronic condition to live fully and in the present - in REALITY, the here and now. Not in denial, but in control of our lives, learning about, managing, and living each day in quality!

Research suggests that people, and in particular persons with disability, depend on spirituality and religion as an important, if not primary, method of coping with physical health problems and life stress. Most research, however, has addressed one's involvement in religion rather than spirituality.

Although research about spirituality in the context of disability is sparse, many thoughtful writers have considered religion and spirituality to be crucial factors in adjustment to disability. BUT, we must be careful not to "blame" God, as I did, or to say that my disability is "God's Will, or punishment for something that I did". Saying these things isn't taking responsibility for our lives and figuring out how to live a better life by managing symptoms. Instead, become reconnected with whatever spiritual process/religion that you find speaks to you, and live in the present with all of the gifts that you still have. Being affiliated with a specific religion can sometimes help those of us with disabilities find comfort in times of isolation and despair.

While little research has been conducted on the influence of organized religion in the context of disability, studies on the general population have been positive. For example, a 28-year follow-up of thousands of people aged 18-65 years found that the individuals who attended at least weekly religious services had lower rates of depression, smoking, and alcohol use; they also tended to have greater social support. Frequent attendees were more likely to have engaged in other healthy behaviors, including physical exercise. The effect on survival was good after other factors were taken into consideration - their risk of death was reduced by 34%.

When disability is integrated as another dimension of living, spiritual growth can take place. Please reread this red phrase again. It talks about integrating a disability or a chronic condition "as anothe dimension of living"! It means, taking back control of your life; actually "living" again, and managing symptoms as part of every day life! AND, believe me, this is not easy! If you have the opportunity to acquire the Disabilitykey Workbook, you will see that I use my actual condition as an example for others to follow. Whenever I have to focus on my "Multiple Sclerosis Symptom Impairment Matrix", I get depressed all over again. My brother felt bad about asking me about his "condition" because he felt that it was NOTHING compared to what I cope with (more about his question in further blogs). BUT, I only concentrate on the symptom process when I need to. Otherwise, I concentrate on symptom management, and on daily living as quality a life as I can.

Integrating experiences of disability allows a person with a disability to recognize that suffering and hurtful experiences are universal conditions. It can be a time for you to discover untapped resources; it can be a time where you decide that you DO HAVE TIME TO play with your grandchildren, or read that book you have been putting off, or research your grandparents as they came to America long ago.

Spirituality is a way for people with disabilities to fulfill their potential and discover the possibilities while learning to live with and integrate their disability-related limitations and yet expand their boundaries to experience the fullness of life.

As part of my Internet research for this blog, I found the following website entitled "Faithability Religion, Spirituality and Disability Resources". You can subscribe to the site, for free, and receive (I think - I haven't gotten anything yet) periodic information. The site looked interesting, so here it is:


Once again, your comments, thoughts, and ideas on this and other blogs are welcomed!

Tuesday, July 26, 2005


One of the most difficult areas facing those of us with a disability, and/or those of us living with a chronic illness, is COMMUNICATION!! We have to communicate with others - family, medical care, friends, strangers, etc. AND, they have to be able to communicate with us. So, the better we can communicate with others, the better off we will be in soliciting, receiving, and giving help. AND, if you are like me, you were raised to GIVE help, not to get it! You were the caregiver; being on the receiving end is very hard to do.

This blog is seperated into two distinct areas. The first is a way to assist us better communicate what is going on with us, to others. The second part is information designed to literally "hand" to others, so that they know how to communicate with us as an actual "person" and not as a "disease".

To start off, I found this great website in Australia, designed to "link" folks together who have disabilities and disability needs. The acronym used is "TEAM". It means: Together, Everyone Achieves More! I love this concept, and thought you might also.

So, how in the world do you document all about YOU?? Well, if you are intending to use the information in obtaining your disability insurances, I recommend the Workbook that we offer at www.disabilitykey.com. The attachments in the Workbook allow you to document your symptoms, and have actual examples of forms and letters that you can use in your process, as well as the actual "How-To" process.

Additionally, I havae found this fantastic website, originating from the State of Washington. It shows you a model of communicating to all about "you". Unlike the disabilitykey Workbook, it does not provide you with the actual forms. However, if you are computer-savvy enough, you can duplicate the pages yourself. Included are the following sections:
  • Care Teams
  • About Me
  • Diagnoses
  • Next Steps
  • Health Log
  • Medications
  • Reactions
  • History
  • Advanced Directives

I'd add one more section, personally, about family, friends, relatives, etc.

Here's the link: https://www.sharedcareplan.org/Home/Guest.asp

You now know how important it is to document all the information about YOU. Now you can share it with others. Once documented, all you have to do is update the information, as it changes. In this way, you do not have to rely on memory.


Again, the following information has been gleaned from a variety of sources.

The way a person refers to persons with disabilities shapes his/her beliefs and ideas about that person. Using appropriate terms can foster positive attitudes about persons with disabilities. One of the major improvements in communicating with and about people with disabilities is "people-first" language. People-first language emphasizes the person, not the disability. By placing the person first, the disability is no longer the primary, defining characteristic of an individual but one of several aspects of the whole person.

For example, it is preferred to say, "people with disabilities" instead of "the disabled"; or "Mary has a vision impairment" , or, "Mary is vision-impaired" instead of labeling the person by saying, "Mary is blind."

An exception to this rule is for people who are deaf or hard of hearing. In general, the deaf community does not like to be referred to as having hearing impairments. It prefers deaf or hard of hearing. Use "hard of hearing" to refer to people who have hearing loss but communicate in spoken language. "People with hearing loss" is also considered acceptable. Many people who are deaf and communicate with sign language consider themselves to be members of a cultural and linguistic minority. They refer to themselves as Deaf with a capital "D" and may be offended by the term "hearing impaired." Many Deaf do not believe the condition to be an impairment.

If someone has diabetes, they are a person first, with diabetes. Please do not refer to them as "the Diabetic", unless this is how they wish to be refered to (and you know this because you have asked them ahead of time). I, for example, am a vibrant, wordy person who loves to read and work with people, who happens to have Multiple Sclerosis. It is a condition that I have; it does not define me.

If you don’t know the appropriate words to use, simply ask the person what is preferred.

Lastly, let's talk about "relationships" in general. If you are dealing with a disability, and/or with managing a chronic illness, it is CRITICAL that you NOT cut yourself off from others. Life is very precious, and, as we discussed in the quality of life blog, living well is and should be, the goal of us all.

If you have any additional questions about communications or disability relationships, please comment and we'll tap into our collective wisdom!

Tuesday, July 19, 2005

Health Insurance; COBRA; OBRA; HIPAA; Medicare; Definitions, Relationships

Health Insurance; COBRA; OBRA; HIPAA; Medicare. If asked, could you state that you knew that all 5 of these topics had the same thing in common: medical insurance coverage for you and, perhaps, your family? Would you know the qualifications for each? Well, in this blog, we will discuss them. For a timeline that depicts, graphically, the time relationship between them, please see the timeline in www.disabilitykey.com.

HEALTH INSURANCE Coverage from Work

If we are lucky, we, and/or our spouse, work for a company that provides, as a benefit, health insurance coverage for us and our family. If so, we are very lucky. Even if that is true, there are some key things that you might want to look at to see if you have ENOUGH coverage.
1) From your Human Resources Department (or wherever else you would go to get information about your health insurance) get what is called a "Summary Plan Description" (SPD). This document should be kept where you can always find it, as it contains all the information you will need about what your insurance covers and what it doesn't.
2) Look up "Coverage" and "non-coverage" in your SPD.
These will tell you what your plan covers and doesn't cover. You need to see if, perhaps, you or one of the covered members of your family has a condition or circumstance that might not be covered, where you need additional coverage. For example, let's say that your family has a history of cancer; perhaps your plan restricts the number of hospitalization days for care; or, restricts the days per condition. In this case, (like my children) you might want to get additional "cancer insurance" (I think that AFLAC might provide this type of coverage).

It would be a good idea to contact a Health Insurance benefit Broker and ask him/her to read your SPD and see if you have any gaps in coverage. They then can help you supplement coverage BEFORE YOU NEED IT!


You might be one of the growing members of our society that, through one circumstance or another, does NOT have health insurance coverage for your family. In this case, I strongly encourage you to contact a Health Insurance Broker and get immediate coverage of what is called "catestrophic" (not sure if I spelled this correctly) coverage. In this type of coverage, you will generally have large deductibles, but will have coverage if, say, one of you has to go into the hospital.


Whenever you call or email a Health Insurance Broker, it is very important to prepare ahead of time. WHAT, specifically are you looking for; how much can you afford to pay every month; what circumstances do you want to make sure that your family is covered for. In this way, you can make sure to focus on your critical needs.


COBRA is an acronym ( how can I spell acronym correctly, yet not be sure that I spelled catestrophic correctly?) that stands for: Consolidated Omnibus Budget Reconciliation Act. Basically, it is a federal law that allows you to pay for your Company-paid health insurance, as an active member, if you no longer work for that company for, generally 18 additional months.
1) COBRA is "triggered" (that is, you, or a covered member of your family, become eligible for COBRA) by events such as the following: resignation from the company; termination (FOR ANY REASON) from the company; divorce of a spouse; a covered chile's birthday makes them ineligible for coverage. These are the main "triggering" events for COBRA.
2) Now, when eligible for COBRA, you will be asked to pay for 100% to 105% of the company's employee/employee and family coverage amount. You should get a letter from your company explaining what that amount will be. BEFORE YOU DECIDE TO TAKE COBRA, there are some important things for you to consider.
  • What will be your cost, and what will be the coverage for that cost? Sometimes the cost is too much for the coverage. In these cases, you might want to select HIPAA coverage, instead (see HIPAA below).
  • Or, you might just want to get catestrophic coverage as was mentioned earlier, and wait for full coverage under your next job.
  • Part of this decision should be whether or not you or a member of your family has what is called a "pre-exisitng coverage" condition.

Here again, before automatically taking COBRA, it would be wise to contact a Benefits Insurance Broker and give him/her all of your options, and get their input. I have worked extensively with a Benefits Insurance Broker, and he is absolutely fantastic!


What, you ask, is OBRA? I've never heard of it, you say, and no one I know has heard of it either! Well, that's because, 99% of Human Resource or Benefit folks that I know have never heard of it! OBRA is a federal law that was passed that extends COBRA for an additional 11 months FOR DISABILITY PURPOSES ONLY!! Why, you ask, is this important? Thanks for asking, let's see if I can explain.

  • If you are as nieve (did I spell this wrong too? sorry!) as I was when I first started looking to bridge my health insurance from working to Medicare, I assumed that when I got through all of the hoops to qualify for SSDI (Social Security Disabililty Insurance) I'd IMMEDIATELY be eligible for Medicare, RIGHT??? WRONG!!!!
  • When you FINALLY qualify for SSDI, you have to wait for 5 months before you get your first check. AND, the rules state that, you are eligible for Medicare 2 years (24 months) FROM THE DATE OF YOUR FIRST SSDI PAYMENT. Well, if you add 24 + 5 you get, 29 months between qualifying for SSDI, and Medicare coverage.
  • OK, I said earlier that COBRA is for 18 months of coverage. Well guess what 18 months of COBRA + 11 months of OBRA equal - 29 months!
  • BUT, there are two catches to OBRA; first of all, you have a small window of 30 - 60 days to apply ( this window opens the date of your SSDI approval); and, it can cost up to 150% of your plan coverage amount. BUT, if you have a "previously existing condition" this might be the best way for you to proceed.

Again, it is important to contact a Health Insurance Broker to help you with the risk/cost ratio of all of these situations.

It is also improtant to know all of these deadlines as you plan to ensure that you and your family have important health insurance coverage.


HIPAA is a federal law that is called, briefly, the "portability" law for health insurance. What that means is that when you leave a group (read company-paid plan), the carrier that provided that plan, must offer to you, another plan, different from COBRA, when you leave the group coverage. Generally this will be what is called a "bare bones" plan. Again, the best thing for you to do is to call/email a Health Insurance/Benefits Broker with all of your information: SPD, COBRA info, HIPAA info, needs, cost limits, and let him/her help you find the optimum plan coverage for you.


OK, now, finally, we've reached Medicare! BUT (you really didn't think it would be that easy, did you?) if you have qualified for Medicare because of disability, there are RESTRICTIONS (of COURSE there are!).

  • First of all, if you are qualifying for Medicare because of disability, you are probably under the age of 65 - normal retirement age.
  • Medicare coverage does NOT cover prescription drugs, which, those of us with disabilities probably need, and which cost lots.
  • But, Congress prescribed that states (all but 11) offer what is called "Medicare supplement" plans, some of which do offer prescription coverages.
  • BUT, these plans ARE NOT REQUIRED TO, and do not, offer these medicare supplement plans that offer prescription coverages to folks who qualify under age 65! So, if you are qualifying because of disability, your medical insurance plan doesn't cover one of your primary cost expenditures!

Here again is where you need to contact a health insurance/benefit broker. Again, he/she can work with you, and your specific circumstances, to get you the coverage you need.

Hope that this information was helpful to you. If you have any questions, please feel to ask them by commenting on this blog, and I'll be happy to get you an answer.

Monday, July 18, 2005

Chronic Disease and Disability References/Websites

Chronic Disease and Disability References/Websites

In searching the Internet for information to bring to you about chronic diseases and illnesses, and about links to informative websites, I have been absolutely astounded at what is available! Now, as you have probably realized, I have the time, and love to “surf the net” as my kids say. Perhaps you, or someone you know, needs the information, and may not be quite as handy in searching. So, here are some of the best that I have found. I have concentrated on the websites that will allow you to search for disability/illness organizations or agencies in your home state.

1) Welcome to NICHCY and a wealth of information on disabilities! NICHCY stands for the National Dissemination Center for Children with Disabilities. While this site started out disseminating information about children with disabilities, it references, within each state, information critical also for adults. This link takes you directly to the site where you can click on your state, and access disability and chronic disease organizations and associations in your state, as well as a wealth of other information. (Note: scroll down to the bottom half or the page.)

