Huntington’s Disease and Social Security Disability Benefits

Like many other illnesses, Huntington’s disease can strike without warning—changing a person’s life forever. In the days, weeks, and months following a diagnosis of Huntington’s disease, it is important to plan for the future. Although it is important to discuss medical and supportive care options, you should also make financial plans.

If you or a loved one has Huntington’s disease, it may become necessary to apply for Social Security Disability benefits. Disability benefits can provide financial support to those who can no longer work due to disability or illness.

The following article will provide you with an overview of the two main federal disability benefit programs and will prepare you to submit your, or a loved one’s, application.

Social Security Disability Insurance & Supplemental Security Income

As mentioned, there are two main federal disability benefit programs. Each of these programs is governed by the Social Security Administration and is intended to provide benefits to a certain demographic of people.  We have explained each program below:

Social Security Disability Insurance (SSDI): This program is intended to provide financial assistance to disabled workers and their eligible family members. Eligibility for SSDI is based on work credits accrued during the applicant’s past employment.  Work credits are used by the SSA to measure the amount of Social Security taxes they have paid throughout their career. This program is typically best-suited for adults with significant employment history.

Supplemental Security Income (SSI): SSI is intended to help disabled individuals of all ages who have little to no income. To qualify, applicants must fall within the financial limits set by the SSA.  Children under the age of 18 will be evaluated based on the income of their parents or guardians.

Learn more about SSDI and SSI eligibility, here:

Social Security Disability Medical Requirements

In addition to meeting the SSDI or SSI program requirements, all applicants will also have to meet certain medical requirements. These can be found in the SSA’s Blue Book—an official guide of disabling conditions and symptoms that qualify for disability benefits.

Adults with Huntington’s disease will likely be evaluated under Blue Book listing 11.17—Degenerative Diseases not Listed Elsewhere. Under this listing applicants will have to meet one of the following criteria:

  • Applicant must experience disorganization of motor function in at least two extremities resulting in the inability to do things like move, walk, sit, or stand; or
  • Applicant must experience chronic brain syndrome—or decreased brain function—as described, here.


Child applicants who have Juvenile Onset Huntington’s disease will be evaluated based on the same criteria.

Compassionate Allowance

The standard application process can take several months or longer.  The SSA realizes that individuals with particularly debilitating conditions may not be able to wait that long to receive benefits. For this reason, the SSA began the Compassionate Allowance initiative. Through Compassionate Allowances, applicants with certain conditions can receive disability benefits in as little as ten days. Both Adult Onset Huntington’s disease and Juvenile Onset Huntington’s disease qualify for Compassionate Allowance Processing.

It is important to note that you will not have to complete additional paperwork or make special requests to receive Compassionate Allowance processing. Complete and submit the standard application forms and the SSA will review your claim and expedite it accordingly.

View the Compassionate Allowance listing for Adult Onset Huntington’s disease, here.  View the Compassionate Allowance listing for Juvenile Onset Huntington’s disease, here.


Application Process

To begin the application process, adults can complete the necessary forms online or in person with the help of an SSA representative. Please note that children under the age of 18 are required to attend an in-person disability interview. To schedule your disability appointment or interview, contact the Social Security Administration at their main phone line (1-800-772-1213).

However you choose to apply, be sure to bring and submit all related medical records that you have on hand.  These may include record of the applicant’s diagnosis, a history of hospitalizations, a history of treatments, and findings of physical and mental examinations. You may also need certain financial and work-related records. For a complete list of necessary documents, visit the Adult Disability Checklist or the Child Disability Checklist.

When filling out the application paperwork, be sure to include all relevant details surrounding the applicant’s condition, symptoms, and limitations. Be sure to paint a clear and accurate picture of  the applicant’s life with Huntington’s disease.

Receiving a Decision

After submitting an application for disability benefits, an applicant with a Compassionate Allowance Condition can expect to receive a decision in as little as ten days. If approved, you will receive a letter outlining the payments you will receive. If denied, you will receive a letter explaining the reason for your denial and instructions outlining the appeals process.

If you are denied, do not panic and do not give up. You have 60 days in which to appeal the denial. As with the initial application, applicants with Compassionate Allowance conditions will receive expedited processing throughout appeals proceedings.

Remain persistent and organized and you will increase your chances of being approved for disability benefits. For more information about Huntington’s disease and Social Security Disability, visit the following page:



Molly Clarke is a writer for the Social Security Disability Help Blog where she works to promote disability awareness and assist individuals throughout the Social Security Disability application process.