Getting Social Security Disability for Huntington's Disease

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

By , Attorney · UC Law San Francisco
Updated by Diana Chaikin, Attorney (Seattle University School of Law)

The Social Security Administration (SSA) awards disability benefits to people who, due to a medically determinable severe impairment, are unable to work full-time for at least one year. If you have symptoms from Huntington's chorea—a rare degenerative disease affecting the brain cells—that have progressed to the point where you can no longer work, you may want to consider applying for disability.

What Is Huntington's Chorea (Huntington's Disease)?

Huntington's chorea—frequently referred to as Huntington's disease—is a genetic disorder that causes nerve cells in the brain to break down over time. Huntington's disease progressively leads to decreased coordination, cognitive decline, and psychiatric problems. In many people, the first sign of Huntington's disease is mental, such as trouble with concentration or low mood.

The term "chorea" in "Huntington's chorea" comes from a Greek word meaning "to dance," because the involuntary muscle movements associated with the disorder often resemble dancing. Huntington's chorea is often a symptom of Huntington's disease. While they aren't completely interchangeable, for the purposes of this article, "Huntington's disease" will be used to encompass Huntington's chorea.

Is Huntington's Disease a Disability?

As a brain disorder, Huntington's disease causes physical and mental symptoms, which—when serious enough to cause functional limitations—can be disabling. Most symptoms develop in your 30s or 40s, but in a few cases the disorder can begin in childhood ("juvenile onset").

Common physical symptoms can include:

  • jerky and uncontrollable movements that may be mistaken for clumsiness or fidgeting
  • rigidness or twisting of the body
  • difficulty swallowing or speaking
  • poor balance
  • trouble eating due to loss of muscle control that can lead to weight loss or malnutrition
  • problems sleeping, and
  • seizures.

Mental and cognitive symptoms include:

  • decreased ability to do complex tasks such as scheduling or following a multi-step recipe
  • loss of short-term and long-term memory
  • dementia
  • changes in personality
  • anxiety or depression
  • irritability, aggression, or compulsive behavior
  • difficulty being able to tell if others are upset by their expressions, and
  • increased suicidal thoughts or attempts.

Doctors don't currently have a cure for Huntington's disease, and life expectancy is around 10 to 30 years after diagnosis. Treatment typically involves medications (such as tetrabenazine or haloperidol) that help control unusual or unpredictable muscle movements, as well as physical therapy and counseling to aid in cognitive functioning.

Can You Get Disability for Huntington's Disease?

Disability benefits are available for people with Huntington's disease, but simply having a diagnosis of the disorder isn't sufficient for Social Security to approve your application. The SSA can find you disabled in one of two ways:

  • you meet (or equal) the requirements of a listed impairment, or
  • you don't have the physical or mental capacity for full-time work.

Because the SSA uses a sequential evaluation process to determine disability, the agency will look to see if you meet a listed impairment before determining whether you can work. If you "meet a listing", you'll get benefits without the SSA needing to decide that you can't do any jobs, but if you don't meet a listing, the SSA must still decide if any jobs exist that you can do.

Getting Disability by Meeting an Impairment Listing

Listed impairments are medical conditions that Social Security considers especially serious. The SSA maintains a "Blue Book" of listing criteria that the agency uses to evaluate these conditions. For example, the SSA might evaluate Huntington's disease with physical symptoms under listing 11.17 for neurodegenerative disorders, while symptoms that are solely cognitive or mental in nature may meet the requirements of listing 12.02 for neurocognitive disorders.

Meeting the Neurodegenerative Disorders Listing

You can get disability under listing 11.17 with medical evidence of one the following "sets" of symptoms:

  • An 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 your arms.
  • A "marked" limitation in physical functioning, as well as marked cognitive limitations in using information, interacting with others, finishing tasks, and managing yourself.

Social Security considers a limitation to be "marked" when you can't perform that activity by yourself on a regular basis. For example, a marked limitation in physical functioning might mean that you can only walk around the block if you're using a cane, while a marked limitation in mental functioning can mean that you need somebody else to remind you to take a shower.

Disability applicants under the age of 18 have a similar but separate set of listing requirements. Under listing 111.17, children with juvenile-onset Huntington's disease may qualify for disability benefits through the Supplemental Security Income (SSI) program if they have "disorganization of motor function in two extremities" with the same limitations in the first set of symptoms described above. Listing 111.17 doesn't provide for childhood disability benefits under the second set for cognitive symptoms, however.

