If you have been diagnosed with a rare disease and you can’t work because of the symptoms of that disease you may qualify for Social Security disability benefits. As long as you expect that you won’t be able to work for at least 12 months you can file an application for Social Security disability benefits. The money from disability benefits can be used to pay for any living expenses including rent or mortgage, food, utilities, or clothing. The benefits don’t have to be spent on medical expenses.
What Rare Diseases Qualify for Disability Benefits?
There are a lot of rare diseases that can qualify someone to be approved for Social Security disability benefits. Some conditions will qualify automatically for disability benefits, but not all of them.
Usually when someone applies for disability benefits, they must show a letter of diagnosis for a condition that is listed in the Social Security Administration’s Blue Book. Then they must show that they meet the specific requirements for that condition in the Blue Book. But rare disease may not have a listing in the Blue Book because of their rarity. When that happens sometimes people can qualify for disability benefits through one of the symptoms of that disease if the symptom has a listing in the Blue Book.
Some rare disease like Duchenne muscular dystrophy and cystic fibrosis qualifies for disability benefits because they have a listing in the Blue Book. Duchenne muscular dystrophy is one of the conditions that automatically qualifies for disability benefits because it’s on the Compassionate Allowance list.
What’s A Compassionate Allowance?
The SSA knows that some medical conditions are so severe that people who have them need help right away. So, when someone is diagnosed with a very serious condition that is on the Compassionate Allowance list their application is flagged by the computer system and pushed to the front of the line for processing. Often these applications are automatically approved or require only minimal proof of disability and diagnosis to get approved. Typically, the conditions on the Compassionate Allowance list are ones that are extremely debilitating or terminal. Many types of cancers are on the Compassionate Allowance list.
Unfortunately, none of the myositis diseases is included on the Compassionate Allowance list. Every year, however, the SSA adds new conditions to the Compassionate Allowance list.
What Do You Need To Include With Your Disability Application?
When you submit an application for disability benefits you should submit as much evidence of your condition and how it limits your ability to work as possible. A letter of diagnosis, medical tests and imaging like X-rays and MRIs, blood tests, notes from doctors, and other evidence can all help an application get approved quicker.
How To Apply For Social Security Disability Benefits
You can start an application for disability benefits on the SSA’s website. Or, if you have questions or need help with the application you can make an appointment to apply in person at your local SSA office.
Thanks to the Rare Disease Diversity Coalition for this resource.
If you qualify for social Security disability benefits, and expired that one year time and you have not reached the legal age to apply for Social Security benefits. What do you do? How do you get qualified for Social Security benefits? I’ve been trying for two years and keep getting denied even though I still cannot work with my dermatomyositis.
Karen, I’m afraid we are not specialists in Social Security or disability benefits. This resource came to us from the Rare Disease Diversity Coalition https://www.rarediseasediversity.org/. You may want to contact them. We understand that sometimes people need to hire a lawyer to help appeal denials.
Karen, I worked with a third part organization that helped me qualify fairly quickly. I don’t know if we can connect privately, but if so, I’m happy to share what worked for me.