People with rare diseases face unique problems when applying for Social Security Disability (SSD) benefits. Rare conditions can be very serious, but they are often misunderstood or not well-documented. These problems make it harder for applicants to show they qualify for benefits.
Limited medical information and understanding
Rare diseases affect only a small number of people. Many doctors may not have much experience with these conditions, which can lead to missing or incomplete medical records. The Social Security Administration (SSA) uses specific medical rules to decide if someone qualifies for disability benefits. Rare diseases may not fit into these rules easily, which makes proving a case harder.
Difficulty providing enough medical evidence
To get SSD benefits, applicants need strong medical proof that shows how serious their condition is. This is often harder for rare diseases. Certain tests or evaluations might be needed, but they are not available all the time. It can also be difficult to find doctors who know a lot about rare conditions, leading to delays or missing medical details.
Proving long-term disability and inability to work
Rare diseases often have unpredictable symptoms. This makes it harder to show how the condition limits daily activities. Applicants need to prove their condition stops them from doing any work that pays above a certain amount. Rare diseases that vary in severity or are not widely recognized by the SSA make this step more challenging.
Challenges with the appeals process
Many people with rare diseases get denied SSD benefits the first time they apply. This often means going through a long appeals process. The appeals process can be complicated and usually requires more medical evidence or explanations. For those with rare conditions, this process can feel overwhelming and take a lot of time.
Finding support and resources can help applicants build a stronger case and improve their chances of getting the benefits they need for their rare condition.