My SSA Disability Story Survey

If you require immediate assistance, please contact the HDSA National Helpline at 800-345-HDSA or Seth J. Meyer, Community Services and Resource Development Manager at smeyer@hdsa.org.

1. Have you or a loved one ever received disability benefits for HD from the Social Security Administration?

Have you or a loved one ever received disability benefits for HD from the Social Security Administration? Yes

2. If yes, did you experience any difficulties, delays, or denials in receiving a disability determination from SSA?

If yes, did you experience any difficulties, delays, or denials in receiving a disability determination from SSA? Yes

3. What do you think caused the delay?

What do you think caused the delay? There was a delay in receiving the medical paperwork

The disability examiner was unfamiliar with HD

I/my loved one did not have chorea

There was no letter from a physician/neurologist

Other (please specify)

4. What stage of HD were you/your loved one in at the time of application?

What stage of HD were you/your loved one in at the time of application? Early Stage

Mid Stage

Late Stage

Please provide details

5. Once you started receiving disability, did you have to wait to receive Medicare?

Once you started receiving disability, did you have to wait to receive Medicare? Yes

6. If yes, Did you/your loved one have health insurance during that time?

If yes, Did you/your loved one have health insurance during that time? Yes

7. Did your wait to receive Medicare prevent you or your loved one from receiving treatment for HD?

Did your wait to receive Medicare prevent you or your loved one from receiving treatment for HD? Yes

8. Please briefly share your story (limit 500 words)

Please be sure to include how long it took to obtain a determination, whether you had to appeal, how many times you appealed, whether you had to hire an attorney, how much it cost, whether you had health insurance while waiting for a disability determination, if not then how did the lack of health insurance affect you or your loved one.

Please briefly share your story (limit 500 words) Please be sure to include how long it took to obtain a determination, whether you had to appeal, how many times you appealed, whether you had to hire an attorney, how much it cost, whether you had health insurance while waiting for a disability determination, if not then how did the lack of health insurance affect you or your loved one.