2) The second website is called HealingWell.com. It is a website: “On Diseases, Disorders, and Chronic Illnesses”. This link is to the website’s Home Page. If you focus on the left side of this link, you will see a column entitled “Diseases and Conditions”. Select yours, and your link will appear. Scroll down the page, and on the left-hand side you will find “Links to Chronic Illness Resources”. Click on the right-hand column and you can become a member of this website and join into different chat rooms.

3) This next website is entitled “The Disability Resources Monthly (DRM) Guide To Disability Resources on the Internet”. This is a source chock full of information. The link below is to the “State” page. To find disability organizations or agencies in your area, click on your home state.


If you would like to have me locate some specific resource, please let me know!

Sunday, July 17, 2005

DISABILITY LAWYER: Selecting and Working with the RIGHT one for you

DISABILITY LAWYER: Selecting and Working With the RIGHT one for You

Research shows that people spend WAY more time selecting a car then they do an attorney – of any type! However, if you are looking for, and need, the services of a Disability Lawyer, it is STRONGLY recommended that you spend time preparing a search for, actually selecting, and actively working with the “right” one for you. Here are some suggestions for you in this process.


First of all, a lawyer’s presence gives you significant clout, or what is known as “gravitas” (i.e., credibility and wealth of expertise and experience) with Insurance Companies and the Social Security Administration (particularly in the appeals processes).

Secondly, disability lawyers are aware of any loopholes that may exist, and can help you focus your energies and activities toward a successful outcome, particularly if you are in an appeals process.

Finally, and most importantly, if you have already been denied benefits, you REALLY need that disability lawyer to assist you in the appeals processes.


In future blogs, we will be providing direct links for you to use in locating a “disease-specific” Association or Organization in your state/location. These places are full of information, usually for free. And, they usually have a list of disability lawyers that their members have recommended.

Go online to a website that you have confidence in to search for law firms in your area. Visit their websites to check out their practice specialties, articles, clients, results, and personality. Particularly look to see if their website summarizes any cases in their areas of specialty.

Other “professional” friends or acquaintances of yours (Real Estate Agent; another type of lawyer; Church Pastor; Banker, etc.) might be able to recommend someone.


Selecting a disability lawyer should be like selecting a doctor; you really have to be comfortable with the one you select; their personality, their style, their way of communicating, etc.

You want a lawyer with at least five to seven (5 – 7) years of experience (and at least 3 of those must be in your particular state).
You want a lawyer who specializes in the area you need (i.e., Social Security law, or Disability Insurances – Long Term Disability Insurance), and whose practice is 70% to 75% or more in this specific area.

You want a lawyer who believes in communicating well with their client. You want him/her to be upfront and honest about your chances of winning.


Remember, you will want to select about 2 or 3 lawyers to interview, so that you have the ability to compare styles, personalities, and “fit” for you. Also, sometimes it helps to take along someone else that you trust, so that they can write down what is said.

Many disability lawyers will not charge for the initial free no-obligation initial consultation. BUT, IT IS YOUR RESPONSIBILITY TO COME PREPARED SO THAT YOU DO NOT WASTE THEIR TIME.

Take paper and pen to document your discussion. Write down your questions ahead of time, so that you will not forget them.
1) Explain your situation BRIEFLY. Start with what you want as an outcome from your association with the attorney.
2) Ask what his charges will be. See if he/she will not charge a fee unless they win or settle your case.
3) Ask how they will approach your problem.
4) Ask what you can do to improve your chances of success.
5) Ask what you can expect to happen over the next few weeks, months, at conclusion of the case.

6) Ask if they have any questions for you - about your case or anything else.


You should expect your chosen disability lawyer, the right one for you, to be someone who is:

Honest about your situation, your chances, and each step in the process;
Timely in scheduling meetings, turning in documents, in letting you know who, what, and where you need to do, go, and see;
Available (either him/herself or someone on his/her staff) at critical junctions in your case; and,
Realistic about the process, your case, and each step in the journey.

In exchange for his/her expertise in your case, your disability attorney should be able to expect the following from you. That you will be:
Honest with him/her at all times;
Timely in providing documents to him/her, in attending meetings, etc.;
Prepared and available for each meeting, and respectful of his/her time; and,
Realistic about your chances in the process.

Best of luck in your successful selection and work with the RIGHT disability attorney for
you! If you have any additional suggestions for folks looking for a disability lawyer, we'd love to hear them. Also, we'd love to have stories about your experiences with disability lawyers!

Thursday, July 14, 2005

QUALITY of Life; Journey from Diagnosis to Living Well

Greetings!! We have devoted many blogs to issues dealing with chronic care management. In future blogs we will be discussing something called "Patient-Centered Care". This is a new health care treatment concept that is as far from the traditional "Disease or Doctor Centered Care" process as day is from night. Yet, strangely enough, the concept is as old ad time. I'm almost finished with the research, and should be able to start these blogs tomorrow.

But before we get to the serious information again, I want to take the time to talk about a subject close to the heart of all of us who deal daily with management of a chronic disease - Quality of Life.

When I was at my "Active" peak, I would pray for "long life, wisdom", etc. When I was first diagnosed with Multiple Sclerosis, in the mid 1980's as a "diagnosis of exclusion" (in normal people speak, this just means that they really don't know what's wrong with you!) I went into a decade long state of denial. At the end of this blog, I'll copy for you what I call my 5 Chapters of Transition. I wrote this, I believe, in 1999, as I finally accepted the medically-objective (i.e., the results of an MRI and a Spinal Tap) that I had Multiple Sclerosis "for real", and not just a "diagnosis of exclusion".

Now, we who daily manage a chronic disease, wish for health, and not necessarily a "long life". For, without your health, one reasons, what good is the "long life"? Herein lies the concept of Quality of Life.

As we saw in the Laughter as Medicine blog, a positive attitude; a deep belly laugh really does help one's health. Research also shows CONCLUSIVELY that a positive attitude is very helpful in contributing to the quality of one's life.

So, I ask you, how is the quality of your life? Even those with perfect health often do not have a positive qualify of life. Can you even define what quality in your life looks like? When I consulted with companies (and those of you interested with the Management Consulting company that I started with two of my Partners that were former part-Owners of the Ship Repair Yard, can visit the website: www.cubemangement.com) I used to ask the client one of Dr. Steven Covey's 7 Habits that was and still is my favorite: Start With The End In Mind. What do you want to achieve? What does it look like when the project is finished? If they were hiring someone for a position, I'd ask, "What does it look like when the incumbent of this job is successful?" If I was assisting someone transition from one job to another, I'd ask, "What does it look like when you are energized at work; what are you doing; what time of day are you working; who are you interacting with, or what are you interacting with; etc."

Why did I concentrate on the end result? Well, If you can't describe what it is you are looking for, or where you are going, how do you ever expect to get there?

So, you are a person; perhaps you too are dealing with a chronic illness; or, you are supporting someone who is dealing with a chronic illness; or, you happened onto this blog by accident, and you want some more information about increasing the quality of your life. Wherever you started, WELCOME!!!

Your first challenge is to take a sheet of paper and write down at least 5 things that you REALLY love doing; that, if you could waive a magic wand, you would spend all of your time doing. I'll start with my 5 things:
  1. Playing with my Grandaughter (this could be 1,2,3,4 and 5 let me tell you!)
  2. Reading
  3. Working on this blog.
  4. Doing Internet research for the blog.
  5. Helping people help themselves in whatever way I can.
  6. Keeping up to date with friends and family.

OK, I had to do 6 instead of 5. But, it took me all of 1 minute to get these down. They constitute my passions; my joys; my QUALITY OF LIFE!

Now, reading my key passions, could you tell that I daily manage the myriad symptoms of the chronic disease Multiple Sclerosis? (And if you want to see what the symptoms are, they are all depicted in the Worksheets in the Disabilitykey Workbook at the www.disabilitykey.com website.) No, because the disease does NOT define me; my passions do!

Before I had my grandaughter to play with, Reading was my #1 passion, by far. I love to match wits with the "bad guys" in mysteries; go to far away places in adventure books; page-turn in suspense yarns, etc. I am in my mid-50's, and have read, literally (no pun intended) thousands of books. Until recently, one of my favorite books was the book The Eight, by Katherine Neville. It is still high on my list of favorites, but has been surpassed by the 4 book series of ABSOLUTELY FANTASTIC books by an author named Eliot Pattison. The 4 books are:

  1. The Skull Mantra
  2. Water Touching Stone
  3. Bone Mountain
  4. Beautiful Ghosts

While each book can stand alone, I find it best to read the books in sequence. The books are intricate suspenseful mysteries, coupled with the most fantastic life wisdoms I have ever, ever read. They take place in Tibet. This is what the San Francisco Chronicle says about the second book, Water Touching Stone: "A rich multilayered story that mirrors the complexity of the surrounding land, where few things are as they seem....Pattison takes readers to a quietly troubled part of the world and peels away at the centuries of culture that have come into conflict."

Here is a passage, a "sliver of wisdom" in a powerhouse "Redwood tree" of wisdom packed into each book.

From pages 134 and 135 on the 3rd book, Bone Mountain, Pattison writes: "Sometimes, Shan's (the main protagonist in each book; like an "everyman/everywoman") father told him, people can live eighty or ninety years and only briefly, once or twice at most, glimpse the true things of life, the things that are the essence of the planet and of mankind. Sometimes peolpe died without ever seeing a single true thing."

Have you ever seen a "true thing"? I'll tell you that the pure, unconditional love of a child is a "true thing", for sure. Would you know one if you saw, heard it? Concentrating on things that you are passionate about, that enrich your life - that defines Quality of Life. Without Quality, it doesn't matter if you have a chronic illness or not - if you are perfectly healthy - the richness of your existence is missing.

AND, it is FREE! None of the things I mentioned cost $ (I guess you could say I couldn't do some without a computer, but Libraries have computers)! I get all of my books from my local Library!

So, find your passions; grab ahold of your "true things" in life with both hands, and develop your own quality of life. You will find that this becomes your best medicine; your best way of managing your chronic illness.

Again, as always, comments, additions, and questions are welcomed.

Here is my "5 Chapters" (taken from my website, www.disabilitykey.com.

A Journey of Acceptance:Reacting to Non-Visible Multiple Sclerosis in 5 Short Chapters
Chapter 1: Identification
About 35 years ago, a high school student kept having her fingers go numb. Going to the doctor, she was told “you have poor circulation. Just move your fingers more.” A decade later, a new mother started to have visual black-outs and holes in her vision. An optometrist told her “You are having migraines; just be happy you don’t have the headache also.” A decade later, her feet and left side went numb, and a Dr. said “You may have multiple sclerosis (MS)." It was a diagnosis of exclusion because they couldn't find anything else. Three years later, the right side of her face went numb. A doctor declared that it was “just nerves – your father just died.” Finally, in 1998, a new optometrist told her that her that her double vision, dizziness and vision holes were classic symptoms of MS. With a new neurologist, the diagnosis was confirmed. After 35 years of thinking that she was crazy, she finally had answers.
Chapter 2: Denial
Between 1986 and 1997, various life crises forced her into a major game of denial. There was no time for dealing with debilitating illness while facing the end of a 23 year marriage; helping two teenagers grow into wonderful adults; the death of a grandmother, her father-in-law and both parents; two job changes and now having the occupation of a lifetime – helping people be the best they can be. She was a strong woman who could handle it! Right? To do less is to be lazy.
Chapter 3: Acceptance
At one point toward the end in that long denial period, it was a very rainy year in Oregon (not redundant!). When the roof began leaking on her head at both home and office on the same day, she broke down and decided enough was enough! For the first time in her life she considered ending it all, suffering serious doubt in her ability to manage what her life had become. Seeking depression counseling from a caring doctor was the first step in acceptance. Going back to a neurological specialist after 11 years of denial was the second step. Enduring exhaustive batteries of tests and establishing the diagnosis prompted her to learn as much about MS as she could – step three. Then came all of the literal as well as figurative steps in adjusting to her new life: weekly Avonex shots, accepting the fatigue, incontinence, numbness, dizziness, using a cane for balance, etc.
Chapter 4: Making the System Work for Her
She loved her job as Vice President of Human Resources for a large industrial company. One day she found herself in the following situation: her CEO was on the phone, a Sr. VP was on her cell phone, a manager and his Union Business Agent were talking to her in her office; the Safety Officer and an angry employee were in the hall, both talking to her. Suddenly she couldn’t remember who or where was! The time had come to realize that she was in control of the disease; it wasn’t in control of her! With a thorough understanding of her company’s disability plans, she now needed to put that understanding – and the system – to work for her. She knew that the available benefits would give her the much-needed time to fight this new monster, as well as take care of practical matters like hiring a replacement and paying more bills on less salary. Most importantly, qualifying for short-term and long-term disability would help maintain her quality of life so that she could still contribute to lives of those she loved.
Chapter 5: Helping Others Fight the Monster
With the fantastic support of her company, her family, and her friends, she set her plans into action. In October 2001, she took peer counseling training from her local MS organization and, after dropping back to part-time employment, she became dedicated to helping others help themselves.

Monday, July 11, 2005

LAUGHTER as Medicine!!!

Greetings! We added a new member to our household a week ago - a 10 week old puppy! A BIG puppy, a Golden Retriever. Well, Riley, as he has been named, is very loving, but is hated, unconditionally, by our 3 cats! The cats decided to protest against this intruder in any way they could. So, one brought home a present for the Humans - a live mouse. Watching my son and daughter-in-law crawling on the floor, trying to rescue this 2 inch mouse, tickled my funny bone! As I laughed (and yes, the mouse was caught and released, unharmed but probably very happy to be away from the cat and the big entities) I remembered just how important laughter is to us. So, I did some research about "laughter as medicine". From a variety of great sources, I bring the following to you.

