Huntington's Disease Qualifies for Disability Benefits. Here’s How.
September 14, 2022 · 4 min read
Are you unable to work because of Huntington's? If so, there's a good chance you qualify for monthly payments and free health insurance from the U.S. government. We’ll help you figure out whether you qualify and what to do next.
Lots of Huntington's patients— rich and poor alike — get benefits from Social Security Disability. For patients and their families, this help can be life-changing. But not everyone with Huntington's is eligible, and government rules can make qualifying a nightmare. At Atticus, we help people cut through the red tape and get the benefits they need. We’ll explain clearly how this program work for people with Huntington's, then tell you what to do if you want to qualify.
What is Social Security Disability?
Social Security Disability Insurance (“SSDI”) is a government program that supports Americans who are medically unable to work. When someone says they’re “on disability” for a long period, they usually mean that they’re getting payments from Social Security Disability.
The program is huge: About 10 million Americans receive SSDI today, and about 2% of every U.S. paycheck goes to fund the program via taxes.
What do recipients get?
People who qualify for Social Security Disability get two big benefits:
A monthly check (usually between $700 and $3,000)
Free health insurance through Medicare or Medicaid (sometimes after a waiting period)
They also get other benefits, including extra money for young kids, forgiveness of student loan debt, an easier time qualifying for other programs, and higher Social Security Retirement payments later in life. There's no downside to receiving benefits, and it’s free to apply.
Who is eligible?
In order to qualify for SSDI, six things usually have to be true:
You’re under 66 years old
You’re getting treatment for a serious medical condition
Because of your medical condition, you can’t realistically hold a job
You're not currently working (or if you are, it's part-time and very low-paid)
You’re not expected to recover (or be able to work) within a year
Before getting sick, you worked and paid taxes for years*
* If you didn’t work previously, but you and your family have very little money, you can still qualify for a related program called Supplemental Security Income (“SSI”), and the rest of this article will still largely apply to you.
Qualifying is never easy: The government treats claims with suspicion, and rejects most applicants. But if you meet the criteria above, you can likely get benefits with the right help.
What is Huntington's disease?
Huntington's is a genetic disease that stops the brain from functioning properly, and causes personality changes, forgetfulness, difficulty controlling movements, slurred speech, difficulty swallowing, and other symptoms. The disease is genetic; it's caused by a mistake in the DNA and is passed from parents to children. Huntington's is progressive (it gets worse over time) and there isn't a cure, but treatments can help manage symptoms.
Because of these symptoms, many people with Huntington's lose their jobs and find themselves unable to earn a living.
Can Huntington's disease qualify for disability benefits?
Yes. As a general rule, if you've been diagnosed with Huntington's, you’ll qualify as disabled.
Some quick background: Under government rules, some medical conditions always qualify a patient as disabled. Huntington's disease is one of them. Since there is no cure, and the condition is fatal, any person with Huntington's, will qualify for benefits as long as they meet the non-medical criteria above.
I have Huntington's. Should I apply for benefits?
If you can’t work because of Huntington's, you should probably apply for benefits. It’s free and the help can be life-changing. But applying does take time and effort, and not everyone qualifies — so it’s only worthwhile if you have a chance of success. Here’s our advice:
Apply now if:
You have Huntington's and you are not working
Consider waiting and applying later if
You haven’t yet stopped working (even if you worry you’ll need to soon)
Whether you decide to apply now or later, the best thing you can do in the meantime is to get as much medical care as possible. Build a good relationship with your neurologist (brain and nerve doctor), try the treatment they recommend, and make sure your doctor understand the impact your condition has on your life. This will help build the paper trail you need to get benefits. And more importantly, it’s critical for your health.
Applying for disability takes preparation. You can win, but this system doesn’t make it easy. So it’s worth taking some time to understand how things work.
The first step is to make a choice: Do you want to (a) Apply on your own, or (b) Get a professional to handle the process for you? Most successful applicants hire a professional. But not everyone needs to, and not everyone who wants to can. We’ll explain both paths and help you decide.
How the process works
The government fears that people will exaggerate their medical problems in order to get free money. So it puts every applicant under a microscope. To win, you have to prove — beyond a doubt — that your medical condition is severe and disabling.
There are two major stages in the process, and most people will need to go through both:
Appeals: If you lose, you appeal your denial and eventually get a hearing with a judge. At the hearing, you get to submit additional evidence, speak to the judge directly, and cross-examine government experts. (Among people who make it to this stage, about 50% win. If you lose, there are several more stages of appeal.)
Unfortunately, the process takes time: 3-6 months to get an initial decision, and 1-2 years (or more) to get a hearing. Even a small mistake or omission (like a doctor failing to send in records, or bad answer on a form) can doom an application. The good news is that once you win – even if it takes a long time and several appeals – you get “back pay” (retroactive benefits) for the time you should have been getting benefits.
Should I hire a professional?
Almost every applicant that applies because of Huntington's should apply on their own.
Why? The government recognizes that it is unreasonable to expect Huntington's patients to be able to hold a job.
There are only a handful of situations where we tell Huntington's patients to consider hiring a lawyer. For example, if you have a really unusual complication.
For example, if you took a long time to be diagnosed, during which time you weren't able to work at all. You may also choose to hire a lawyer if you simply aren't up for even simple paperwork.
How Atticus can help
Atticus is a new kind of law firm that helps you navigate the early stages of a disability claim. We help you choose the right approach, hire the right lawyer, and get on with your life. We won’t charge you a dime for our services, so there’s no cost to you.
Ready to get benefits today?
See what you qualify for
How long has your condition made it hard to work?
Jackie Jakab is Atticus’s Legal Director. She’s a licensed attorney, a graduate of the University of Chicago Law School, and has counseled thousands of people seeking disability benefits.
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