Linda hosts a monthly chat at MGnet held the first Monday of each month. See the Calendar for the time in your area. Linda is an Employment Disability Mediator Specializing in Employment Disability, Human Resource, and Organizational Conflict Management. The following article is the information provided at her first chat meeting.

The best plans include backup plans. One key challenge is the "hidden disability" aspect of MG, and the fluctuating endurance issues day-to-day, month-to-month. Evaluating the spectrum of one's ability to function means defining what you can do on the worst days vs. what you can do on the best days. Then, constructing plans regarding work, the disability, and how to maintain medical benefits so that the spectrum is covered.

For instance, if you are partially disabled and on the fence about whether returning to work will cause your MG to worsen, this is an opportunity to pause and gain understanding about the different benefit programs, which could serve as a safety net, if needed.

Filing right away for Social Security Disability means getting a jump on the two-year-wait for benefits to kick in. It's difficult for outsiders unfamiliar with MG to comprehend the severity of the health problems if they only see you on a "good" day. It also takes time to get the appropriate medical documentation and reviews completed. Advocates for Social Security Disability are available, along with attorneys who specialize in assisting applicants through the process. Appeal processes also exist for those who are declined.

When you become disabled, the medical documentation needs to be current. It's more likely to support the claim if the problems you are having are clearly stated in functional terms, by the medical specialists who treat you. If you wait to file to see how you improve, resting at home over months and months, your medical records might reflect improvement, but do not factor stress and endurance factors that can sometimes worsen MG. Improvement may or may not hold. To streamline the process towards qualifying, the records must show that you cannot move your arms more than "X" amount, can't read "X" amount (lift, walk, swallow or chew for more than "X" amount). If the disability fits the ranges of the guidelines, then the disability is significant enough to prevent you from working. Be very specific in answering the questions you are given.

With appropriate medical treatment, lifestyle modifications, and accommodations in the work place, the initial return to work is at best an experiment. If the medical condition worsens upon return to work, it often means returning to short-term disability and starting all over on the two-year waiting period for SSDI. Quality of life, the purpose for our lives, individual tolerances, coping mechanisms, and the type of work we do, vary dramatically from person to person. For some people, this is a quick decision-making process. For others, the diagnosis and decisions necessary seem so uncertain.

SSDI, Social Security Disability (federal program), once approved, is about a two-year waiting period before Medicare kicks in. What happens to medical coverage in the interim must be determined, including how the premiums will be covered if the income to support it runs out. (Medicare can currently be rolled over to an HMO Kaiser plan, for a monthly fee, and offers limited prescription coverage of $2000.00 maximum per year.)

SSI is Social Security Income. Those with assets less than $4000.00, and under about $1300.00 income, can receive assistance with hospitalization costs. State programs (called Medicaid, in California) are designed for these folks with very limited incomes. If you qualify, there is no waiting period to receive benefits.

The question of whether to apply to SSI or SSDI has to do with your present and future income, whether you've paid into SSDI long enough, and total assets. You can call the Social Security Administration at 800-772-1213 to obtain more information, including a print out of your projected monthly benefit amount.

Issues surrounding being approved with a neurological (hidden disability issue), are addressed well by Dr. Richard Bruno at the Post Polio Institute's web site, detailing the Social Security Disability Insurance process (http://www.postpolioinfo.com/PostPolio/ssdi_new1.html). Though the diagnosis is different, many of the challenges are similar. Dr. Bruno's expertise addresses ways to effectively manage the social security application process in partnership with your medical provider.

Social Security has brochures available through an automated phone system.

The key is to make sure the medical documentation graphically and adequately states the functional restrictions and limitations of the disability. (How much weight can you carry? How far can you walk? How long can you sit, read, and breathe before taking a break from the activity? How long does it take to recover?) Unfortunately, doctors may make notes in their records "patient is doing fine." Relative to what they know of the patient's medical condition, it does not communicate what the administrative judge needs to see in order to know you are unable to function at work. The doctor will need to describe adequately the functional problems you are having because of the medical condition and how frequent the problems are, in addition to severity. The bottom line to qualifying is that the records my show that you cannot move your arms more than "X" amount, can't read "X" amount, lift, walk, and swallow, chew, more than "X" amount. If the disability fits the ranges of the guidelines, then it will be understood that the disability is in fact disabling you from working.

When calling Social Security to apply for these programs, an intake appointment will be scheduled with a counselor. For those medically unable to travel to your local Social Security Office, it is possible to request an intake to be done over the phone, for medical reasons. They will discuss the possible programs you might qualify for, and help you understand the steps of the application process.

For SSDI, it takes months for this process. Doctors need time, copying records takes time, and then the review of these documents can involve multiple levels. 4-6 months isn't uncommon before payments can begin. Interim short-term and long-term plans need to be constructed for income and health benefits. It's usually not beneficial to wait to begin the filing process, if the medical condition is serious and expected to continue, and if it's unstable.

While the safety net goes up, you can also begin working on returning to work. If returning to the current job is medically out of the question, then the Ticket-to-Work program might be an option. By working with a State Vocational Rehabilitation Counselor, a new career path (part-time or full-time) can be designed for less physically taxing occupation, without loosing the safety net of Social Security and Medicare. It's an opportunity to try out the employment situation with the disability for 9 months to a year before your case is re-reviewed for the purpose of discontinuing benefits. If you earn enough income, and don't need the benefit, then Social Security payments will stop. However, if you have a setback months or years later, Social Security Disability payments can restart, right away (providing you were previously approved). You won't have to wait through another qualifying period to receive benefits again.

Job retraining is available through various options, including a Long-Term Disability provider (if you've paid into a plan, and qualify), or by opening a case with your State Vocational Rehabilitation Department. There are many private options available, too. Some people use career coaches, mentors and the services of advocacy centers (such as Protection and Advocacy, the EEOC, college counseling offices, services of non-profit foundations such as the Muscular Dystrophy Association, and disability mediation centers).

The trick is to realistically assess the background and skills, one's aptitude, long-term and short-term market conditions, health limitations, while identifying the possible solutions. What tools and jobs are out there for you? What types of accommodations are commonly used, and needed? Does the type of work, the culture, and resources of the company reasonably allow for these accommodations? What skills are lacking? What are your rights? How to assert yourself?

A Ticket to Work can be requested by Social Security recipients. The Social Security Administration will explain how the program works, and what happens to benefits, and when. Vendors are hired by the state to provide training and support services for clients utilizing the program.

There are many other options in one's quest to work, and those seeking answers to the question, "Now what do with my life, after MG?" In the next session, we will discuss the Ticket-to-Work program, and other return-to-work options.

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