1) First of all, since we have been talking a lot about communication, here is a joke called the "Polish Divorce" that I hope that you will like.


A Polish man moved to the USA and married an American girl. Although his English was far from perfect, they got along very well until one day he rushed into a lawyer's office and asked him if he could arrange a divorce for him - "very quick."
The lawyer said that the speed for getting a divorce would depend onthe circumstances, and asked him the following questions:
  • LAWYER: "Have you any grounds?"
  • POLE: "JA, JA, acre and half and nice little home."
  • LAWYER: "No," I mean what is the foundation of this case?"
  • POLE: "It made of concrete."
  • LAWYER: "Does either of you have a real grudge?"
  • POLE: "No, we have carport, and not need one."!
  • LAWYER: "I mean, What are your relations like?"
  • POLE: "All my relations still in Poland."
  • LAWYER: "Is there any infidelity in your marriage?"
  • POLE: "Ja, we have hi-fidelity stereo set and good DVD player."
  • LAWYER: Does your wife beat you up?"
  • POLE: "No, I always up before her."
  • LAWYER: "Is your wife a nagger?"
  • POLE: "No, she white."
  • LAWYER: "WHY do you want this divorce?"
  • POLE: "She going to kill me."
  • LAWYER: "What makes you think that?"
  • POLE: "I got proof."
  • LAWYER: "What kind of proof?"
  • POLE: "She going to poison me. She buy a bottle at drugstore and put on shelf in bathroom. I can read, and it say, 'Polish Remover'."

I love this joke for it really demonstrates how fragile we humans are when we try to communicate!

OK, are there any statistics linking laughter with health? Many of the sites I visited used the following quotation from Voltaire.

VOLTAIRE said “The Art Of Medicine Consists Of Amusing The Patient While Nature Cures The Disease.”

Well, as we who manage a chronic disease daily know, the symptoms are hard to define and communicate; normal daily living is difficult; what is there to be humorous about?

That's were we get to the concept of choice. As you will see below, the benefits of laughter are there; so, why not find something to laugh about each day, and reward yourself? It is free, and fun!

Humor even has long-term effects that strengthen the effectiveness of the immune system. In healthcare, humor therapy can help relieve stress associated with disease and illness.

Many sites used the following "statistics" about laughter and its effect on the body's health (I'd love to see who researched the child's laughing).

  1. Children laugh 400 times a day while adults laugh only 15 times.
  2. Endorphins, the body's natural pain killers, are released during deep heartfelt laughter.
  3. IgA (an antibody), killer T-cells, and tolerance to pain are increased with laughter while serum cortisol (a hormone secreted when one is under stress) is decreased with laughter.

Even the bard Shakespeare believed in the healing qualities of laughter and wrote in The Taming of the Shrew, "And frame your mind to mirth and merriment, which bars a thousand harms and lengthens life."

There are a number of components of laughter that have been proposed as means by which health is improved.

  • Vigorous laughter is stimulating. It increases heart rate, blood pressure, and circulation.
  • This benefits the immune system, brings oxygen to the blood, increases alertness, and exercises the skeletal muscles.
  • Following laughter there is a brief period during which blood pressure drops and heart rate, respiratory rate, and muscle activity decrease, resulting in relaxation--a welcome respite in our busy and sometimes stressful lives.

So, laugh, laugh, laugh. I'm sure that you can find ways to bring laughter into your daily life. In future blogs we will discuss ways to add some humor. And, if you know of any great ideas about humor, please share them with us.

Wednesday, July 06, 2005

DEPRESSION in Teenagers and Children

A while ago I did a blog about Adult depression. While doing the research on Adult depression, I learned quite a bit of information about depression in general, in addition to what I already knew because I suffer from this condition myself. What I didn't know, however, is just how prevelant this condition is in the population at large, and in children and teens in specific. One source said that depression is close to the top psychological condition in the western world (more about what this means in a later blog; it'll take a whold blog to talk about what this means).

This blog will cover the following: teenager and children depression statistics; teenager and children - specific depression symptoms (for "general" symptoms, check out the Adult blog), and, what you, as the parent and/or gaurdian, can do if you recognize the symptoms in one of yours. (Remember, the following information comes from many Internet sources.)


  • As many as 8.3% of teenagers in the U.S. suffer from depression.
  • Suicide is the third leading cause of death in teenagers.
  • As many as one in every 33 children and approximately one in 8 adolescents may have depression. (Center for Mental Health Services, 1996; these data have increased over the past 9 years).
  • Treatment of major depression is as effective for children as it is for adults. (Dr. Graham Emslie, American Medical Association, Archives of General Psychiatry, November 15, 1997).
  • Twenty years ago depression in children was almost unknown. Now the fastest rate of increase in depression is among young people. (I don't know about you, but this statistic scares me the most!)

The statistics on teen depression are sobering. Studies indicate that one in five (1 in 5) children have some sort of mental, behavioral, or emotional problem, and that one in ten (1 in 10) may have a serious emotional problem.

What is even more chilling is that of all these children and teens struggling with emotional and behavioral problems, a mere 30% receive any sort of intervention or treatment. The other 70% simply struggle through the pain of mental illness or emotional turmoil, doing their best to make it to adulthood. Many theorize that this is why the suicide rate in teens is so high. Suicide is the third (3rd) leading cause of death among young people ages 15 to 24. Even more troubling, it is the sixth (6th) leading cause of death among children ages 5-14.

The consequences of untreated depression can be:

  • increased incidence of depression in adulthood;
  • involvement in the criminal justice system;
  • or in some cases, suicide.


As we see above, treatment (i.e., counseling, therapy, or even medical intervention, if needed) for depression is as effective for teens/children as it is for Adults. Let me state that again; research from a variety of sources indicates that appropriate treatment for depression in a teen and/or a child is as effective as it is for Adults. So, what, as a parent or gurdian, should we look for? What are the symptoms of real depression, and not just a "bad mood"?

"Real Depression" - the type that needs immediate and appropriate attention - in teenagers and in children is defined as: when the feelings of depression persist and interfere with the teen's/child's ability to function in his/her normal daily activities. This doesn't mean that one should ignore a teen's/child's bad mood if it lasts for a few days or a few weeks. What it does mean is that, at a minimum, you, the parent/guardian must know enough about your teen's/child's normal daily activities so that you can know when there are changes. OK, what covers "normal daily activities" for a teen/child? (And, in this, we are sticking to American generic teens/children, because that's what I am most famaliar with. If anyone can add to this list, please do so.)

As you read through this list, remember that your teen/child has to have "a siginficant" number of these symptoms; they have to be ongoing, out of character; and impair the teen's/child's normal daily activities (sound familiar?)

1) Snapping at people for no apparent reason - being irritable at everyone.
2) Physically or verbally aggressive at everyone.
3) Abandoning favorite hobbies or sports or other routine, daily activities.
4) Increased passive TV watching (where the teen/child has that "thousand yard stare" and is not interacting with the programs).
5) Increased risk-taking; e.g., dangerous driving; climbing too high in a tree and jumping, breaking something; other repeated unusually dangerous activities.
6) Misuse of drugs and alcohol. Particularly teens, who use drugs and alcohol to "escape". (1)
7) Changes in school behaviors (including training courses and work settings) for teens; changes in interpersonal behaviors and activities in a pre-school setting (i.e., used to like to color and play with clay; now just sits in a corner, holding a stuffed toy and sucking a thumb).
8) Frequent absences from school; poorer grades than formerly attained; increase in skipping classes; etc. For a child, reversion in activities (i.e., used to color within the lines, now just scribbling on paper; intentionally breaking things, etc.)
9) Complains of being bored (teen); a child whose attention waivers when it didn't before. A child who, during a group reading, who used to sit and listen, now gets up and wanders around.
10) Becomes disruptive in class (both teens and children).
11) Finds it harder to stay on task. Loses concentration easily; is
mentally confused. Finds decisions difficult to make. In a child this might look like the following: unable to match blocks by color when s/he could before; unable to choose between playing ball and jumping rope when the child ALWAYS choose playing ball before. You can think of your own examples, I'm sure.
12) Cannot remember commitments - doesn't keep appointments (teen). As a child, forgets to bring papers home when s/he ALWAYS used to do so; forgets home address/telephone number when s/he has known them for months/years; etc.
13) Has difficulty staying still or conversely, is lethargic (sluggish). This would apply to both a teen and a child. You can picture, in your mind, the teen or child in constant motion; twitching, shaking a foot, or both feet; handling things; etc. OR, the teen or child who sits or lays with that thousand yard stare again. AND, again, this is unusual behavior for your teen or child.
14) Changes in relationships with family and friends. Usually, this change manifests itself in hostility, or in passivity. Arguing when s/he didn't before; or, using the "whatever" answer, when s/he used to talk to you. (Again, don't single this one symptom out; it must be one of many symptoms that your teen or child has.)
15) Stops going out with friends; shows no interest in group outings.
16) Increase or decrease in sexual activity (hopefully, an OLDER TEEN).
17) May start associating with a different peer group (that "bad influence" group as a teen; the "rowdy" kids as a child).
18) Loses interest in activities which once were fun.
19) More conflicts with parents and siblings than usual.
20) Changes in eating and sleeping habits.
21) Expresses inappropriate guilt, feelings of not being good enough, worthlessness, failure. (I can see this in a teen; not sure how this would look in a child. If you can, please let us know.)
22) Expresses hopelessness and having nothing to look forward to.
23) Speaks in a monotonous or monosyllabic manner.
24) Has a preoccupation with self; is withdrawn.
25) Cries easily, looks sad, feels alone or isolated.
26) Has fears about having to be perfect.
27) Fearful of doing something bad. This, in a child, could manifest itself as bedwetting after YEARS of not bedwetting; fear of darkness or "things that go bump in the night" after YEARS of no fear, etc.
28) Incidents of self-injury. Ideas of killing self. (I have no idea of how this would look for a child, and hope never to have such an idea!)


The two most important things a parent can do for your child/teen is to first, KNOW YOUR TEEN/CHILD'S ROUTINE, AND NORMAL DAILY ACTIVITIES so that you can identify any changes; and, LISTEN:
1) listen when your children talk;
2) listen to their music;
3) spend more time with them and be involved in their activities;
4) take them to movies and concerts, and discuss them afterward;
5) know their friends, and listen to them, as well;
6) do not lecture or offer unsolicited advice, or ultimatums; and,
7) do not try to talk them out of their feelings; instead, ask them if they can describe their feelings.

It goes without saying, but I'll say it anyway, learn the above symptoms and know your teen/child. Here are some more things that you, the parent or guardian can do.

8) If a child, go to their day care periodically, and lern their routine; ask the teachers to alert you if their routine changes.

9) If a teen, go to ALL of your teen's teacher conferences to learn the patterns of the normal school day, and ask to be alerted immediately to changes.

10) For both teens and children, know their friends; see if your home can become the "gathering place"; get to know the parents of your child's or teen's friends and agree to let each other know if you see any changes in behavior.

11) In all cases, keep a diary of any changes that you see, so that you will be able to discuss the situation with great clarity and specificity with professionals, should the need arise.

12) Respond with love, kindness, and support if you think that your child/teen is experiencing problems that can lead to depression.

13) Let your child or teen know that you are there, whenever she or he needs you, and do so often and in age-specific (as Dr. Phil would say) ways.

14) Keep trying, but gently, if your teen shuts you out (depressed teenagers do not want to feel patronized or crowded).

15) Do not criticize or pass judgment, once the child or teen begins to talk (the important thing is that he or she is talking and communicating feelings). REMEMBER, NEVER CRITICIZE FEELINGS; everyone has the right to their feelings, even if you think that they are "wrong". Let them be voiced; if inapproptiate, seek professional assistance.

16) Encourage activity and praise efforts.

17) Seek help from a doctor or mental health professional, if the teen's or child's depressed feeling doesn't pass with time (be prepared to list behaviors, note how long and how often they have been occurring, and how severe they seem - hence, the diary mentioned above).

18) Do not wait and hope that symptoms will go away on their own. Better to seek assistance and be told that your teen/child is fine than to let your teen/child become one of the 70% who never receive help.

19) When depression is severe – if teens or children are thinking about hurting themselves or about suicide – seek professional help as soon as possible.

20) Parents of depressed adolescents may themselves need support. Seek out groups of parents who have experience with teen depression

WHEW. This has been a long blog. If anyone has actual stories to share, or any additional information to share, please do so.

Footnote (1): What some of my friends and I did wieh alcohol when we had teenagers; we kept a "mark" (usually hidden so the teens couldn't see it on the bottle) that changed each time we used the bottle. In this way, we could know immediately if the teens were drinking, and could deal with the situation.

Monday, July 04, 2005


Just wanted to do a special blog, today, to wish all who have taken the time to read this blog, a Happy 4th of July! I hope that each of you have been able to make contact with family, friends, neighbors, church members, to interact with. Taking time from our lives to spend time with others is healing in and of itself.

Again, Happy 4th of July!

Thursday, June 30, 2005

SATIVEX; a CANNABIS-BASED pain-killer on sale in Canada 6-20-05

Great news for those who suffer from pain and were using medical marijuana (in the United States), prescribed by their Doctors. On June 20th, 2005, Canada approved the use of Sativex, a cannabis-based painkiller. I say "were using medical marijuana in the US" because in the United States, the Supreme Court ruled earlier this month that federal drug laws supersede medical marijuana laws in the 11 states that have them. The court said medical marijuana users could not be protected from prosecution if the federal government decided to take action.

Canada's decision comes just in time for those who benefited from the use of medical marijuana and wish to continue to use it, with a Doctor's prescription.

Consider the following news items about Sativex, collected from a variety of sources.

