Muscular dystrophy (MD) is a group of nine disorders that cause deterioration in the muscular system. Some types of MD are mild and others are very severe. Severe forms of MD can result in cognitive impairments, the inability to walk, and problems breathing, seeing, or speaking.
The most severe types of MD usually appear in childhood. Children who are severely impaired because of MD and meet the financial requirements for SSI may qualify for SSI.
To qualify medically, a child must have a disability that severely limits his ability to function and is expected to last at least twelve months. Social Security has a listing of impairments, found in Social Security's "blue book," that are presumed to be severe enough to qualify for SSI. The blue book's "listing" that applies to muscular dystrophy in children is Listing 111.06 (Motor dysfunction due to any neurological disorder). This listing was updated in 2017.
To meet Social Security's listing for muscular dystrophy, your child must have continuing, serious problems with at least two of his extremities (arms and legs) that interfere with his daily activities and cause an extreme limitation in your child's ability to stand up from a seated position, balance while standing or walking, or use his or her arms for things like writing, eating, picking up things, or reaching for things.
Your child must have impairments in at least two extremities. So, if your child has problems in both legs, both arms, or one leg and one arm, he satisfies that part of the listing. If your child only has an impairment in one limb, then he will not satisfy the listing.
Your child does not need to have entirely lost the use of two of his limbs to satisfy the listing. Social Security requires that two extremities have persistent "disorganization of motor function." Your child can satisfy this part of the listing if he experiences weakness, muscle spasms, lack of coordination, tremors, involuntary movements, or the loss of sensation in two extremities.
Social Security will look at how your child's MD affects his functioning as compared to other children his age without MD. For example, if your child is two years old, Social Security will not expect him 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.
Charcot-Marie-Tooth disease was once classified as a type of muscular dystrophy, but it now stands on its own and is assessed under the disability listing for peripheral neuropathies. (For more information, see Nolo's article on Charcot-Marie-Tooth disease.)
Your child will need medical documentation of a neurological impairment that is causing his muscle problems. If your child's doctor has diagnosed MD, then Social Security will look for test results in his medical file to back up the diagnosis. Tests might include blood tests or biopsies of muscle tissue. Your child's medical file should also contain documentation of the kind of impairment your child has and how it affects his functioning. For example, if your child cannot walk because he has weakness and muscle spasms in his legs, then his medical records should document that.
If your child has MD and has significant difficulty walking, balancing, standing from a seated position, or using his hands or arms, then he will be eligible to start receiving SSI immediately under a program that Social Security calls Presumptive Disability. Under the program, Social Security will pay SSI benefits for up to six months while your child's disability application is being decided. If Social Security later decides that your child does not meet the disability standard, you will not have to pay back the PD benefits.