Meeting the Neurocognitive Disorders Listing

If you don't have any physical symptoms from Huntington's disease, the SSA can instead evaluate your application under listing 12.02. You can meet these listing requirements with evidence of "significant cognitive decline" in at least one of the following areas:

  • complex attention (being able to divide your focus)
  • executive functioning (planning and using sound judgment)
  • learning and memory (using and retaining information)
  • language (communicating using proper grammar and vocabulary)
  • perceptual-motor (coordinating your movements), or
  • social cognition (behaving properly around other people).

The childhood listing for neurocognitive disorders, listing 112.02, can be met either by showing a decline in one of the above areas or by establishing that the child has a "clinically significant deviation from normal cognitive development" in at least one of those areas.

Both adults and children will need to show an "extreme" limitation in one, or a marked limitation in two, of the following areas of mental functioning:

  • understanding, remembering, and applying information
  • interacting with others
  • maintaining concentration, and
  • adapting or managing oneself.

Extreme limitations are worse than marked limitations, which is why you need to demonstrate an extreme limitation in only one area instead of moderate limitations in two areas. For example, somebody who needs a lot of extra time to complete a task might have a marked limitation in maintaining concentration, while somebody who can't finish the task at all could have an extreme limitation in that same area.

Getting Disability With a Reduced Capacity to Work

If you don't yet meet the criteria of one of the above listings, Social Security can still award you benefits if your residual functional capacity (RFC) rules out all jobs. Your RFC is a set of limitations, physical and mental, on what you're able to do in a work setting. The agency reviews your medical records and activities of daily living to determine what limitations to include in your RFC.

Physical and Mental Limitations in Your RFC

Huntington's disease can cause difficulties in motor functioning, such as spasms and muscle rigidity, that can restrict movements needed to lift and carry objects. Your RFC might therefore contain exertional restrictions against jobs that involve strenuous physical activities. Seizures can cause limitations on tasks involving working at heights and operating hazardous machinery, while tremors can restrict how long you're able to use your hands for typing. Trouble sleeping may lead to general fatigue that can further limit your physical stamina.

Any decline you have in your cognitive abilities should be included in your RFC as well. Issues with memory can inhibit your ability to carry out assigned tasks or remember which tools you should use on the job. Mental problems associated with Huntington's disease, such as anxiety or compulsive behavior, can affect your ability to adjust to changes in the workplace. Problems reading social cues can make teamwork difficult or cause trouble accepting suggestions from a supervisor.

How Social Security Uses Your RFC to Decide Whether You're Disabled

The agency will compare the limitations in your current RFC to the physical and mental demands of your past relevant work to see whether you could still do those jobs today. If you can return to your past work, Social Security can't find that you're disabled, and will deny your claim.

But if you can't do your past work, the agency will still need to see if any other jobs exist that you could perform, despite the limitations in your RFC. For people 50 years of age and older, that's often a matter of determining whether they have the skills to switch to less physically demanding work. Applicants younger than 50, however, generally need to show that they can't do even the simplest sit-down jobs before they can get disability benefits.

Medical Records Needed to Show Disability for Huntington's Disease

Your medical records are the foundation of your disability application. Social Security reviews your records to determine whether you meet a listing or, if not, what limitations to include in your RFC. The agency will be on the lookout for the following medical records:

  • clinical notes from your regular physician, preferably a neurologist, containing their observations of your symptoms over time
  • abnormal neurological examination findings, such as diminished reflexes
  • lab tests that show a genetic mutation called a "CAG repeat expansion"
  • a family history of Huntington's disease
  • psychological or psychiatric reports including neurocognitive testing, and
  • brain imaging, such as an MRI or CT scan.

Your doctors can help by submitting medical source statements containing their opinion on what activities you struggle with as a result of Huntington's disease. Consider scheduling an appointment with the doctors you see for treatment of your physical and mental symptoms separately, bringing a blank physical RFC or mental RFC form as needed for them to complete.

Applying for Disability Benefits With Huntington's Disease

The SSA can expedite the processing of disability applications for Huntington's disease under the Compassionate Allowance program. Initial decisions on compassionate allowance conditions can take as little as two weeks, instead of the more typical several months.

You don't have to do anything special to get your application fast-tracked as a compassionate allowance. Disability examiners for initial claims will flag your application for quicker processing. You can start your initial application using several methods:

  • File online at the Social Security website.
  • Call 800-772-1213 (TTY 800-325-0778) between 8 a.m. and 7 p.m., Monday through Friday, to speak with a representative.
  • Go in-person to your local Social Security field office.

You can also have an experienced disability attorney help you through the initial application process, as well as any subsequent denials. Your lawyer can collect important evidence, submit a brief to the SSA explaining why the agency should find you disabled, and represent you at a disability hearing, if necessary.

Updated February 13, 2024

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