  1. Sativex, cannabis-based painkiller for multiple sclerosis patients went on sale Monday in Canada, the first country to approve the spray derived from the marijuana plant. Sativex can now be obtained by prescription through Canadian pharmacies, Bayer HealthCare announced Monday. Bayer markets the drug in Canada for British drug company GW Pharmaceuticals, which developed the drug.
  2. Developed by GW Pharmaceuticals, Sativex is a whole plant medicinal cannabis extract indicated for relief of symptoms of multiple sclerosis (MS) and for treatment of severe neuropathic pain. Bayer has secured exclusive rights to market Sativex in the UK with the option to extend this to other countries in Europe and Commonwealth countries such as Canada.
  3. Sativex is a medicinal mouth spray developed from the major components of marijuana, including tetrahydrocannabinol (THC) and cannabidiol (CBD). It would be the first prescription drug that uses real marijuana extracts and not a synthesized form, according to its proponents.
  4. Early trials of the drug in Britain showed that it was a safe and effective treatment to relieve painful symptoms of multiple sclerosis.

Great news for those who thought that their options for reducing pain had just been reduced.

Tuesday, June 28, 2005

Expert Patient Part #4: HOW to become a 21st Century Patient, by becoming trained in Chronic Disease Self Management

GREETINGS!!! Sorry that it has taken me awhile to complete this series of blogs. For those of us who are indeed 21st Century Patients; who do practice Chronic Disease Self Management; there are times when one must "hunker down" as my Grandmother would say, and REST!! I have had a few of these days, but the rest paid off, and I am now back in business.

How do you become trained in Chronic Disease Self Management? Here are the primary resources available.

1) Start with your own health insurance company. Call up the Customer Service folks in Plan, and ask if they offer "Chronic Disease Self Management Program" classes. My Internet searches indicate that many of the larger companies are offering such classes for their enrolees. And, in some cases, self-management is becoming a requirement of retaining insurance coverage!

2) Go to your State's Home Website, and look up the Department of Health, and of Aging. In some cases they might be the same, in others, different. Call each and see if/when they will be offering classes in your city/county for Chronic Disease Self Management Program.

3) Use one of the many Internet search engines to locate this statement: "(your state) Chronic Disease Self-Management Program (CDSMP)". This should help you locate classes in your state. In my state, they located classes by county and city. Some of the "bigger" states even offer classes derived from the original Standford research program.

4) Use one of the many Internet search engines to ask locate this statement: "Chronic Disease Self-Management Program (CDSMP)". This should provide you with additional options.

Best of luck in your search!

Wednesday, June 22, 2005

Expert Patient: Chronic Disease Management for the 21st Century Patient; Part #3 - WHAT?

OK, after MANY HOURS of Internet research, comes this blog on What is "Chronic Disease Self-Management" all about? Next time, in Part #4, we'll cover the HOW. If you are interested in this concept, where can you find out more about the concept (in general), and actual programs in "your neck of the woods".

Chronic Disease Self-Management; Self-Efficacy; great terms, but what do they really mean?

Consider the following quotations associated with these concepts.
1) "Row Your Own Boat" - Chronic Disease Self-Management.
2) Every bird flies with its own wings." Swahili proverb

What do the two quotations have in common? First of all, the desire, then the knowledge, then the action to take back control over your health, and your life.

Here are questions that you can use to ask yourself about your "readiness" to adopt the concept of Chronic Disease Self-Management (or, to assist someone else in their journey toward this objective).

How confident are you that you can keep the (situation addressed in the question) caused by your disease from interfering with the things you want to do? (Note: this is the "short" test; the longer one contains multiple sub-sections. If anyone wants me to add to this blog the complete set of tests, just ask as a comment to this blog, and I'd be happy to do so.)

For each of the following questions, please choose the number (between 1 and 10) that corresponds to how confident you are that you can keep the symptoms caused by your disease from interfering with the things you want to do? #1 represents "Not at all confident"; #10 represents "Totally confident".

1) How confident are you that you can keep the fatigue caused by your disease from interfering with the things you want to do?
2) How confident are you that you can keep the physical discomfort or pain of your disease from interfering with the things you want to do?
3) How confident are you that you can keep the emotional distress caused by your disease from interfering with the things you want to do?
4) How confident are you that you can keep any other symptoms or health problems you have from interfering with the things you want to do?
5) How confident are you that you can do the different tasks and activities needed to manage your health condition so as to reduce your need to see a doctor?
6) How confident are you that you can do things other than just taking medication to reduce how much you illness affects your everyday life?

The higher you score toward "10" on each question, the more "self-efficacy" you have. (Reminder: self-efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations.) As you can probably figure out, I score either 9 or 10 on each question. My Disabilitykey Workbook (see www.disabilitykey.com) and the confidence that I received by first, executing the processes contined there-in for myself, and then in developing the Workbook to assist others, has allowed my self-efficacy to be high.

OK, you have rated yourself, and you want to know more about the WHAT of this topic. First, we will discuss the definition of Chronic Disease Self-Management; next, the stages of a "chronic disease self-help behavioral change"; and, finally, something called "social learning theory".

Definition of Chronic Disease Self-Management
Based on a comprehensive literature review of over 400 articles, Researchers have proposed the following definition.

Chronic disease self-management involves [the person with the chronic disease] engaging in activities that protect and promote health, monitoring and managing of symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes. There are a number of key elements to this definition that will enable us to develop a practical concept of self-management. It is important to note that these elements are about the behaviors of the patient, rather than models of self-management for health care systems, service providers or health professionals. These elements suggest that self-management:
• Entails engaging in activities that promote health;
• Involves managing a chronic condition by monitoring signs and symptoms;
• Entails dealing with the effect of a chronic condition on personal well being and interpersonal relationships; and
• Involves following a treatment plan prescribed to you by your Doctor(s).

The definition of self-management encompasses a range of behaviors, as well as knowledge and attitudes and is an important starting point towards the development of a concept of chronic disease self-management.

Stages of Behavioral Change
A model of behavior change that has been applied to chronic disease self-management is based on research on how people change behavior, either on their own or within an intervention program (i.e., some sort of action to assist in the change). The theory is that the ceasing of risk behaviors (eg. smoking) and acquisition of health promoting behaviors (eg. physical activity, relaxation) involves the progression through the stages of change. They are:
• Pre-contemplation [not thinking of change]
• Contemplation [thinking of change]
• Determination [ taking preliminary steps to change]
• Action [ actively engaging behavior change]
• Maintenance [ sustained behavioral change]
• Relapse [ can occur at any point.]

Behavioral change is facilitated by a personal sense of control. If people believe that they can take action to solve a problem, they become more inclined to do so and feel more committed to this decision. This "can do" attitude mirrors a sense of control over one's environment. It reflects the belief of being able to master challenging demands by means of adaptive action. It can also be regarded as an optimistic view of one's capacity to deal with stress. (Not to sound redundant, but this really is about the glass being "half-full" and NOT "half-empty".)

Social Learning
OK; now we understand the behavioral change steps; now, on to the social learning stage. The theoretical underpinning of effective chronic disease self-management programs should be based on social learning and behavioral theories. The key principles of these theories as applied to chronic disease self-management are:
• Disease management skills are learned and behavior is self-directed; • Motivation and confidence (including self-efficacy) in managing one's condition dictate an individual's success;
• The social environment (ie. family, workplace & health care system) support or impede self-management; and
• Monitoring and responding to changes in disease state, symptoms, emotions and functioning improve adaptation to the chronic condition.

CONGRATULATIONS! You have managed to get through the information comprising the "WHAT". Next, in part #4, we'll discuss the "HOW".

Tuesday, June 21, 2005

The expert patient: a new approach to chronic disease management for the 21st century Part #2

Expert Patient: A new approach to chronic disease management for the 21st century, Part #2.

Hope that all of you had a fantastic Father's Day, and week-end. I had saved up my strength last week, and will have to do double resting this week, but it was well worth it to be able to spend the week-end with a friend. See, this is a perfect example of me being able to manage my chronic disease and still live my life to the limits of my capabilities!

This blog will discuss the "Why" of chronic disease management. Part #3 will discuss the "What"; and, Part #4 will actually provide you with some information about the "How".

For those of you who have had an opportunity to read about my professional career, you will see that I started out as a "Federal Auditor" of Human Resources practices, policies and procedures (which is why I was able to create the Disabilitykey Workbook in the first place). As an Auditor, I always wanted to know what is the "ROI" (Return on Investment) as they say in the business world. Why would people with chronic illnesses want to learn how to manage their disease symptoms? Why would their Doctors want them to learn and do these things? What is in it for both patients and Doctors?

First of all, it was a fascinating subject for me to research! And, imagine my surprise to learn that, even though the original study was conducted here in the United States at Stanford University, it appears that, at this point in time, England, Scotland, and Australia appear to be further along in actually implementing programs than we are here in the US! And, when we get to part #4, imagine my chagrin to find out that the great online training program to become certified in chronic disease management, you have to live in England! Bummer, big time!

Oh, to clear up one point from the first in this series: the definition of "self-efficacy". Here is the definition used in the context of chronic disease management: Self -efficacy is the belief in one's capabilities to organize and execute the sources of action required to manage situations associated with one's chronic illness.

We begin the WHY part of this subject in the United Kingdom, where their Department of Health came to the following conclsion:

Little has been done to prepare patients for long-term management of their diseases. They face many challenges in coping with discomfort and disability and carrying out treatment programs on a regular basis. They need to modify behavior to minimize undesirable outcomes, adjusting their social and work lives to accommodate their symptoms and functional limitations and deal with the emotional consequences. For their care to be effective, they must become adept at interpreting and reporting symptoms, judging the trends and tempo of their illness and participating with health professionals in management decisions. (Note: language has been "Americanized" for greater ease of understanding on, what they call, "this side of the Pond".)

It was the chief medical officer for England, who first introduced the name “expert patient". He said that expert patients are "people who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases." Doesn't this sound logical?

Here are some Chronic Illness statistics here in the US.
  • In the US for example, LESS than ONE PERCENT of the people who stand to benefit from self managing their chronic arthritis - do so.
  • Chronic disease has become pandemic in the United States, and estimates are that it will affect 148 million people by the year 2030.
  • Patients with chronic illnesses cost the health care system over three times more than individuals without chronic conditions.
  • The Population of U.S. adults over 65 is expected to double between 2000 and 2030.
  • Over 80% of adults over 65 years of age have one or more chronic conditions -- over 60% have two or more chronic conditions.
  • Consumers with five or more chronic conditions account for two-thirds of all Medicare spending.
  • People with chronic conditions are responsible for 78% of all health care spending, 95% of all Medicare spending, and 77% of all Medicaid spending for community-dwelling adults.
  • The U.S. has by far the most expensive health care system in the world -- but lags most other developed countries in key quality and consumer outcomes.

Wow! These facts really shocked me! And, let's talk about those "lengthy" 15 minute Doctor visits! Consider this:

On average, a patient spends around three hours per year with a health professional. This means that the patient is left to manage his/her own condition for the other 8757 hours of the year. If you, or someone you know has a chronic illness, wouldn't you be more comfortable knowing what to do during those "other" 8,757 hours that you are not in a health professional's presence? I sure did, and I didn't even know that such a thing as chronic disease management as a concept existed when I did the work depicted in the Disabilitykey Workbook. I only knew that I needed a way to live the best possible life IN SPITE of my chronic disease; I wanted to control it; I did NOT want it controlling me!

OK, chronic disease management just seems to make sense. But, the Auditor in me asks, are there measurable, objective results that this concept is worthwhile? And, according to the Agency for Healthcare Research and Quality (AHRQ), there are.

AHRQ-funded research at the Stanford University Patient Education Research Center led to development of the "Chronic Disease Symptom Management Program" (CDSMP). (Note: it is this Chronic Disease Symptom Management Program that we will discuss in part #4. England has this program that they refined for them online, but you have to live in England to sign up to take it.)

Standford's CDSMP is a 17-hour course taught by trained lay people that teaches patients with chronic disease how to 1) better manage their symptoms, 2) adhere to medication regimens, and 3) maintain functional ability.

Over a period of 2 years, AHRQ-funded investigators compared health behaviors, health status, and health services use in patients age 40 to 90 years (average age, 65) who had completed the CDSMP. When compared to baseline measures taken for the 6 months prior to the CDSMP, researchers found the following.

  • After 6 months, CDSMP participants had:
    Increased exercise.
    Better coping strategies and symptom management.
    Better communication with their physicians.
    Improvement in their self-rated health, disability, social and role activities, and health distress.
    More energy and less fatigue.
    Decreased disability.
    Fewer physician visits and hospitalizations.

After 1 year, CDSMP participants had:
Significant improvements in energy, health status, social and role activities, and self-efficacy.
Less fatigue or health distress.
Fewer visits to the emergency room.
No decline in activity or role functions, even though there was a slight increase in disability after 1 year.

  • After 2 years, CDSMP participants had:
    No further increase in disability.
    Reduced health distress.
    Fewer visits to physicians and emergency rooms.
    Increased self-efficacy.

I find these facts wonderful, and very rewarding to know. Stay tuned for our next blog about the WHAT of Chronic Disease Management. As always, if you want to make a comment, ask questions, or contribute to this information, please feel free to do so.

Friday, June 17, 2005

The expert patient: a new approach to chronic disease management for the 21st century

Are You an "Expert Patient"? Can your Doctor(s) say the following about you?

"My Patient knows more about the disease than I do; as much about the disease as I do, and enough about his/her symptoms that it is easy to communicate with him/her."

Assisting you become an Expert Patient is the goal of Disabilitlykey - the website of www.disabilitykey.com and these blogs.

Why is becoming an Expert Patient so important? There is plenty of emerging research about the needs of 21st century patients. Most of that research centers around the concept of "Illness Self-Management" for what is called "chronic illness".

What, you ask, is a "chronic illness". Consider the following.

Health concerns are usually classified as either acute or chronic. Acute illnesses usually begin abruptly and last only a short time. Most people with an acute illness can expect to return to normal health. A strep throat is an example of an acute illness: it is easy to diagnose with a lab test and is cured with antibiotics.

