What is Social Security Disability Insurance?
Social Security Disability Insurance (SSDI) is a program managed by the Social Security Administration (SSA) that provides cash benefits to qualifying individuals who are unable to work because of disease or disability, but are eligible to retire. If you live with Parkinson's disease, are below 65 years of age, and are unable to work due to your Parkinson's disease and/or other condition, you might be entitled to SSDI benefits.
To be eligible for SSDI benefits, a person living with Parkinson's must:
- Have worked and paid enough Social Security taxes (FICA).
- Have a severe disability that is caused by disease or injury severe enough to prevent them from working at any job.
- Have a severe disability that is expected to result in death or has lasted, or is expected to last, for a continuous period of at least 12 months.
SSA estimates that the initial benefits application will take 90-120 days, but in reality filings can take up to eight months to complete. The appeals process for denied filings can likewise take from 90 days to well over a year to get a hearing, depending on caseloads. Nationwide statistics provided by SSA in 2005 stated that 52 percent of all SSDI applications are ultimately approved.
If you qualify for SSDI benefits, you also become entitled to Medicare, but not until two years after starting SSDI benefits. To learn more about Medicare coverage for people living with disabilities, please visit the Social Security Medicare information page.
If you will lose healthcare coverage and cannot wait for Medicare coverage to begin after the two-year waiting period, talk to an SSA representative about other types of publicly-financed healthcare coverage.
You can apply for Social Security disability benefits online, in-person, or on the phone. To learn more about the application process, visit the SSA Web site
Parkinson's Disease Work-Related Disability Assessment Form
PAN has learned that people with Parkinson's may have trouble receiving SSDI or Supplemental Security Income (SSI) benefits due to inadequate documentation of symptoms in their medical record. The purpose of the form below is to ensure that information that may be relevant to how Parkinson's disease affects your ability to work is included in your medical record, particularly if you think you may apply for SSDI or SSI. This form may also be useful in tracking your disease progression and can be updated as your condition and symptoms change.
It is important to note that this form is designed to supplement your medical record. It is not an official SSA form and does not replace or change the Social Security application.
Updating the Definition of Parkinson's
SSA regulations for Parkinsonism
are over twenty years old and do not adequately reflect the multitude of symptoms that may cause a person with Parkinson's disease to be unable to work. Since 2005, Parkinson's Action Network (PAN) has been working with the SSA to update the regulations used to determine SSDI eligibility. We expect new draft regulations to be released soon.
Currently, the SSA defines Parkinsonsian syndrome as "significant rigidity, bradykinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station." This definition does not recognize the non-motor symptoms for Parkinson's disease, which may include a variety of symptoms such as speech issues, swallowing impairment, sleep disturbance, cognition, depression, dementia, and pain.
PAN is optimistic that the new regulations will adequately reflect the recognized motor and non-motor symptoms and effects of Parkinson's disease. Once the draft regulations are released, there will be an opportunity for the Parkinson's community to submit comments on the draft regulations. We will provide in-depth analysis of the language, and provide guidance to the Parkinson's community to assist during the comment period. Stay tuned!