The severity of your child’s muscular dystrophy disability determines whether SSI disability benefits will be granted. The most severe forms of the disease do occur in children. MD is actually a collection of nine disorders, all of which cause muscle deterioration. Some of these nine can be very mild, but other forms can be severe, causing breathing, speaking and vision problems, as well as inability to walk and cognitive impairments.
Children with severe MD will usually meet the SSI disability requirement. The child must have severely limited function and mobility. The Social Security Administration (SSA) publishes a disability guideline called the “Blue Book” that lists qualifying conditions. For children, SSA updated the listing in 2017 to include “motor dysfunction due to any neurological disorder” as a qualifying condition.
Specifically, the guideline states that children must have serious problems in at least two extremities (arms or legs). People with MD usually have difficulty with muscle coordination. There must be evidence of extreme limitation, meaning the child cannot sit, stand or walk easily on his own. Other impairments include inability to write, eat or pick things up. SSA is looking for “disorganized motor function” characterized by tremors and spasms, involuntary movements, complete or partial paralysis, weakness and lack of coordination (ataxia).
Some forms of MD are accompanied by cognitive issues, where the child has trouble thinking, remembering, following instructions, regulating emotions or interacting with others. Children may be able to qualify under this second set of Blue Book guidelines if they don’t qualify for the physical impairments.
SSA will compare your child’s function with that of a same-age child without MD, for both the physical and cognitive impairments.
SSA has a presumptive disability program, and if your child’s MD is severe enough, you will immediately start receiving SSI benefits for up to six months while the SSA fully reviews your muscular dystrophy disability application. If SSA eventually decides that the child does not qualify, you don’t have to pay back any SSI benefits already paid, but you won’t receive any future SSI benefits either.
It is important to have detailed medical documentation from the pediatrician. There must be a diagnosis report that diagnoses a form of MD. SSA will also need test results that back up that diagnosis. The doctor needs to make lots of medical notes regarding how the MD affects your child’s function, and how that impaired function limits your child’s basic ability to accomplish daily tasks.