Chronic diseases are different. They usually develop slowly, last long periods of time, and often are never cured. In most cases, there is no cure. The long-term effects may be difficult to predict. Some conditions cause few problems. Others cause only episodic problems or symptoms that can be controlled with medication. However, in some cases, a chronic disease may severely limit a person's ability to work, go to school or take care of routine needs. Examples of chronic diseases include, but are in no way limited to: diabetes, congestive heart failure, asthma, hypertension, chronic kidney disease, depression, irritable bowel syndrome, arthritis, emphysema, fibromyalgia, parkinsons symdrom, and multiple sclerosis - just to mention a few.

Why is "Illness Self Management" so important a concept for those with a chronic condition?

For the person with a chronic condition, there is no way not to self-manage the disease/illness. If one retires from life and stays at home as a depressed person this is a type of self-management. On the other hand, many people learn to deal with their conditions and remain active, happy participants in life. One can learn the skills necessary for this later type of proactive self-management.

And, it is the learning of the skills necessary for this later type of proactive disease/illness self-management that will be the subject of the next series of blogs. The information about developing the skills is fascinating; and, they (the skills) really are the key to DECIDING, and remaining active, happy participants with a quality of life as full as you can make it.

Research and practical experience in North America and Britain are showing that today’s patients with chronic diseases need not be mere recipients of care. They can become key decision-makers in the treatment process. By ensuring that knowledge of their condition is developed to a point where they are empowered to take some responsibility for its management and work in partnership with their health and social care providers, patients can be given greater control over their lives. (Note: Once again, this process of acquiring the knowledge of your condition so that you can reach the self-management level with your Doctor(s) is the purpose behind disabilitykey.)

Self-management programs can be specifically designed (between you and your Doctor(s)) to reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy (a big word that basically means self reliance).

As a last thought for this blog, the disease/illness self management covers the following areas:

1) knowing how to recognize and respond to changes in a chronic disease
2) dealing with problems and emergencies
3) using medicines and treatments effectively
4) finding and using community resources
5) getting enough exercise
6) coping with fatigue, pain and sleep problems
7) maintaining good nutrition
8) making decisions about when to seek medical help
9) working with your doctor(s) and other care providers
10) talking about your illness with family and friends
11) managing work, family and social activities

As always, if you have any questions or comments about this, or any disabilitykey blog, please feel free to do so.

Stay tuned for more about Chronic Disease Self-Management!

Tuesday, June 14, 2005

Depression (Adult); Ways to Self Identify

Depression. What is it? Why would a normally healthy, optomistic person get depressed? If things go wrong, don't you just talk yourself out of feeling sorry for yourself? So what if your 23 year marriage ends, and your soon-to-be ex-husband moves in with your best friend; you are left to cope with 2 devestated teenagers; you loose your father and father-in-law to cancer; you have extreme job challenges; and, your new condo, purchased without REALLY knowing what to look for (just don't buy a home with a laundry room upstairs over the living room!) and you develop a roof leak, and a laundry leak into the living room. AND, you are the primary care giver for a very needy Mother.

You can handle all of this, right? And, when, the next year, you loose your Mother and Grandmother to cancer too, it doesn't send you over the edge, does it? Particularly when you also have Multiple Sclerosis, which has been misdiagnosed for over 35 years, and the worst thing for MS is stress and anxiety. You can handle everything, right?

Well, I found that I couldn't. Consider the following list of symptoms that one should review if you think that you might be suffering from depression. OR, if you, like me, are convinced that you CAN HANDLE IT, if the rain would just stop; or, if the roof would just stop leaking (I've already tried to get it fixed 2 times, and it hasn't yet worked; I now have a gallon bucket sitting in the front hallway to catch the water leaking from the hole in the roof); or, if the kids would just stop being "normal" teenagers, when you no longer have a husband to help you in the day-to-day coping with teenagers.

Here is a checklist of symptoms of depressive illness:
1) Loss of energy and interest.
2) Diminished ability to enjoy oneself.
3) Decreased -- or increased -- sleeping or appetite.
4) Difficulty in concentrating; indecisiveness; slowed or fuzzy thinking.
5) Exaggerated feelings of sadness, hopelessness, or anxiety.
6) Feelings of worthlessness.
7) Recurring thoughts about death and suicide.

I remember clearly my "last straw". I read the list, above, and was sure that these 7 symptoms did NOT describe me. Then, with all of my water problems at home, I went to work in my 4th (top) floor office that just happened to have a flat roof. While on the phone arguing with the roofer who claimed that my roof shouldn't be leaking, and my telling him that it still was leaking, and if he didn't believe me, he could just come over and see my bucket full of water in my entry way, when I heard the familiar "pitter-patt" noise that freaked me out at home. I looked up at my office ceiling just in time to see water beginning to gush out of the ceiling tiles, around the hanging lights, and pour into my office. That did it. I went home. That night, I awoke thinking that I heard the "pitter-patt" in the upstairs laundry room, dripping water into my living room. I got up, turned off the water to the washing machine; stuffed all of my towels around the washer, and stood with my back against the wall in my first ever anxiety attack, thinking that if this was what my life had become, why would I even want to continue living it?

This event scared me into going to my Doctor. He had a great little "depression" test for me. Knowing my fragile state, he asked me the statements, and, based both on my answers and on the detailed symptom impairment document that I had started preparing for him, prescribed an antidepression medication for me.

I learned two critical things that day - three, really. The first one is that it is critical to have a Doctor that you trust, that knows you, and that LISTENS to what you are saying. Secondly, since he knew about my MS, he told me that Depression was a frequent secondary symptom of MS. (At that time, I hadn't done my MS symptom research yet; the Disabilitykey Workbook, found at www.disabilitykey.com is the ultimate result of all of my symptom and system - Long Term Disability and Social Security Disability Insurance - research for myself.) Third, I learned that no matter how strong your personality is, and no matter how positive a person you are, Depression is NOT something you can get over by just "thinking positive thoughts"; by "keeping a stiff upper lip". If you truely think that you are suffering from Depression, there is nothing wrong from talking to your Doctor, and seeking his advice.

All that I have discussed so far happened over a dozen years ago. I am still taking antidepression medication, and it does help. I have searched high and low for the original test that my Doctor used on me, and finally found one at one of my favorite resources, called the "Institute for Algorithmic Medicine" (that's academic talk for medical condition tests). The test is "The Zung Self-Rating Depression Scale". As you read the following questions, ask yourself where the statement ranks on the following scale:

1) A little of the time for me.
2) Some of the time for me.
3) A good part of the time for me.
4) Most of the time for me.

I fell down-hearted and blue.
Morning is when I feel the best.
I have crying spells or feel like it.
I have trouble sleeping at night.
I eat as much as I used to.
I still enjoy sex.
I notice that I am losing weight.
I have trouble with constipation.
My heart beats faster than usual.
I get tired for no reason.
My mind is as clear as it used to be.
I find it easy to do the things I used to.
I am restless and can't keep still.
I feel hopeful about the future.
I am more irritable than usual.
I find it easy to make decisions.
I feel that I am useful and needed.
My life is pretty full.
I feel that others would be better off if I were dead.
I still enjoy the things I used to do.

This little test, with your self rating for each statement, and with your symptom impairment documentation, so that your Doctor knows more about you and what is going on in your life, s/he can best decide what to do to help you better achieve a higher quality of life. Perhaps antidepression medication isn't what you need, something else would be better for you. But, if you don't learn, document, seek help, and discuss with your Doctor, s/he can't help you help yourself.

Many of you are probably asking yourselves how I can just put myself out there; just put into these bloggs what is going on in my life. I'm doing this, sharing these experiences so that you can know that I have been there; I've done that; I've got the t-shirts! For more about me, check out the "about us" section in the website: www.disabilitykey.com.

Monday, June 13, 2005

Increasing Prescription Drug Costs; Can't Afford? What to Do?

This Blog presents some statistics about the future cost of American Health Care in general, and prescription drugs in particular. If you do not already have a Health Insurance Plan that contains a prescription drug coverage component, you might seriously consider getting one soon. If you cannot qualify for one, or cannot afford one, the later part of this Blog provides criteria and requirements for enrollment into Free Medicine Plans.

Consider the following facts about American Health Care costs (source: the National Coalition on Health Care).

1) In 2003, health care spending in the United States reached $1.7 trillion, and was projected to reach $1.8 trillion in 2004.
2) Health care spending is 4.3 times the amount spent on national defense.
3) In 2003, the United States spent 15.3 percent of its Gross Domestic Product (GDP) on health care. It is projected that the percentage will reach 18.7 percent in 10 years (by 2013).
4) Although nearly 45 million Americans are uninsured, the United States spends more on health care than other industrialized nations, and those countries provide health insurance to all their citizens. Health care spending accounted for 10.9 percent of the GDP in Switzerland, 10.7 percent in Germany, 9.7 percent in Canada and 9.5 percent in France, according to the Organization for Economic Cooperation and Development.
5) Total out-of-pocket spending (that is, out of your pocket and my pocket) on health care rose $13.7 billion, to $230 billion in 2003.

Bringing this information a little closer to home, we find that in many cases, prescription drugs are too high relative to the cost of living for a segment of the population. And,a large proportion of senior citizens literally can’t afford to both buy drugs and put food on the table.

However the numbers get crunched, we are paying more for our medicines. The popular sleeping pill Ambien, which is advertised directly to consumers, jumped 11.9 percent last year. A month's supply could cost about $100, more than $3 per pill.The price of your medicines might give you a migraine, but treating it will be pricey. Imitrex, one of the most successful migraine medications, can run $20 a tablet.OK, what if you cannot afford your medical costs. Or, like the woman mentioned above, you can pay for your medications or your food. What can you do?

There are programs available, for those who qualify, where your medications will be paid for for you. Consider the following.

Who can be Approved for Free Medicine Enrollment?
People of ALL AGES nationwide.
Seniors and retired people.
People on Social Security.
People on Social Security Disability or SSI.
People on a fixed income.
Single people.
Working people.
People without jobs.
People who are taking care of loved ones and paying for their prescription medication because they (the people who need the medications) can’t.

OK, I'm in one of these "who" categories. Now, what are the requirements for qualification?

Requirements for Free Medicine Enrollment are:
1) People without prescription insurance coverage (public or private).
2) People with household incomes at a level that paying for medicine at retail prices poses a hardship. (I'm sure that this will have to be documented.)
3) People who make too much money to qualify for public assistance e.g. Medicaid.

General Income Eligibility Criteria: Individuals with family incomes ranging from below the national poverty level up to $38,000, and in some cases, families with annual incomes as high as $60,000 can receive free drugs.

Each sponsored drug has it’s own eligibility criteria.

Circumstances that may also allow for free medicine eligibility:
1) People who have maxed out their prescription insurance coverage.
2) People on Medicaid, (state public assistance) but have prescriptions Medicaid does NOT cover or have exceeded the prescription drug limit for this calendar year.
3) People on Medicare with no outpatient prescription coverage.
4) Some, but not many sponsors offer help for people who cannot afford their co-insurance fees.
5) People who have reached a cap on their outpatient prescription drug insurance coverage.
6) People who have medical insurance coverage, but NOT prescription coverage.

On occasions, some sponsors will make an exception on a case-by-case basis or in extreme or extenuating circumstances. It never hurts to ask.
Leading drug companies have pledged, “No patient in need of medicines will do without them.”

So, you believe that you, or someone you know qualifies for free medicine. How do you go about getting it?

1) First of all, if you have access to a computer (and they are available in public libraries), and if you have a prescription with a leading drug company, use a search engine to look up that drug company's website. There should be a "contact us" button that should allow you to contact the company and inquire if they offer a program.

2) Most states have a place where you can inquire about free medicine plans.

Best of luck in your search.

Vioxx, Bextra, Celebrex CURRENT (6-05) Alternatives

How many of us taking Vioxx, when it was taken off of the market, changed to Bextra? ME!! Then, when Bextra was taken off of the market, how many of us changed to Celebrex? ME, again! What will happen to us when Celebrex is taken off of the market? We need to explore this situation, look at today's alternatives, and, in discussions with our Doctors, decide what we do then; and, decide now, before then gets here!

Remember: this blog in no way prescribes any course of action; it does not offer any medical advice; that is between you and your Doctor(s). Its purpose is to empower you with information to assist in those conversations, to get the help that you need to live as high a quality of life that you can.

First and foremost, and, not to sound too much like a broken record, we each need to know our symptoms - all of them - and their direct and specific impact on us.

Next we need to know about Vioxx, Bextra, Celebrex, and what the current alternatives are. Then, we can discuss these alternatives with our Doctors.

OK, you have to do the part about your symptoms yourself. For assistance check out the website www.disabilitykey.com.

Finally, before we begin, I found the following information in over a doxen of websites, and have summarized the data here for you.

What are Vioxx, Bextra, and Celebrex?

These three drugs are part of a large group of drugs called "nonsteroidal anti-inflammatory drugs" or NSAIDS. They are part of a further subset within NSAIDS called "Cox-2 inhibitor (selective)". Now, there are a lot of additional NSAID medications; there are even "Cox-2 inhibitor (preferential)" drugs.

Alternative Suggestions

Alternative suggestions generally fall within three categories.

1) Other NSAIDS with a specific dosage calculated for only you, based on your symptoms (see why they are so important to document?). These seem to fall within OTC (over-the-counter) medications of Aleve, Motrin, and Advil. However, your Doctor can prescribe specific dosages for you.

2) There are certain additional drugs in the "Cox-2 inhibitor (preferential)" category that might be effective for you, based on your symptoms. These you will have to discuss with your Doctor to get the names.

3) "Natural Alternatives" These natural alternatives include, but are not limited to the following: curcumin, glucosamine with chondroitin, borage oil (containing high doses of gamma linolenic acid), or high doses of omega-3 fish oils. In addition, many suggest that accupuncture, non-impact exercises, and different diets.

If you have any additional suggestions or recommendations, we would love to hear them.

