Huntington's Disease UnitWhat to Expect at the ClinicPatient & Family Resources

Social Security now makes it easier for patients with Huntington's Disease to apply for Social Security Disability Insurance (SSDI). To meet the criteria for SSDI you must meet five criteria:

  1. You are no longer able to have “substantial gainful activity”
  2. The diagnosis is severe
  3. The diagnosis is disabling
  4. Based on your past history of employment, the current physical (meeting criteria as a neurodegenerative disorder) or cognitive (meeting criteria as a neurocognitive disorder) limitation must prevent you from continuing the work you had previously performed
  5. You are unable to adjust to other work based on your age, education and work experience

Individuals must have worked and paid FICA taxes for a certain period of time to qualify for SSDI.

You can apply online, by calling 800-772-1213 or in person at your local Social Security Administration office. Information about SSDI and other benefits is also posted on www.ssa.gov. For help with your application, call 888-700-7010.

Information you will need incudes:

  • Proof of age and social security number
  • Name and address of your doctors and hospitals
  • Medications and the dosage of the medications that you are taking
  • Marriage information
  • Dependent Children’s names, addresses and social security numbers
  • Employers for the last 15 years
  • Income statements such as W2 forms or income tax returns

As HD can cause a significant disability, the SSA will expedite applications for individuals with HD under the “compassionate allowance program." In this case, decisions regarding disability can take one to two months instead of the typical five months.

Medicare Eligibility

A person approved for SSDI is also entitled to Medicare. While SSDI pays cash benefits, Medicare A pays for hospital benefits, skilled nursing facilities, hospice and some homecare benefits. Medicare B is an additional insurance, paid for through a monthly premium, that covers doctor’s services, outpatient hospital care and some benefits that Medicare A does not cover. Medicare D is an optional plan that helps pay for prescription drugs. It is available to anyone enrolled in Medicare, but there is a cost for participation and benefits.

A person should apply as soon as the five criteria are met for SSDI. There is a mandatory 5 month waiting period, which starts the month after the application is submitted. An individual can apply for SSDI benefits for up to 12 months before the actual diagnosis is made.

Social Security Income

Supplemental Security Income (SSI) provides cash benefits for individuals who are 65 or older, blind, or disabled and who have little or no income. Every person who applies for Social Security Disability Insurance is screened for eligibility for SSI. A person may be eligible for SSI payments even during the 5 month waiting period of SSDI.

Useful Websites

Social Security Administration – 800-772-1213

Huntington’s Disease Society of America

Medicare.gov – 800-633-4227

Medicare Rights Center – 800-333-4114