Being diagnosed with a rare disease can be difficult for multiple reasons. While patients must cope with whatever medical and financial complications the disease itself brings, they must also learn to navigate their symptoms in a world that may be less familiar with their uncommon disorder.
For those affected by one of several thousands of rare disorders, disability benefits may be an option. Social Security disability insurance (SSDI) is a government program that provides monthly benefits to people and families in need. If you or a loved one has been diagnosed with a rare disorder and is unable to work or perform daily tasks, continue below to learn about the program’s qualifications.
When the Social Security Administration (SSA) reviews an application, they must ensure that an applicant is “totally and permanently disabled” to qualify for monthly benefits. This means that the applicant must have a severe physical or mental disorder that is expected to last longer than one year or result in death. To begin, the SSA refers to the “Blue Book”, which lists all SSA-approved disorders and the requirements needed to qualify.
The SSA has different requirements for each rare disease to consider an applicant eligible for benefits. Each disorder can be found in it’s corresponding listing for the Blue Book, which is categorized by disease type and location in the body. For example, fibrous dysplasia (FD) is a rare bone disease that results in abnormal growths on one or more bones in the body. This is listed in the Blue Book under section 1.00 - “Musculoskeletal System” under subsection 2: “major dysfunction of a joint (due to any cause)”. To qualify with FD, applicants must show a “gross anatomical deformity” of a joint(s) as well as any medical tests to show pain or destruction due to the disease.
In some cases, only an official diagnosis is necessary for an applicant to medically qualify for benefits. For example, ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) is a condition that continuously injures nerve cells in the brain and spinal cord until most muscular function is lost. Because it is so severe, applicants need only prove their illness by a physician’s diagnosis in order to qualify for benefits.
In addition, certain diseases like ALS qualify for the SSA’s Compassionate Allowances
program. This program expedites applications for severe disorders in order to get applicants their benefits as soon as possible. For instance, a normal SSDI applicant may have to wait several months in order to receive notice on their eligibility for benefits. However, those who receive a Compassionate Allowance may see monthly benefits less than a month after sending in an application.
Social Security also has certain technical requirements that must be met. To qualify for disability benefits, applicants must have contributed a certain amount of money to Social Security in their working years. The amount of these contributions, also called “credits
”, differs slightly depending on the age and work history of the applicant.
For example: a 58-year-old SSDI applicant would need 36 credits to qualify for benefits. Because a person can only earn a maximum of 4 credits per year (one per work quarter), this applicant would have to have completed at least 14.5 full years of work credits to qualify for SSDI. These work credits can also be earned in separate years (for instance, 29 years of earning only 2 credits per year). For people over age 31, at least 20 of the credits you earn must have been earned in the last 10 years.
The SSA’s credit requirement chart and credit calculator can be found online for you to compare with. You can also contact your local Social Security office to determine whether or not you may technically qualify for benefits.
Applying for Benefits
Applications for SSDI can be found on the SSA’s main website
. This website also contains other information, such as pre-application questionnaires, application preparations lists, and FAQs about the application process. If you would prefer to apply elsewhere, you can call your local Social Security office to either schedule an appointment or fill out your application over the phone. You also have the option of appointing an Authorized Representative if you wish to have someone else fill out your information for you instead.