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
process.

Click Here To Download Now

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.

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

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:

http://www.mayoclinic.com/health/symptom-checker/DS00671


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!!

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.

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.

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.

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

BENEFIT ELIGIBILITY SCREENING TOOL (BEST)


https://s044a90.ssa.gov/apps12/best/benefits/

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.

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.

http://nrcpicker.com/Default.aspx?DN=112,22,2,1,Documents

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.

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.

http://policy.ssa.gov/poms.NSF/lnx/0424510050

http://policy.ssa.gov/poms.NSF/lnx/0424510055

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

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.

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.

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.

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.)
Presentation
Job Negotiation and Customized Employment

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

http://www.t-tap.org/training/onlineseminars/pam/pamseminar.htm

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.

PLEASE STAY TUNED!

"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."

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!

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!

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.

SERIOUS BARRIERS

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.


FIVE-YEAR GOALS; IMPACT OF AWARD ON GOAL ACHIEVEMENT

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.

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.......

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, to