Sunday, June 12, 2005

Fibromyalgia - CURRENT Symptom Management & Medications, Part #2

Fibromyalgia symptom management can be summarized in the following 4 key points:

1) Working with your Doctor(s) to identify and prescribe appropriate medications;
2) Under your Doctor(s)' care, establishing exercise programs that stretch muscles and improve cardiovascular (aerobic) fitness;
3) Learning and using relaxation techniques and other measures to ease muscle tension and anxiety; and,
4) Learning all that you can about your body and your illness' impact on you to assist you in better understanding how to manage the symptom impairments toward a better qualify of life.

Most of the sites that I researched about fibromyalgia medications indicated that patients who have, or believe that they have the disease, use a long list of medications, but none of the medications used for treating fibromyalgia symptoms were actually developed for fibromyalgia, or even approved by the FDA for treating it. It is also very important to understand that medications will not cure fibromyalgia; however, the better you know your symptoms, the better you can work with your Doctor(s) to identify ways to decrease your symptom impacts. Some of these ways might be with medications; some might be with behavior modification (i.e., stretching).

As a matter of fact, if you refer to an earlier blog about Multiple Sclerosis symptoms and their medications, you will find a great similarity to fibromyalgia symptom medications. For example: the primary symptoms affecting fibromyalgia patients are pain; problems with sleep; depression; and muscle twitches.

Unlike the MS blog, I've grouped the fibromyalgia symptoms most known; then, I have added some specific symptoms and their associated medication options.

Allergic reactions to foods and/or chemicals
Loss of balance and dizziness
Skin is easily irritated
Extreme fatigue
Sensitivity to bright lights or noises
Jaw pain
Loss of memory accompanied by difficulty concentrating
Menstrual pain
Sensitive to dairy products
Stiffness when walking and especially in the morning

1) Pain medications

Pain medications used to treat fibromyalgia symptoms range from OTC (over-the-counter) medications like acetaminophen, aspirin, and ibuprofen to prescription medications. A lot of prescription pain medications are those that directly impact severe muscle pain. You really need to check with your Doctor(s) for a prescription pain medication. (Note: in a later blog we will discuss what is happening with the best known of these prescription pain medications such as Vioxx, Bextra, and Celebrex.)

2) Antidepressants

The research that I have done suggests that something called "Tricyclic antidepressants", when taken at bedtime, in dosages lower than those used to treat depression, can help the patient suffering from fibromyalgia rest easier, and fall asleep. Some examples of these include: amitriptyline; cyclobenzaprine, doxepin, and nortriptline.

3) More complicated pain, depression, and fatigue

There is a type of antidepressant called "Selective serotonin reuptake inhibitors" or SSRIs. If the antidepressants in #2 don't work well enough, some doctors will combine a #2 with an SSRI such as floxetine, paroxetine, and sertraline. The problem with the SSRIs is that they may cause problems with a patient's ability to sleep, increasing fatigue. This is why it is so critical for you to know your body, its symptoms, and how those symptoms impair your daily (and nighttime) symptoms! Your Doctor(s) can't help you unless you help them with accurate, specific information.

For additional symptoms, like bowel and bladder problems, and muscle cramps, check out the Multiple Sclerosis medications blog.

We sincerely hope that this blog gives you ideas to discuss with your Doctor(s). Please comment and/or ask any additional questions about this blog, or any other.

Thursday, June 09, 2005

Fibromyalgia - CURRENT Symptom Management & Medications, Part #1

Fibromyalgia. Sounds complicated, doesn't it? In point of fact, it is - for those who have it, and their support systems.

First off, I need to explain why it is so important for those who believe that they have Fibromyalgia, and are thinking of starting the paperwork for LTD and/or SSDI, to thoroughly understand their bodies, their symptoms, and the impact their symptoms have on their ability to perform the essential functions of their job and their normal daily life. It has to do with the definition of "disability".

An individual will be determined to be disabled if their impairment (i.e., symptom impairments) meet or equal the requirements of what the Social Security calls their Listing of Impairments (also known as their "Blue Book"). This is a list of physical and mental illnesses that the Social Security Administration (SSA) considers to be so severe that they warrent an automatic finding of disability, assuming that you can document/prove that a) you have that illness, and, b) that the illness' symptoms impair your normal daily living activities.

However, if an impairmenent (illness) is not listed in the "Blue Book", and Fibromyalgia is not listed, this documentation can become significantly harder. An impairment (illness) must meet or equal the Listing Requirements by demonstrating that they are unable to perform work that they did in the past 15 years and that they are unable to do any other type of work considering residual functional capacity, age, education, and work experience. And, to make the situation even harder, it is important to know that the proof of symptom impairment - the documention of this impairment and its impact on your normal daily living activities - is the responsibility of the claimant and their supporting Medical team!

The detailed, How-To process of just how you document your symptoms and their impairment, and how you communicate with your Doctor(s) so that they can assist you in showing how these impairments impact your normal daily living activities can be found at our website: www.disabilitykey.com.

So, you believe that you have Fibromyalgia. We'll close today's posting with the primary symptoms associated with the disease. Tomorrow, in Part #2, of: Fibromyalgia - CURRENT Symptom Management & Medications, we will discuss the symptom management and medications.
Fibromyalgia Primary Symptoms

1) Allergic reactions to foods and/or chemicals
2) Loss of balance and dizziness
3) Skin is easily irritated
4) Extreme fatigue
5) Sensitivity to bright lights or noises
6) Headaches
7) Diarrhea/Constipation
8) Jaw pain
9) Loss of memory accompanied by difficulty concentrating
10) Menstrual pain
11) Sensitive to dairy products
12) Stiffness when walking and especially in the morning

If you have any questions about this subject, or any other subject-matter in these Disability Key blogs, feel free to add a comment/question, and we will answer them.

Wednesday, June 08, 2005

How Much Disability Insurance is "Enough"?

Research shows the following about employer-offered STD (short term disability) and LTD (long term disability).

Disability Insurance: ( 2003) In small private firms, fewer than one-quarter of workers have short-term disability coverage (22%), and just 13 percent have long-term disability income insurance, according to the Bureau of Labor Statistics.

Half of workers at large employers (100 or more employees) have short-term disability income insurance (47%), and more than one-third have long-term disability coverage (40%).

Disability coverage (American Council of Insurers 2004) 82% of employees are lacking in adequate coverage.

The Society of Actuaries says that only 2.5% of employees have individual disability coverage (i.e., paid for by the employee and not the company).

If you have already read the other blogs about Disability insurance, you know how important it is to know about what types of insurance you have, and how much each insurance will pay out, if and when you need it.

Now, you know how much your STD and LTD will pay out each month. The question is, how much SHOULD YOU HAVE?

There are some simple ways to determine just how much is "enough", and it varies for each family.

1) Sick leave - maintain at minimum 5 days, and, at best, 10 days. In this way, you will be able to meet a usual time gap before your STD kicks in.

2) STD - most STD policies cover up to 26 weeks. To make sure that you have "enough" STD TIME coverage, the weeks should cover your LTD's elimination period.

3) LTD - timewise, you will want your LTD plan to cover you until your retirement age. (Note, not all retirement ages are at 65. The retirement ages are increasing; make sure that you know your specific retirement age.)

Now, let's talk about money. To calculate how much money is needed by you and your family, consider the following.

For each month, note the following.

1) OUTGO Your "must pay" expenses (including, but not limited to the following: house payment; utilities; car and gasoline; medical expenses; any child care; any loans, credit cards, etc.)

2) INCOME ON DISABILITY Add together any income other than yours (i.e., spouse's income) plus whatever you will receive on a monthly basis from your company-paid STD and/or LTD. Add to this amount whatever savings you have, and how long this would last.

The gap between income on disability and outgo would be the amount of income that you might want to offset with a private LTD policy.

If you have additional questions on this topic, please feel free to write on this blog, and your questions will be answered.

Tuesday, June 07, 2005

Multiple Sclerosis - CURRENT Symptom Medications

So, your Doctor tells you that you have a disease. You know that you have symptoms that impair you in your every day life, but you want your Doctor to give you something to make the pain/symptom go away!

What is the best medication for your symptoms, for your illness? Remember, only your Doctor can help you. However, the better informed that you are about what is out there, the better you can discuss alternatives with your Doctor(s).

We are beginning a series of Disease-specific "current medication" blogs.

The first illness we are addressing is Multiple Sclerosis. The following information comes from the National MS Society website. Now, most disease medication lists start with the brand name first, with the SYMPTOM that it is to address almost as an after thought. BUT, we, the patients, start with the symptom first, so that's how I have decided to sort the medications. Here goes. Oh, one more thing; where there is not brand name, or where the chemical name is available without a perscription, you will find the chemical name in red; products available without a prescription are so indicated (+).

Once again, this will provide you with information to discuss with your Doctor. By having options of medications for a symptom, you and your Doctor can discuss which treatment would be best for you, given your other symptoms, your specific condition, and any other factors that only your Doctor can know. And, if you do not know what the symptom means (I'm not sure that I know what "Paroxysmal itching" is) you can ask your Doctor, and learn something new!

  1. Fatigue Amantadine; Cylert; Provigil
  2. Spasticity Baclofen; Dantrium; Intrathecal Baclofen (ITB Therapy); Valium (muscle spasms); Zanaflex
  3. Constipation Mineral oil (+); Colace (Docusate (+)); Dulcolax (Bisacodyl (+)); Enemeez Mini Enema (Docusate stool softener laxative (+)); Fleet Enema (Sodium phosphate (+)); Metamucil (Psyllium hydrophilic mucilloid (+)); Phillips' Milk of Magnesia (Magnesium hydroxide (+)); Sani-Supp suppository (US) (Glycerin (+))
  4. Erectile dysfunction Papaverine; Cialis; Levitra; MUSE; Prostin VR; Viagra
  5. Nausea; Vomiting; Dizziness Antivert (US), Bonamine (Can)
  6. Paroxysmal itching Atarax
  7. Disease-modifying agent Avonex; Betaseron; Copaxone; Novantrone; Rebif;
  8. Urinary tract infections Bactrim; Septra; Cipro; Macrodantin
  9. Urinary tract infections (preventative) Hiprex, Mandelamine (US); Hip-rex, Mandelamine (Can)
  10. Urinary tract infections (symptom relief) Pyridium
  11. Urinary frequency DDAVP Nasal Spray; DDAVP Tablets
  12. Bladder dysfunction Detrol (US); Ditropan; Ditropan XL; Oxytrol (Oxybutynin Transdermal System); Pro-Banthine; Sanctura; Vesicare (US)
  13. Bladder dysfunction; Pain Tofranil
  14. Depression Effexor; Paxil; Wellbutrin; Zoloft
  15. Depression, Pain (neuropathic) Cymbalta
  16. Depression; Fatigue Prozac
  17. Tremor Laniazid; Nydrazid
  18. Tremor; Pain; Spasticity Klonopin (US), Rivotril (Can)
  19. Acute exacerbations Decadron; Deltasone; H.P. Acthar Gel; Solu-Medrol
  20. Pain (dyesthesias) Dilantin; Neurontin
  21. Pain (paresthesias) Elavil; Pamelor (US), Aventyl (Can)
  22. Pain (trigeminal neuralgia) Tegretol

Now that you have read all 22 categories of Multiple Sclerosis symptoms that HAVE a medication that might mitigate it, and know of many others that have no associated medication, I'll bet that you are asking yourself how do I make the link between knowing that I have one or more of these, and explaining how this symptom impairs me? If you have these questions, please check out our website at www.disabilitykey.com. Also, ask questions on these blogs.

Sunday, June 05, 2005

Divorce; lost Health Insurance Question about self and children

Recently, I had a question from someone who was going through a divorce and was concerned about lost health insurance coverage because she was covered under her husband's insurance. She was concerned not just for herself, but for her children as well. This question comes up a lot. See is this answer helps you better understand what to do. If you have additional questions on this topic, feel free to add to the blog, and I'll answer them.

Medical Insurance and Divorce
To answer your questions specifically, here are some ideas to consider.

1) You and your children are automatically covered under your husband's insurance as a dependent until you divorce.

2) When your divorce is final, you have the opportunity to continue your husband's insurance by triggering what is called "COBRA". (Note: there is another blog entry that defined COBRA.) This will continue your coverage for an additional 18 months; unfortunately, you will have to pay the full cost of the coverage (and the company can have you pay 102 - 105% of the coverage cost).

Your children, by law, will becovered under the parent's coverage whose birth date occurs first in the calender year.

3) One suggestion is that when you hire an Attorney to assist with your divorce, you might want to ask, in the settlement negotiations, to have the price of the COBRA payments included in your settlement. This would be particularly important if you happen to have the early-in-the year birthdate, and will be paying for the children's health insurance coverage. This cost should not have to come out of your child support, as it can be VERY EXPENSIVE.

4) Whatever you decided to do, keep all documents together. Whenever you talk to anyone, document to whom you talk, get the name and tele #, and what was said by all in the conversation as soon as possible after the conversation. In this way, you document what is said, and do not have to rely on memory. Also, when you send anything to anyone, keep a copy for yourself, and send it by registered mail, so that you have proof of receipt. Please feel free to contact me again with additional questions as you continue your journey.

Disability Insurance and Medical Insurance Definitions

Tonight is Sunday evening. I hope that you all had a fantastic Sunday. I have a 21 month old granddaughter who is the light of my life. This week-end she counted up to 10! However, I think that she believes that "six-seven" is one number. What fun.

Disability and Medical Insurance definitions. You have plans, and you have read about such things as: COBRA, OBRA, Own Occupation, Any Occupation, etc., and you REALLY want a simple definition. Well, we have them for you.

To see a Timeline that makes graphic sense about all of these definitions, please see www.disabilitykey.com. To ask a question, add onto one of these blogs.


1. ACTIVE: Active medical insurance coverage means that you and/or your family are covered by a medical insurance plan. Usually, these plans are “group” plans carried by your, or your spouse’s employer (in which case, you are the “covered dependent”).

