Filing for Disability Benefits for Muscular Dystrophy

Muscular dystrophy (MD) is 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 other parts of your body, too, such as your eyes, mouth, heart, and lungs.

Some with MD might experience difficulty swallowing and breathing. And some will have cognitive impairments.

Although there's no cure, medications and therapy can often help with your MD symptoms. The prognosis depends on the type of MD you have.

Can I Get Disability for My Muscular Dystrophy?

If your muscular dystrophy symptoms meet the requirements of the Social Security Administration's (SSA) disability listing for MD (listing 11.13), you'll be automatically approved for disability. There are two alternate sets of requirements in Social Security's listing for muscular dystrophy.

Meeting the Muscular Dystrophy Listing for Physical Issues

You'll meet the listing requirements if your muscular dystrophy causes severe interference with your ability to use your muscles in two of your extremities (arms or legs). The limitation must cause chronic difficulty with your ability to do one of the following:

• stand up from a seated position
• balance while standing or walking, or
• use your arms effectively.

Those with MD often have difficulty using their muscles to stand, walk, or lift items, reach, type, or perform activities of daily living like cooking, cleaning, getting dressed, or shopping. These limitations 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 (like vision problems).

Meeting the MD Listing for Physical and Mental Limitations Combined

If your muscular dystrophy causes cognitive, communicative, or social problems, you might qualify for disability under the second set of listing requirements. To do so, you must have "marked" (more than moderate, less than extreme) physical problems along with a marked limitation in any one of the following:

• thinking, remembering, and following instructions
• interacting with others
• finishing tasks at a reasonable speed, or
• regulating your motions, taking care of yourself, and adapting to changes.

Medical Evidence Needed to Meet the MD Listing

To prove that your MD meets the listing requirements above, you must provide Social Security with medical records that relate to the diagnosis and treatment of your disease. Examples of relevant records include the following:

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

The more information you provide to Social Security at the beginning of the application process, the more quickly the SSA will approve your disability benefits.

What if My Muscular Dystrophy Doesn't Meet the Listing?

Even if Social Security doesn't find that your MD meets the listing requirements for muscular dystrophy, you can still win your disability claim. If you're an adult, Social Security will decide whether you can still do your old job despite your MD, and if not, whether there's any other work you can still do. If Social Security determines there's no other work you can do in light of your symptoms, the SSA will approve your claim.

To determine whether there is work you could perform, Social Security will prepare a residual functional capacity (RFC) assessment. An RFC is a detailed report describing the limits 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 you from performing many activities of daily living and light work. With these symptoms, your RFC would reflect significant restrictions on lifting, carrying, pushing, or pulling even minimal weight. This limitation would prevent you from performing many jobs.

MD can also cause significant respiratory problems. If you've developed difficulty breathing as a result of your MD, your RFC would probably state that you can't work in environments that expose you to any of the following:

• extreme temperatures
• dust
• pollution, or
• excessive moisture.

This restriction would prevent you from working in most industrial or agricultural positions and would rule out more jobs.

You should ask your doctor to prepare an RFC, or medical source statement, for you. It's essential 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. Social Security will give an RFC form from your doctor little weight without this objective evidence to back it up.

Once Social Security has completed your RFC, the SSA will use a vocational consultant to determine if there's any type of work that you can do with your skill set and education. Learn more about how Social Security uses its RFC and your doctor's RFC to decide whether you can still work.

Can My Child With MD Qualify for Disability Benefits?

The most severe types of muscular dystrophy are generally those that appear in childhood, including Duchenne muscular dystrophy (DMD). DMD is the most common form of childhood MD and causes progressive weakness and muscle wasting (atrophy). Children with DMD can develop serious complications, such as:

• trouble breathing
• difficulty swallowing
• bone thinning
• scoliosis (curving of the spine), and
• cognitive and behavioral impairments.

Children whose MD or DMD causes severe impairments can qualify for SSI disability benefits if their families meet the financial requirements. Your income and resources will affect your child's eligibility for SSI. Learn more about how Social Security determines a child's financial eligibility for SSI.

