Disability for Huntington's Disease: Benefits and Filing Information

Social Security Disability benefits are available to claimants with Huntington's Disease who meet certain qualifying criteria.

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Huntington’s disease (HD), sometimes referred to as Huntington’s Chorea, is a genetic nerve disorder that affects the brain. HD causes the degeneration of nerves in the brain, which leads to decreased muscle coordination, cognitive decline, and psychiatric problems.

Disabling Symptoms of Huntington's Disease

When HD starts later in life, it can cause only mild symptoms, but when it starts at a young or middle age, the progression of the disease is often rapid and it can quickly become disabling.

Physical symptoms include:

  • jerky and uncontrollable movement that may be seen at first as restlessness or lack of coordination
  • rigidness or twisting of the body
  • loss of muscle control, which leads to:
    • difficulty swallowing
    • difficulty speaking
    • not being steady on your feet
    • abnormal facial expressions, and
    • eating problems that cause weight loss or malnutrition
  • problems sleeping, and
  • seizures.

Cognitive symptoms include:

  • decrease in the ability to complete functions such as setting up a schedule or solving a multi-step problem
  • loss of short-term and long-term memory, and
  • dementia.

Mental symptoms include:

  • small personality changes (seen at the beginning of the disorder)
  • anxiety
  • depression
  • reduced display of emotions
  • irritability
  • egocentrism (focusing only yourself and not caring about others)
  • aggression
  • compulsive behavior
  • difficulty being able to tell if others are upset by their expressions, and
  • increased suicidal thoughts or attempts.

When Can You Get Disability for Huntington's Disease? 

In order to be awarded Social Security Disability benefits, you must show either that you meet the requirements for Huntington's disease as listed in Social Security's listing of impairments (the "blue book") or that you no longer have the physical or mental capacity for work.

Meeting the Impairment Listing

Huntington's Chorea is specifically listed in Social Security's blue book under degenerative disease. To show that your HD meets the criteria for disability in this listing, you must have one of the following:

  • Involuntary movements or lack of coordination in two extremities that cause significant, continued problems with walking or the use of your arms, hands, and fingers.
  • Changes in your cognitive abilities, such as memory impairments, personality changes, emotional instability, or loss of I.Q., that have lead to difficulty in two or more of the following areas:
    • performing daily activities
    • social functioning
    • concentration and persistence, or 
    • avoiding decreases in overall functioning due to decompensation.
  • A mental disorder that for at least two years that has limited your ability to work and is managed by a doctor through medication or therapy, and one of the following:
    • repeated significant decreases in functioning due to decompensation
    • inability to manage even minimal mental demands, or
    • the need to continue to live in a highly supported living situation (having living in one for at least one year).

Reduced Capacity to Work

If you don't yet meet the criteria of the degenerative disease listing, Social Security may award benefits to you if Social Security believes you are unable to return to work due to their disability. There are three areas of abilities that are focused on to assess if you are able to work, including physical, mental, and sensory abilities. Social Security uses the Residual Functional Capacity (RFC) to assess your abilities and limitations in these areas.  

Physical abilities. Those with HD who have uncontrollable movements and jerking, loss of muscle control, and rigidness or twisting of the body would have a hard time performing tasks that included moving or lifting items, and decreases in balance would increase the difficulty of completing those tasks. Sleeping problems may cause increased fatigue that could limit physical abilities.

Mental abilities. For those with HD, decreases in cognitive ability can impair their ability to understand and be able to complete tasks given to them. If memory problems are beginning, the individual may not be able to remember tasks given to them or the steps necessary to complete tasks.

In addition, there are several behavioral problems associated with HD that could make functioning in the workplace hard. Irritability and aggression can make it difficult to respond properly to supervision. Anxiety and compulsive behavior can make it hard to adjust to changes and deal with stresses that occur in the work place. Difficulty being able to tell if others are upset by their expressions, egocentrism, and reduced display of emotions can make social interactions with coworkers difficult.

Sensory abilities. Some patients with HD experience decreases in the ability to speak clearly, which could significantly hinder communication with supervisors and co-workers in the workplace.

After Social Security completes your RFC, the agency will decide if there is any work that someone with the abilities and limitations in your RFC could do. For more information, see our on how Social Security uses the RFC to make this decision.

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