2. COBRA: COBRA is an acronym for “Consolidated Omnibus Budget Reconciliation Act”. It refers to an active medical coverage person’s ability to continue coverage as an inactive participant for 18 and, sometimes 36 months, when a “triggering event” occurs. Loss of active coverage status is a triggering event. A triggering event includes, but is not limited, to the following: loss of active coverage because the primary covered person lost his/her job (for any reason); divorce; a covered child's age exceeds that covered in the Plan. The cost of COBRA coverage is at least 100% of the Employer's cost, and can be 102% or 105%.

3. OBRA: OBRA rules allow a “qualified” disabled person to extend COBRA for an additional 11 months based on disability. There are key conditions; 1) the person must be SSDI qualified; 2) the person must request OBRA within the first 60 (sometimes 30) days of having received the SSDI determination letter; and, 3) the Plan Administrator may charge 150% of the COBRA price for coverage.

4. Medicare: When a person becomes SSDI-qualified, s/he is eligible for Medicare 24 months from the date of the first month of SSDI payment. As there is a 5-month waiting time from SSDI-qualification until the first month of payment (and this occurs the second Wednesday of the months AFTER the 5th month), the actual waiting time is 29 months.

5. HIPAA: HIPAA is an acronym for Health Insurance Portability and Accountability Act of 1996. It is a way for people who either do not choose COBRA, or who need to trigger additional health insurance before Medicare, to obtain some coverage.

6. 30-180 day Elimination Period for LTD: In most cases, a company’s LTD (long term disability) plan has an elimination period of time equal to the length of the company’s STD (short term disability) coverage. During this time, the employee is expected to obtain income any way s/he can.

7. Own Occupation: To be found “disabled from your own occupation” means that you have been determined to be unable to perform the “work” that you had successfully performed prior to evidence that your illness/injury symptoms impaired your satisfactory performance of the essential duties of your job. The key here, is that the evidence must prove that your inability to successfully perform your “own occupation” must ONLY be attributed to impairment caused by the symptoms from your proven, documented, disabling illness/injury.

8. Any Occupation: To be found “disabled from any occupation” means that, in spite of your age, level of education, and previous job history, the symptoms of your proven, documented disabling illness/injury impair you from performing work of any occupation. The reason, for LTD insurance purposes, that this impairment from performing work of any occupation is periodically reviewed, is that there are times when a person’s physical capabilities can improve. Disability pay only continues as long as there is proven evidence that the symptoms impair “work”. Often the "periodic review" occurs annually.

If you have any additional questions about any of these definitions, please ask them.

Thursday, June 02, 2005

Different Types of Disability Insurances Part #2


You have read the information about the need for disability insurances, and have checked out your company benefits to find that you DO NOT have short term disability (STD) or long term disability (LTD) plan coverage. If this is your situation, read the following.
The time to do so is BEFORE you need to use that insurance!

The rest of you have checked out your company benefits and find that you DO have STD and LTD plans. Now you want to learn more about Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

(Note: a denial on behalf of an insurance company for LTD does not necessarily have an impact on your ability to successfully apply and be accepted for SSDI coverage.)

Social Security Disability Insurance

If you qualify for Social Security (i.e., if you have acquired at least 40 quarters of Social Security contributions) and are suffering from a disability, you may be able to receive monetary benefits from the Social Security Administration. Also, in some situations these disability benefits may be awarded to you and your dependents.

Social Security Disability Benefits or SSDI are paid to individuals who have worked in the recent years. Usually you have to work 5 out of the last 10 years. For individuals under 31 years old, the requirements are a little different since they have not been in the work force as long.
Under the federal Social Security Disability Act, "disability" means the "inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to last for a continuous period of not less than 12 months or result in death."

The Workbook described at
www.disabilitykey.com contains a step-by-step “How To” guide to assist you in documenting your illness/injury symptoms and their impact on your every day normal living activities.

Supplemental Security Income (SSI)

The Supplemental Security Income program is funded by the general revenues of the Federal Treasury and is intended to provide a minimum level of income to persons who are aged, disabled, or blind and demonstrate economic need. The SSI program is meant to supplement any income an individual might already have to ensure a certain level of income to meet basic living expenses. The dollar amount received in SSI on a monthly basis varies from person to person and is computed each month, taking into account an individual's current financial situation.
For an individual to be eligible for SSI they must be disabled, or blind, or aged and have little or no income and resources. A person must fit into one of the following categories: Disabled, Blind (20/200 or less in your better eye with glasses or a filed of vision less than 20 degrees), or Aged (refers to be 65 years of age or older).

To be eligible for SSI a person must meet an income as well as resource test. SSI resource limits are set by statue and a person's countable or real personal property, including cash, must not exceed the specified amount to qualify. The current resource limit is $ 2,000 for an individual and $3,000 for a couple. Income includes earned income (which refers to monthly gross earnings), and unearned income such as Social Security Disability Insurance (SSDI) or any other type of benefit or monetary support a person receives. A standardized formula, which takes into account earned and unearned income is used by SSA to compute the dollar amount of SSI cash benefit that a person qualifies for. This formula is applied during the initial eligibility determination and an individual must qualify for some dollar amount of SSI to meet the income test.

The specifics of qualifying for SSI are quite complicated.

The next time, we will talk about COBRA (and no, it is NOT a snake) OBRA, and their relationship to Medicare and/or another health insurance plan.

Tuesday, May 31, 2005

Disability Insurances - What are they?

(Social Security Disability Insurance)
(Supplemental Security Income)

OBRA Insurance

These are all of the traditional disability insurances. Now we will discuss what they are, and why you should care!

STD is an insurance that you are usually provided by your Employer. It is an Insurance plan that pays out a certain amount of money for a short period of time (normally, no longer than 6 months). There is usually a week of what is called "qualifying" time before the STD payment will kick in. Most folks can take sick leave, vacation time, paid time off, or some other sort of time for this qualifying time. This type of disability payment is for an illness or injury of a limited period of time. An STD payment ranges from a low amount that would equate to a state's Unemployment payment, to a maximum of about 66% of base pay. To know about the specifics of your plan, ask the appropriate people for a copy of your STD plan's Summary Plan Description.

LTD, or long term disability insurance payment usually results from a physical or mental illness that prevents an employee from performing the job that they occupied at the time the illness/injury occurred. To receive the disability benefits insurance payment, the plan participant must qualify, based on the particular plan requirements. There also is a qualifying period of time for LTD, just like for STD, only the average LTD qualifying period of time is usually 6 months. Again, like STD, the payment out of an LTD plan is plan-specific, and can range from a finite dollar amount to a percentage of base pay. Key issues to research in your LTD disability insurance plan include, but are not limited to: pre-existing conditions; "own occupation" vs "any occupation" timeframes; whether or not the monthly benefit payment is taxable or tax free; etc. (Normally, the rule of thumb is that if the company pays for the LTD plan premiums, the benefit is taxable upon receipt; if the covered person pays for the plan premiums, the benefit is tax free.) Again, for specifics about your LTD plan, check out your Summary Plan Description.

Tomorrow, I'll discuss SSDI, SSI, COBRA, and OBRA. If you need information immediately, please check out our website at: http://www.disabilitykey.com.

Pain in legs and feet

Today is Memorial Day, and as we give thanks to those who give of themselves to keep us safe, it is time to also discuss ways of helping those of us who are aging “feel better”. I don’t know about you, but the aging process sometimes results in aches and pains over and above what the doctors say we should feel at this point in our lives. AND, knowing that we only have about 15 minutes with the doctor, how best to get him/her to know what is going on? Also, what does the latest research show about managing pain now that Vioxx and Bextra have been taken off of the market?

Someone close to me sent me an email that I am adding to my blog so that as I answer one person, perhaps the information might help others, and trigger additional useful information from those of you with additional solutions.

Now for the questions:
“What are some effective ways to control common age related ailments? I have "issues" as they say with my lower back, cervical spine, knees and ankles. Most advice from doctors has been unhelpful at best, wrong at worst. The most valuable information has come from physical therapists, as most of my problems are mechanical. Whenever I see any knee Surgeon, all they want to do is operate, and I do not want that. Some suggestions, please?”

First of all, the better you can describe your symptoms and the SPECIFIC impact that the symptoms have on your normal daily activities, the better you will be able to communicate with your Doctors. For this I suggest something that I call a “Symptom Impairment Matrix”. It looks something like this.

NOTE: I haven't figured out how to import a chart into this format yet!

Part of Body (column #1)
How Impacted (column #2)
How Impact Impairs Normal Daily Living; How Currently Alleviate Pain (column #3)
Feet (goes in column #1)
Ø My feet are always cold; they always tingle like when they awaken from being asleep. Ø My feet often ache; the ankles, the toes, the arch all ache. (goes in column #2)
Ø The coldness of the feet I manage by wearing socks all of the time. Nothing appears to work for the tingles, and this symptom is like a dull headache that will not go away. It is distracting, at best, and makes me avoid walking, at the worst of times.Ø When the feet ache like this, it is usually in the afternoon, after I have been walking or standing for over an hour. I usually take OTC (Over The Counter) pain medicine, but this doesn’t seem to help much. When the pain is very bad, I need to sleep at night with pillows under my legs to see if that will help.
Legs (knees too) (goes in column #3)


ETC. As you can see, it is very important to be specific. It is impossible to be too detailed, and to list too much information. The better you can describe what is going on with you, the better your Doctor(s) can assist you.

Next, let us talk about pain medicine. Since I only described feet above, I’ll limit this example to pain medications that might alleviate these feet problems. They are, however, the same medications that might just help with the legs and knee pains. Note: This information is provided for information purposes only. Only your Doctor can determine if this, or any other medicine is appropriate for you. By providing information, we are only assisting you with options that can be discussed with your Doctor for appropriate care.

Antispastic analgesic (in trigeminal neuralgia)
Baclofen (BAK-loe-fen) is used to help relax certain muscles in your body. It relieves the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis or certain injuries to the spine. Baclofen does not cure these problems, but it may allow other treatment, such as physical therapy, to be more helpful in improving your condition.

Baclofen acts on the central nervous system (CNS) to produce its muscle relaxant effects. Its actions on the CNS may also cause some of the medicine's side effects. Baclofen may also be used to relieve other conditions as determined by your doctor.[1]

1.What is gabapentin (Neurontin)?
Gabapentin is an anticonvulsant that is chemically unrelated to any other anticonvulsant or mood regulating medication.
2. When was gabapentin approved for marketing in the USA and for what indications may it be promoted?
Gabapentin received final approval for marketing in the USA on 30 December 1993 and is labeled only for use as an anticonvulsant. It is also widely used to treat individuals suffering from many kinds of pain problems, tremors, restless legs syndrome, hot flashes associated with menopause, and various psychiatric disorders.
3. Is a generic version of gabapentin available?
Generic forms of gabapentin are available in the USA as the manufacturer no longer has patent protection.
4. How does gabapentin differ from other mood stabilizing drugs?
Gabapentin differs from other mood stabilizing drugs in two major ways:
1. Gabapentin is sometimes effectiveness for patients who have failed to respond to antidepressants or mood stabilizers;
2. Gabapentin's relatively benign side-effect profile.[2]
Neurontin has a growing multitude of medical studies showing it effective for off-label illnesses such as:
Reflex Sympathetic Dystrophy (RSD),
brain injury,
essential tremors,
sleep dysfunction,
Interstitial Cystitis,
refractory GU tract pain,
agitation secondary to dementia,
muscle cramps,
inflammatory injuries,
phantom limb pain
cocaine dependence
neuropathic pain,
Shoulder-Hand Syndrome,
hemifacial spasms,
peripheral neuropathy,
the pain, nystagmus, and spasticity of Multiple Sclerosis (MS),
trigeminal neuralgia,
prophylaxis and for acute migraines,
for pain secondary to epidural fibrosis,
acute and postherpetic neuralgia (Shingles),
acute pain from Herpes Simplex,
post-operative pain,
myofascial pain (MPS),
radiation myelopathy,
cancer pain
Restless Leg Syndrome (RLS),
Lou Gehrig's Disease (ALS) (but not its progression),
Periodic Leg Movement (PLM),
chronic pain not already mentioned here,
Bipolar Disorder,
social phobias,
somatiform pain with depression,
mood disorders,
both situational and clinical depression,
and it was concluded in one study that gabapentin (Neurontin) "represents a novel class of antihyperalgesic agents" (pain medications) and millions of us have proven that. [3]

Hopefully, this information will be of assistance. We welcome additional information and questions from others.

[1] Welcome to MedlinePlus, a goldmine of good health information from the world's largest medical library, the National Library of Medicine. Health professionals and consumers alike can depend on it for information that is authoritative and up to date. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 700 diseases and conditions.
[2] The information provided here and below about the various “off-label” illnesses treated by Neurontin has been gleaned from various websites.
[3] Any information provided should not be interpreted as a substitute for physician evaluation or treatment. Users are advised to seek the advice of a health care professional and practitioner. Users are advised to rely on their own training, education and experience.

Thursday, May 26, 2005


What are the odds?: (2005) in the next hour 194 people will be injured in car accidents, 57 homes will catch fire, 230 people will die, and 1,027 will become disabled.

Here are the latest disability trends that concern you.
Ø Today, we live harder, work harder and play harder than ever before. As a consequence, there has been a dramatic increase in disabling injuries and illnesses.
Ø In the past 25 years, the number of severely disabled people ages 17 to 44 has increased 400 percent. While the number of people with protection has also increased, most Americans still have a disability income protection gap.
Ø This is alarming when you consider in a year's time, chances are only one in 1,200 of you will need your fire insurance—generally considered a necessity for homeowners—but one in eight (8) of you will be sick, injured or killed.
Ø The risk of becoming disabled will continue to increase.