To qualify medically for SSI, your child's ability to function must be severely limited by MD. Like with adult disability claims, your child's limitations must be expected to last at least a year. And your child can qualify automatically by meeting the requirements of a listing.

Meeting the Childhood Listing for Muscular Dystrophy

Social Security has a listing that applies to muscular dystrophy in children (listing 111.13). The requirements of the children's MD listing are similar to those for an adult. To meet the listing, your child must have serious problems with at least two extremities (both legs, both arms, or one leg and one arm) that cause extreme difficulty with the following:

• standing up from a seated position
• balancing while standing or walking, or
• using both arms for things like:
• writing
• eating
• picking up things, or
• reaching for things.

Your child doesn't need to have entirely lost the use of two limbs to satisfy the listing. Your child's impairment can satisfy this part of the listing if it causes extreme weakness, muscle spasms, lack of coordination, tremors, involuntary movements, or the loss of sensation in two extremities. Social Security will consider your child's limitations to be extreme if they have only met the developmental milestones for children half of their chronological age.

Unlike the adult MD listing, a child whose MD has caused both physical and mental impairments will be evaluated under the rules used to determine whether someone's condition is "equal in severity" to the listings.

Functional Equivalence to the Childhood Listings

Functional equivalence means that your child's physical and mental limitations affect their daily functioning enough that the impairments equal the severity of the listings. To functionally equal the listings, your child's MD must cause "marked" limitations in two or an "extreme" limitation in one of the following domains of functioning:

• acquiring and using information
• attending and completing tasks
• interacting and relating with others
• moving about and manipulating objects
• caring for self, and
• overall health and physical well-being.

Social Security will look at how MD affects your child's functioning as compared to other children the same age who don't have MD. For example, Social Security won't expect a four-year-old child to be able to write. Instead, Social Security will expect your child's doctor to evaluate fine motor skills like picking up toys and food.

(Learn more about how Social Security decides if your child's impairments functionally equal the listings.)

Getting Disability Benefits for MD Right Away

An adult or child who has muscular dystrophy and significant physical difficulties (like those in the listings above) will be eligible to start receiving SSI disability immediately under a program called "presumptive disability." You must have applied for SSI benefits to be eligible for PD. (Adults who have only applied for SSDI can't get these immediate benefits.)

Under the presumptive disability program, Social Security will pay SSI benefits for up to six months while your disability application (or your child's application) is being decided. If Social Security later denies your disability benefits (or your child's), you won't have to pay back the benefits you received through the PD program.

Basic Disability Requirements

In addition to the medical requirements, you must meet Social Security's legal and financial requirements to be approved for disability. You can't earn more than about $1,500 per month from working. Also, your MD must prevent you from earning that amount for at least 12 months (or be expected to do so).

On top of that, each of the two disability programs run by Social Security has its own eligibility requirements.

SSDI Non-Medical Requirements

To be eligible for SSDI (Social Security disability insurance), you must have a significant work history with employers who paid taxes to Social Security (FICA or self-employment tax). For more information, see our section on SSDI.

SSI Non-Medical Requirements

SSI (Supplemental Security Income) is a needs-based disability benefit available to people who haven't worked enough to be eligible for SSDI, including children. SSI has both income and asset limits. To learn more about qualifying, see our section on SSI.

How to Apply for Disability Benefits Based on MD

The disability application process varies depending on whether you're applying for benefits for a child or an adult.

You can apply for SSDI or SSI disability benefits for an adult using any of the following avenues:

• fill out an online application (most adults applying for SSI can now use this method)
• call Social Security at 800-772-1213 (TTY 800-325-0778) to apply by phone, or
• apply in person at your local Social Security office (make an appointment to avoid long wait times).

Applying for SSI for a child is a two-step process. First, you'll need to let Social Security know that you want to file your child's application. Then, you'll need to work with a Social Security representative to complete and submit the application.

You can notify Social Security that you need to file a child's application by:

• filling out the online appointment request
• calling Social Security at the above number
• contacting your local SSA field office, or
• completing a Child Disability Report (which takes about an hour).

Once you submit the online appointment request or the Child Disability Report, Social Security will contact you to finish the application process.

Learn more about getting disability benefits for a child.

_{Updated April 29, 2024}