Huntington’s disease (HD) is rare disease with no cure. A hereditary neuro-degenerative disorder, it presents motor, cognitive, behavioral, and psychiatric symptoms that worsen over time. A mutation of a gene that results in gradual degeneration of the neurons in the basal ganglia of the brain causes HD. This degeneration progresses over time to harm other regions of the brain that control movements, thoughts, and emotions.
First documented in 1841 by physician Charles Oscar Waters, the disease was described in detail in 1872 by American physician George Huntington and given his name. Scientists discovered its genetic cause in 1993. The average age of HD onset is around 40 years old. Death from the disease usually occurs 15-20 years after the first symptoms appear. Doctors prescribe medications in order to manage HD symptoms.
Important: Because it is so severe and incurable, Huntington’s disease is on the Social Security Administration’s Compassionate Allowances list. The CAL list includes all medical conditions the SSA will approve for disability benefits in 30 days or less.
How Does the CAL List Speed Up Claim Reviews for Disability Benefits?
The CAL initiative helps speed up disability claim processing for applicants with certain medical conditions. Most CAL conditions get approved for benefits within 30 days of application. Adult-onset Huntington’s disease, Creutzfeldt-Jakob disease (CJD), early-onset Alzheimer’s disease, and a few other severe medical conditions are on this list.
The SSA first established this CAL list in 2008 and updates it every year. This can help Americans with severe conditions get Social Security disability benefits very quickly. People with a CAL list illness or injury can expedite their application process and skip the five-month mandatory wait period. Anyone whose condition forces them to stop working for at least one year may qualify for Social Security disability benefits.
The 3 Stages of Huntington’s Disease Progression
According to the Huntington’s Disease Society of America (HDSA), the disease has three stages:
Stage 1: Your Huntington’s Disease Symptoms are Mostly Manageable
In early-stage HD, you can likely still work, drive, and live on your own. Symptoms may include minor involuntary movements, subtle loss of coordination, difficulty thinking through complex problems, and some irritability or disinhibition.
This is when you should prepare to apply for Social Security disability benefits.
Stage 2: HD Symptoms Make Driving, Working, and Some Everyday Tasks Hard to Impossible for You
In middle-stage HD, you will likely lose the ability to work and drive. If you have not yet done so, it is time to apply for SSDI benefits at this point. You may no longer be able to manage your own finances or do household chores. Voluntary motor tasks, such as writing with a pen or pencil, will become increasingly difficult for you. You may have issues with swallowing, balance, falls, and weight loss. Problem-solving becomes more difficult.
Stage 3: You Need Constant Help with All Daily Living Activities
In late-stage HD, you will need assistance in order to complete any daily living tasks. Neuronal degeneration causes brain atrophy that presents like late-stage Alzheimer’s disease.
How Do Doctors Diagnose Huntington’s Disease?
According to the SSA’s Blue Book, your doctor will use the following to arrive at your Huntington’s disease diagnosis:
- Clinical history documenting changes in motor, behavioral and cognitive function,
- Family history of HD,
- Abnormal neurological exam findings,
- Abnormal neuropsychological test results, AND
- HD gene test with abnormal results (40 or more CAG repeats).
Brain imaging is optional. If you undergo this type of scan, it may reveal diffuse brain atrophy. Clinical presentation of HD may include:
- Changes in personality, behavior, cognition, speech, and coordination,
- Random uncoordinated extremity movements (chorea),
- Leg stiffness,
- Slowness of movement,
- Tremors, and
- Muscle spasms.
Steps to Apply for Social Security Disability with Huntington’s Disease
1. Make an appointment at your local SSA office or get a free consultation with a nearby Social Security attorney.
Call 1-800-772-1213 Monday through Friday during normal business hours to set up your local SSA field office appointment. Tell the Social Security agent you speak with that you wish to apply for Social Security disability benefits. Then, be sure to say you have Huntington’s disease and that your condition is on the Compassionate Allowances list.
Be aware that your local SSA office may take a while to schedule your appointment. Plan to spend at least 3-5 hours filling out forms if you have everything you’ll need to apply when you arrive. Many people require more than one in-person appointment to finish their disability claim paperwork.
If that sounds too stressful or difficult for you, we can match you with a nearby disability lawyer today. That attorney will call you during regular weekday business hours to discuss your SSD claim free of charge. When your phone rings, explain that you have a CAL list condition called Huntington’s disease. A lawyer charges $0 up front to review, discuss, and then file your disability benefits application. You only pay a small, one-time fee after the SSA awards you monthly benefits and a lump-sum back payment. Most people who qualify for this type of legal assistance get at least $13,000 plus monthly disability.
2. Ask friends, family, or a disability attorney to help you complete your application for benefits.
This can involve anything from proofreading your forms after you fill each field out to writing the answers for you.
Bonus Tip: Make copies of any blank forms before you start filling out your paperwork. That way, if you make a mistake, you can easily start over without needing to make a second trip.
3. Gather personal records you’ll need to show the Social Security agent or attorney during your in-person appointment.
Bring all these documents with you to your Social Security office appointment or when meeting with your attorney:
- Birth certificate, citizenship and/or permanent residency documents (i.e., your passport or Green Card)
- Social Security number
- Marriage and divorce records (if applicable)
- Names and birthdates of any children younger than 16 you have still living at home
- U.S. military service records (if applicable)
- Information about every job you held during the last 3 years
If you were self-employed, you’ll need to include those records for both this year and the previous two years. The SSA will also want to review your work history for the past 15 years, including:
- Your hire and termination dates for each employer
- All required job duties/work tasks
- Your educational background (i.e., high school diploma, college degrees, vocational schooling/training)
- Any additional job-related training or certifications you otherwise completed
4. Request and purchase complete copies of your medical records from any healthcare providers that treat your Huntington’s disease.
- Your medical records documenting progression of motor, cognitive, and psychiatric symptoms, and signs. This can also include your documented family history of HD and abnormal neurological exam findings consistent with HD.
- Lab testing showing a CAG repeat expansion in the HD gene (40 or more CAG repeats).
- Brain imaging records (if you have them).
- Psychological or psychiatric reports, including neurocognitive testing.
Expert SSDI Claim Assistance is Available
We can connect you with a Social Security attorney in your state who can review your claim right away. It costs you nothing to speak with an expert about how Huntington’s Disease makes full-time work impossible for you.
You will likely get disability benefits approved shortly after you file your SSD claim. Remember, an attorney charges you nothing in legal fees until and unless the SSA awards you benefits. And if you do get benefits with an attorney’s help, you’ll only pay a small, one-time fee.
Click the button below to start your free online benefits evaluation now:
Laura Schaefer is the author of The Teashop Girls, The Secret Ingredient, and Littler Women: A Modern Retelling. She is also an active co-author or ghostwriter of several nonfiction books on personal and business development. Laura currently lives in Windermere, Florida with her husband and daughter and works with clients all over the world. Visit her online at lauraschaeferwriter.com and linkedin.com.