Disability Benefits and HD

Disability is often an important part of an individual’s Huntington’s disease journey. There are many components to the disability process, including: Social Security, private/employer benefits, legal planning, financial planning, health insurance, other insurance, and long-term care planning. You can find many resources on these Disability Umbrella topics here. 


Allison Bartlett, Esq., the Senior Manager of Disability programs, will be on maternity leave from November 2023 – Mid-February 2024. Please find Maternity Leave FAQs here


Please let us know what you think about HDSA’s disability tools and resources: https://www.surveymonkey.com/r/6BG7JMG



Social Security Disability Insurance (SSDI)

The Social Security Administration operates two programs that provide income and health insurance benefits to people who are unable to work because of a long-term disability. They each have complicated requirements and differences. Both programs require applicants to meet a strict definition of disability, as determined by federal law. This section offers a basic understanding of the Social Security disability programs along with information about the application process and disability requirements. >

Resource Guides

Applying for disability benefits is a necessity for most HD families, but the disability process is often complicated and overwhelming, whether it is Social Security disability or private disability. Learn what information and evidence you need for a disability claim and how to complete an application. Please use the information and resources to help you navigate Social Security disability and the application process. >

Disability Chats

Disability Chat is designed to provide information, resources and support to both persons affected by HD and their caregivers who are either starting the disability process or have already filed but been denied benefits by the Social Security Administration as well as HDSA social workers who are assisting HD families with their disability applications in their region. >

Long-Term Care Insurance

The goal of HD long-term care services is to help maximize functioning and quality of life when the affected individuals no longer able to live independently. Learn more. >

Health Insurance Resources

Health insurance helps cover the cost of medical expenses and is essential for HD families. As HD progresses, the health insurance needs of the family may change, which often comes with questions about health insurance options and coverage. This section provides resources for Medicare, Medicaid, State programs, and private insurance. >

Ask Allison

Ask our disability expert, Allison Bartlett, general questions about the Social Security disability process, health insurance, and legal resources. >

Disability Tips Blog

Get weekly tips to help you navigate the Social Security Disability Process. >