If you have a child with Duchenne or Becker muscular dystrophy, you may be eligible to receive funds from the government to help with the burden of expenses brought on by day to day life with muscular dystrophy. Social Security Disability benefits, in the form of Supplemental Security Income (SSI), can help ease the financial stresses of raising a child with this disability so that you can focus on the important things in life, such as caring for and enjoying time with your child. 

In 1997, a diagnosis of muscular dystrophy wasn’t something my wife and I expected. No one in either of our families had the disorder.  It was a difficult time as we changed the plans we’d made for our sons and learned about appropriate care for them and how to make sure they received it. 

We talked to the parents we met who told us Matthew and Patrick might be eligible for state and federal benefits. These programs included state insurance, respite and disability benefits.  Finding what was available and how to apply was confusing as many programs vary by state and the process isn’t always clear. It still can be confusing, so when information is made available to help families, I want to promote those efforts. 

Parent Project Muscular Dystrophy was contacted by another organization that put together a guide (PDF download) I think is useful in helping families apply for Social Security Benefits. The Social Security Administration provides financial support to eligible children with disabilities, yet many people are unaware of the program or how to apply for benefits.  Social Security Disability benefits for children are based on the child’s disability and their family’s income. The application process is made easier when you are prepared and have all necessary medical and income information ready. 

The guide describes the program, provides contact information to make an appointment to apply for benefits and lists the information you will need to complete the application. Being prepared will help prevent delaying the application process and learning if your child qualifies. 

Not all children will qualify for benefits, yet you still should consider going through the application process. Meeting the Social Security definition for being disabled is often used to determine eligibility for other state insurance and benefit programs. To learn more about what programs are available, contact the person in your local Department of Human and Family Services who is responsible for children’s benefit programs. 

I hope you find this guide useful and that it helps make the process easier.  

Download the guide (PDF).

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