Aging is a main factor.
Ø Because of advanced trauma and cancer care, more people today survive illnesses and injuries that were deadly 20 years ago. In 1930, the average U.S. life expectancy was 61; today, it is 76; and by the year 2050, it will be 82. Today, there are 3.6 million Americans over age 65; by 2040, there will be 13.8 million.
Ø With Americans now living longer, age has and will continue to have a profound impact on disabilities. According to the National Association of Health Underwriters, there are 3.74 disabilities per 1,000 people ages 45 to 49. This increases nearly five times more with age, to 15.18 disabilities per 1,000 people ages 60 to 64.
Ø In addition, the traditional retirement age is moving up, and more people are likely to work part-time after retirement, thus increasing the risk of a disability later in their life.

Changing workforce
Ø More than 10.5 million people are starting their own businesses, consulting or working at home, according to the Bureau of Labor Statistics. And more women than ever are now working; many families today rely on two incomes. In the early 1900s, there were only 500,000 married women in the labor force. They represented just 4.5 percent of all married women. Today, there are about 39 million married women working outside the home (representing 60 percent of all married women), and 17 million of them have children under age six.
Ø With more women working and families relying on two incomes, the need for disability protection has become greater, especially since women are twice as likely to suffer a disabling illness than men. And with more people working out of their homes and earning substantial incomes, the need for more flexible, individualized protection is on the rise.

Increase in workplace disabilities
Ø Over the years, the causes of disabilities have changed in the workplace.
Ø Today, disabilities due to psychiatric conditions, severe back pains, Carpal Tunnel Syndrome, muscle/tissue disorders and Chronic Fatigue Syndrome are increasing dramatically. Among the most common long-term disabilities (those lasting longer than three years) are circulatory and heart conditions, back disorders, psychiatric conditions, general sickness and subjective pain.
Ø Common short-term disabilities (those lasting less than three years) include normal pregnancies as well as pregnancies with complications, injuries, muscular or skeletal problems, and psychiatric or substance abuse problems.

Disability Insurance

Disability Insurance

When you have a disability of any type, your time, energy, and emotions are all heightened as you begin the journey to learn all you can so that you can regain the best quality of life that you can, given your particular circumstances. And, if you are married, and/or if you have children, trying to communicate with them what is going on with you, as well as to your doctors, becomes a difficult chore also.

With all of this chaos in your life, the absolute last thing that you need to worry about is money! What if I can’t work any longer? How will the bills be paid?

Perhaps you are saying that you do not need any disability insurances. Consider the following.

Disability Statistics[1]
The odds of a person having at least one long term disability (LTD) that lasts three months or longer before that person reaches age 65.

DISABLED: (1999) According to the Disability Management Sourcebook, the number of folks between 17 and 44 with severe disabilities has increased 400 percent over the past 25 years. One in seven people will become disabled for five years or more before they reach 65.
ODDS, STATISTICS AND DISABILITIES: (1999) The chances of using your homeowners insurance are about 1 in 88. The odds of using your auto insurance at about 1 in 47. The chances of using your LTC insurance is about 2 in 5. One out of two women and one out of three men will spend some time in a nursing home. (Journal of the American Society of CLU, 1996) More than 12 million older Americans will require some form of long term care by 2020. (Health Insurance Association of America). 72% of residents in a nursing home are women 90% of nursing home residents are over the age of 65. 22% of the disabled population is under age 65. (Puget Sound Life Underwriters Journal 1996). Functionally disabled people between the ages of 18 and 64 represent 40% of Americans needing long term care services. (Life Insurance Selling 1995)

The likelihood of needing LTC (obviously) increases with age. In 1991, 29.2% if those age 45- 64 had a disability; 44.6% between 65 and 74 had a disability; 63.7% between the ages of 75 to 84. 15.3% and 41.5% respectively had a severe disability. (Employee Benefit Research Institute, 1995) 80% of disabled persons are cared for at home or in adult day care centers. 72% of caregivers are family or friends. (Puget Sound Underwriters Journal). The cost of home care can run from $4.25 to over $200 daily depending on the level of skill needed (SF Chronicle, 1995). Caring for each Alzheimers patient will cost more than $213,000- on top of other medical expenses- over the remaining five years of their lives. (American Journal of Public Health, 1994). Over 99% of nursing home care is either custodial or intermediate care, not skilled care, and is not covered by Medicare or Medicare supplements (Journal of the American Society of CLU's, 1996).

Reasons People Take STD and LTD
Leading the list of Top 5 causes of short-term disability (STD) workplace absence for 2001 was pregnancy (normal), followed by complications from pregnancy, injuries (excluding back), back conditions and digestive/intestinal conditions. The causes of claims and the percentage received for each cause were as follows:
LTD - 13 percent – Cancer, 12 percent – Complications from Pregnancy, 11 percent – Back, 9 percent – Cardiovascular, 5 percent – Depression
(2003) every year 12% of the adult U.S. population suffers a long-term disability. One out of every seven workers will suffer a five-year or longer period of disability before age 65, and if you’re 35 now, your chances of experiencing a three-month or longer disability before you reach age 65 are 50%. If you’re 45, the figure is 44%
STD - 20 percent – Pregnancy (Normal), 9 percent – Pregnancy (Complications), 9 percent – Injuries (Excluding Back), 8 percent – Back, 8 percent – Digestive/Intestinal

The primary sources of disability insurance are STD and LTD. It is important to see if your company offers these insurances. If they do, make sure that you are covered. If they don’t, you can get personal STD and LTD. By visiting the following website, you can get more information about disability insurances.
[1] The following information comes from EFMoody.

Tuesday, May 24, 2005


HEAT!! One of the reasons why some of us with neurological "conditions" (AKA = "also known as" disability) live in the northern climates is because we HATE HEAT!!! Help in documenting how heat affects you can be found by checking out www.disabilitykey.com.

I have Multiple Sclerosis; some of my friends suffer from other neurological diseases, and when it is cool (we love 60 degrees to 70 degree temperatures, or LOWER) and raining, we are most happy! When I was still able to go into an office for 2-4 hours per day, I would set the thermostat at 60 degrees, and I was very happy! My co-workers, even in the heat of the summer, would come into the office while I was there, and imediately put on a fleece jacket! They, of course, would prefer to set the thermostat at 70 degrees, and did so when I was not around.

So, if heat is a concern of yours, how can we manage around it? I'd love to hear your suggestions. Here are some of mine:

  1. First of all, I have a basement appartment, and keep my windows open during the day, and a crack at nite. If it is hot outside, I keep the windows wide open at night, and set up a fan to move the cooler air into the room. And, as I get up 6 - 7 times each nite to to to the bathroom, I close the windows at about 5 am, thus trapping cool air in the room.
  2. Cool showers, of course, work wonders.
  3. Lots of liquids are important. Also, cut down on caffine in hot weather.
  4. I have a cool washcloth that I use on my arms and forehead. In this way, I am cooled as the bathed places dry.
  5. Keep a fan blowing on you, at low levels.
  6. Wear cool, loose clothing.
  7. Get what is called a "cooling jacket or vest". It is sold in many places. It is a jacket that has pockets into which you place jell-like tubes that you freeze. This cools your trunk, and it helps cooling you.
  8. Do your exercises in the early mornings or late evenings, when it is cooler. And, take a cool shower afterwords to cool down.
  9. Give yourself permission to decrease your activity levels during the heat. It helps!

What are your suggestions? Those of us who deal with the problems of heat are always looking for suggestions.

Again, for more information about handling your disability, please visit www.disabilitykey.com.

Also, if you have additional questions about managing the affects of heat, please add questions to this blog, and we will answer them.

Sunday, May 22, 2005

Pain )-:


Even the word "pain" hurts to those of us who endure levels of pain each day. Pain management is what the doctors tell us to do. This sounds great in theory, but what does it mean, and how does one go about doing it? These are excellent questions. It probably sounds "logical", but the better you are at describing your pain to others, the better you can get help in managing pain. And, pain management is the key!

The best way to document and comunicate pain is to use what I call a "pain" scale. I set this up in what I call a "matrix", where I have a chart with four columns as follows: The left column is for pain "level", from "0" being "NO PAIN" (right, like that's gonna happen!) and "10" being so painful that NOTHING YOU DO seems to decrease the pain level.

In the next column, you describe the pain at different levels. I use the following: 0 = No pain; 02 = low levels of pain, an Over the Counter (OTC) remedy can get rid of it; 04 = moderate pain, need double the strength of the OTC remedy to dull the pain; 06 = heavy moderate pain, need double the strength of OTC remedy, but the pain isn't dulled, and activities are curtailed (decreased); 08 = heavy pain, need something stronger than an OTC remedy, and one must sit/lie still; and, finally, level 10.

The next column is the most important one, where you describe specifically what the pain feels like, and use many VERY SPECIFIC examples of how this specific level of pain impacts your "normal daily living activities". I cannot stress how important it is to be as specific, and as complete with your examples as you can be. Also, you need to "guesstimate" the % of time a day/week that you "routinely" have this pain.

Here are some examples that I use:

  • 02 - The low levels of pain are primarily headaches and backaches. I can take an OTC remedy, and rest for about 30 minutes, and the pain goes away. This level of pain comes about 2X a week, and only lasts for the 30 minutes until the OTC remedy kicks in. This level of pain does not keep me from doing my daily activities. BUT, I need to get on this level of pain immediately, or it will increase in level if not addressed and removed.

  • 04 - This level of pain occurs in my hands, arms, legs, feet, and head. It is like the muscles are hurting, and the joints hurt. This level gets my attention; I take double the advised level of OTC remedy, and get some hot tea, and rest lying down. This level usually takes about an hour to "manage", and I have to stop whatever I am doing to lie down until I get it under control. This level occurs about 10% of the time, every other day, usually in the evening. This level makes me depressed, and when depressed, the level of pain often increases to the 08 level.

  • 08 - I usually go straight from 04 to 08, skipping the 06 level. This level is incapacitating. It feels like the worst flu you have ever had, where EVERY muscle and joint in my body hurts! Even my teeth and scalp hurt. Light hurts my eyes; sound hurts my ears; movement makes me nauseous. I take triple the OTC remedy, and a hot shower. I have a stool in the shower where I can sit and let the hot water shower down on me until I run out of hot water (I do this after I take the meds, and try to stay in the shower until I feel the pain beginning to receed). When out of the shower, I have room temperature ginger ale (hot or cold liquids hurt my head), and lie down with soft music - no words; with a cool washcloth over my eyes in a darkened room. This level of pain occurs 2 or 3 times a week, and lasts for about 20 - 30% of the day. I cannot function in any activity at this level of pain. When the meds kick in, the pain is only reduced to the 04 or 02 level.

  • 10 - at this level, no OTC remedy helps; the shower doesn't help; nothing helps; the pain is just reduced to the 08 level. Need greater help than an OTC remedy. This level occurs about one time each week, and literally knocks me out.

Now for the last column, and, this one is very important for long term pain management. In this column, you document what, SPECIFICALLY you were doing just before this level of pain was triggered! This will help both you and your Doctor determine what will help you.

For me, the doctor really noticed the comment about depression linked with pain, and the comments about taking "above recommended" levels of an OTC remedy. He prescribed for me an anti-depressant, and a pain medication in lieu of the OTC remedy. These meds, in conjunction with the meds for joint pain and for the tingling pains, allows for me to regain some of the normal daily living activities.

Good luck for you in documenting your pain levels!

If you have additional descriptions about levels of pain that you would like to share, please feel free to do so. Also, if you have additional questions about pain, feel free to ask them, and we will answer them.

Saturday, May 21, 2005


Have you ever experienced fatigue so great that just the THOUGHT of getting out of bed is almost too much to bear? Now, try joining that fatigue with insomnia, and you have the stuff that drives folks crazy!

Welcome to the world of those of us with neurological diseases. Mine is Multiple Sclerosis. As I type this, it is after 4:00pm, and I just had breakfast! No, I am not a vampire, and I went to bed at Midnight; I just tossed and turned for over 6 hours, trying to get to sleep!

Fatigue - the thought of paying bills; the thought of just getting dressed; taking a shower and washing hair tires me out for an entire day. How does one learn to manage these symptoms? This symptom management, sharing ideas with others in similar situations, is what this blog is all about.

Each different blog will have its own title, and will cover different "situations", thoughts, and other ideas, for us all. For, the more we know, the better off we are in getting out of each day, the qualify of life that we all want.

So, fatigue. How to manage it. First of all, learn your own body's needs. If you have to sleep all day, and are up all night, so be it! Don't fight it. Fighting it just makes the insomnia worse. What I have found is that after one day like this, I'm so tired the next night that I can get a "more normal" sleep cycle.

Next, I've found that if you "listen" to your body, you can figure out why your body does't want to sleep. In my case, the muscles and joints ache. By keeping a diary, like this, and sharing it with my Doctors, they have been able to get me prescriptions to help. For muscle and joint aches, I swear by Baclofen!!!. Without my daily doses of baclofen, even my teeth ache.

For the tingles and numbness - the feelings like ants are crawling on your skin - Neurontin (Gabapentin is the generic brand) is great.

Let's face it; giving in to fatigue is not an option. Learning how to better manage fatigue's symptoms will allow you to live a better life.

Now that I've got this out of my system, I'll go take a shower and wash my hair. More later!

If you have additional comments and/or questions about Fatigue, please add to this blog.

Qualifying for Social Security Disability Insurance (SSDI)

Greetings! My name is Carolyn Magura, and my website is www.disabilitykey.com. I have been on Long Term Disability (LTD) since 2001, and on Social Security disability Insurance (SSDI) since about 2002. While most folks who apply for SSDI are turned down about 60% of the time in their first try, and about 80% in their second try, I was the first person in my state to qualify for coverage the first time around, in under 30 days!!!

What, you say, is my illness/disease? Good question. It could have been anything, for the process I use, and am committed to helping others succeed with, works with ANY disease/illness. Mine is Multiple Sclerosis. I have had MS for over 45 years - misdiagnosed for most of those years - and am finally in what is called the secondary progressive stage.

This Blog is my way of sharing my thoughts, feelings and ideas with others who are travelling similar paths. I'd love to hear your opinions and thoughts too. For help with your situation, go to the website: www.disabilitykey.com.