Filing for Disability Benefits for Muscular Dystrophy

Whether you can get disability benefits for MD depends on how the MD is restricting your activities.

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Muscular dystrophy (MD) is a term used to define a group of genetic muscle diseases that cause the muscles to suffer irreversible damage. Most people with MD eventually become confined to a wheelchair and often experience muscular contracture, a condition that causes the limbs to curl inward. MD can affect the eyes, mouth, heart, and lungs (which causes sufferers to experience difficulty swallowing and breathing), and some people with MD also have mental impairments.

Although there is no cure, medications and therapy can be used to help with some symptom of MD. The prognosis depends on the type of MD the individual suffers from.

Can I Get Disability for My Muscular Dystrophy?

If the symptoms of your muscular dystrophy meet the requirements of the Social Security Administration’s (SSA) disability listing for MD, you will be automatically approved for disability. The requirements in SSA’s listing are that you have severe and ongoing “disorganization” of your ability to use your muscles in two of your extremities (arms or legs) that causes chronic difficulty with your ability either to walk or to use your body to perform gross and dexterous movements.

Disorganization

Disorganization of your muscle function generally refers to difficulty using your muscles to perform activities of daily living like cooking, cleaning, getting dressed, shopping, or taking care of your personal hygiene. This can result from any of the following:

  • ataxia (lack of muscle coordination)
  • paralysis (complete inability to use a muscle)
  • paresis (partial paralysis)
  • tremors (involuntary muscle movement), and
  • sensory disturbances.

Gross and dexterous movements

Gross motor movements involve your large muscle groups and refer to activities such as reaching, lifting, crawling, running, and jumping. Dexterous motor movements involve the small muscles in your hands and fingers and refer to activities like holding a pen, counting change, typing, tying your shoe, or buttoning your clothes.

In order to prove that your MD meets the listing requirements, you must provide the SSA with medical records that relate to the diagnosis and treatment of your disease. Examples of relevant records are:

  • muscle biopsies
  • nerve conduction studies
  • DNA or blood enzyme tests
  • physician notes and reports
  • results from MRIs, CT scans, and X-rays
  • medication lists and a description of any side effects, and
  • reports or records from any physical therapy you have undergone for treatment of your MD.

The more information you provide to the SSA at the beginning of the application process, the more quickly you will be approved.

What if My MD Doesn’t Meet the Listing?

Even if the SSA doesn't find that your MD meets the listing requirements for muscular dystrophy, you can still win your claim for disability. At this point the SSA will decide whether it thinks you can still do your old job despite your MD, and if not, whether there is any other work you can still do. If the SSA determines there is no other work you can do in light of your symptoms, your claim will be approved.

To determine if there is other work you could perform, the SSA will prepare a residual functional capacity assessment (RFC). An RFC is a detailed report that describes what limits you have on your ability to perform work-related activities in light of your documented symptoms. For example, some forms of MD can cause severe weakening of the pelvic, back, and shoulder muscles, yet doesn’t entirely prevent the sufferer from performing activities of daily living and light work. An RFC for a person with these symptoms would reflect significant restrictions on lifting, carrying, pushing, or pulling even minimal weight. This limitation would prevent a person from performing many jobs.

MD can also cause significant respiratory problems. If you have developed difficulty breathing as result of your MD, your RFC would probably state that you are unable to work in environments that expose you to extreme temperatures, dust, pollution, or excessive moisture. This restriction would prevent you from working in most industrial or agricultural positions; this would eliminate more jobs.

You should ask your doctor to prepare an RFC, or medical source statement, for you. It is important, however, that your doctor give a detailed opinion about your ability to work and that it be based on objective symptoms and limitations documented in your medical records; otherwise, the SSA will give the RFC little weight.

Once it has completed your RFC, the SSA will use a vocational analyst to determine if there are remaining jobs that you can do with your skills set and education.For more information on how the SSA will use its own RFC and your doctor's RFC to decide whether there are any remaining jobs you can do, see our section on RFCs.

Basic Disability Requirements

In addition to the medical requirements, in order to be approved for disability you cannot earn more than $1,070 per month from working. Also, your MD must prevent you from earning that amount for at least 12 months. In addition, each of the two disability programs run by Social Security has its own eligibility requirements:

SSDI. SSDI is available to people who have a significant work history with employers who paid taxes to the SSA. For more information, see our section on SSDI.

SSI. SSI is a need-based disability benefit available to people who have not worked enough to be eligible for SSDI. SSI has both income and asset limits. To learn more about qualifying, see our section on SSI.

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