Social Security Disability for Huntington's Disease: Benefits and Filing Information

Huntington's disease (HD), sometimes referred to as Huntington's chorea, is a genetic disorder that affects the brain. HD is one of many types of possible degenerative brain disorders, and like other such disorders, Huntington's disease progressively leads to decreased coordination, cognitive decline, and psychiatric problems.

Disabling Symptoms of Huntington's Disease

Most symptoms of Huntington's disease become noticeable in mid-life. More rarely, it can begin in childhood (juvenile-onset). Huntington's disease (HD) is incurable, and patients who suffer from HD may die from it several decades after onset.

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 or speaking
  • not being steady on your feet, 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:

• personality changes
• anxiety and/or depression
• reduced display of emotions
• irritability, aggression, or 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 of a listing Social Security's listing of impairments or that you no longer have the physical or mental capacity for work.

Meeting an Impairment Listing

Huntington's disease can be assessed under either the neurological disorders listing for neurodegenerative diseases (11.17) or, if the disabling symptoms are all cognitive or mental in nature, under the mental listing for neurocognitive diseases (12.02).

Neurodegenerative disease. To show that your HD meets the criteria for disability under the neurological listing, you must have one of the following:

• The inability to control the movement of at least two extremities (either an arm and a leg or two arms or two legs), resulting in extreme difficulty in the ability to balance while standing or walking, to stand up from a seated position, or to use the arms.

OR

• "Marked" physical problems along with a "marked" limitation in any one of the following:
  • thinking (understanding, remembering, or applying information)
  • interacting with others (social problems)
  • finishing tasks (problems with concentration, persistence, or speed), or
  • managing oneself (setting realistic goals, making plans independently, being aware of normal hazards).

Note that marked means worse than moderate, but less than extreme.

For children with juvenile-onset HD, meeting the first set of symptoms will qualify them for disability benefits through the SSI program (if they meet the financial requirements).

Neurocognitive disease. If an applicant doesn't have severe physical limitations, Social Security will evaluate his or her difficulties under the mental listing for neurocognitive disorders. To meet the listing for neurocognitive disorders, an applicant must have at least one of the following problems that is significantly worse than before:

• problems paying attention to tasks or listening to others
• learning and memory deficits, especially short-term memory
• problems with planning ability and judgment
• difficulty using language, grammar, or vocabulary or difficulty speaking
• decrease in coordination, such as eye-hand coordination or walking, and/or
• poor social judgment and inability to use proper social behavior.
• For children, the requirements are the same except that the child can have either a decline in one of the above areas or a clinically significant deviation from normal cognitive development in one of the above areas.

In addition, an adult or child applicant must have an extreme limitation in one, or a marked limitation in two of the following:

• thinking and remembering
• interacting with others
• finishing tasks, or
• managing oneself appropriately.

Reduced Capacity to Work

If you don't yet meet the criteria of one of the above listings, Social Security may award benefits to you if you can no longer do your job due to physical or mental limitations, and there is no other job you can be expected to learn. Social Security uses a Residual Functional Capacity (RFC) to assess your abilities and limitations.

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 and having a reduced display of emotions can make social interactions with coworkers difficult.

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.

Expedited Decisions for Huntington's Disease

Huntington's disease can cause such serious disability that the Social Security Administration (SSA) will expedite the handling of an application for benefits based on HD under the "compassionate allowance program." An initial decision made under this program can take one to two months rather than four or five.

To qualify, the applicant's condition must meet either the listing for neurodegenerative diseases or the listing for neurocognitive diseases. Information that will help Social Security make an expedited decision include medical records that document the progression of motor, cognitive, and psychiatric symptoms, a family history of HD, and abnormal neurological exam findings. Psychological or psychiatric reports including neurocognitive testing are needed to prove cognitive and mental limitations. Laboratory testing showing a CAG repeat expansion in the HD gene (40 or more CAG repeats and brain imaging can also be helpful.