Muscular Dystrophy Qualifies for Disability Benefits. Here’s How.
Are you unable to work because of muscular dystrophy? 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 muscular dystrophy 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 muscular dystrophy 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 muscular dystrophy, 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 muscular dystrophy?
Muscular dystrophy is the name for a group of disease that cause a person's muscles to weaken over time. There are several types of muscular dystrophy and the condition can be lifelong or start in adulthood.
Some people with muscular dystrophy live relatively normal lives. But many people have symptoms can be debilitating, and make it very hard to work. Since the disease is progressive (gets worse over time), some people are able to work for a while, but eventually find it too difficult. Many people with muscular dystrophy:
- experience physical limitations such as fatigue (tiredness), walking, involuntary spasms or twitches, inability to relax muscles, and muscle weakness.
- have trouble breathing because the muscles that control the lungs can weaken
- have vision problems
- have learning problems which might make it har to remember things, think normally, or follow instructions
Because of these symptoms, many people with muscular dystrophy lose their jobs and find themselves unable to earn a living.
Can muscular dystrophy qualify for disability benefits?
Yes. As a general rule, if you have muscular dystrophy and it makes it hard to work, you’ll qualify as disabled. If you are able to work or aren't getting any treatment, you probably won't qualify.
Some quick background: Under government rules, some medical conditions – like needing a kidney transplant or losing both your legs – always qualify a patient as disabled. Others - like pregnancy - are never enough. Muscular dystrophy is somewhere in between: You can qualify due to muscular dystrophy, but just being diagnosed isn't enough. Instead, it depends on how far along your illness has progressed and how your condition and treatment impact you.
Muscular dystrophy usually qualifies you for benefits if any of the following are true:
- you need extreme medical care, like a feeding tube or ventilator
- you have a lot of trouble standing, balancing, walking, or you use a cane or wheelchair to get around
- you have a lot of trouble understanding information, interacting with others, concentrating, or controlling your behaviour
- you can't communicate well because you can't speak, hear, or see
The formal guidelines are complicated, but it boils down to this: If you can’t work because of your condition despite trying to overcome it, and as a result you just can’t hold a job, you’ll probably qualify as disabled with proper help.
I have muscular dystrophy. Should I apply for benefits?
If you can’t work because of muscular dystrophy, 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:
- Your symptoms make it very hard to work
Consider waiting and applying later if
- You haven’t yet stopped working (even if you worry you’ll need to soon)
Probably don't apply if:
- You're working (earning more than about $1,300 per month) and don't plan to stop
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. Get in to see a neurologist (brain and nerve doctor), try the treatment they recommend, and go back for follow-up visits. This will help build the paper trail you need to get benefits. And more importantly, it’s critical for your health.
I want to apply. What should I do next?
Atticus exists to help to people navigating this process — so the easiest thing to do is get free advice tailored to your situation via our online tools or caring staff. (People love us, and we don’t charge anything for our help.)
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— and for muscular dystrophy patients in particular, that’s generally the right call. 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:
Initial Application: You submit a lengthy written application, details on past work and treatment, and copies of your medical records. A government staffer reads your file and makes a decision. (Only 20% of people win at this stage; the large majority are denied.)
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.
Why most people seek professional help
Because the process is so complicated, most successful applicants get a lawyer (or trained non-lawyer representative) to help. Lawyers will pull together your medical records, write your application, advise you on getting proper medical treatment, submit all the paperwork, and (if needed) argue your case before a judge.
There are two big upsides to hiring a lawyer: (1) They do almost all the work for you and hold your hand through the process. (2) They increase your chance of winning. (Government studies show that at the appeal stage, people with a lawyer are three times as likely to qualify.)
The only downside is cost. Lawyers aren’t allowed to charge any up-front fee so it doesn’t matter if you can afford one right now. If they win your case, they get 25% of any back pay (retroactive benefits) that they win for you. This is worth it for almost everyone — you only pay if you win (if you lose, you pay nothing), you only pay once, and the cost pales in comparison to the amount you get.
Should I hire a professional?
Almost every applicant that applies because of muscular dystrophy should hire a lawyer or other professional. (We don’t say this to everyone — see, for example, our articles on Huntington’s disease or pancreatic cancer.)
Why? This process can be particularly unfair for muscular dystrophy patients. Since it’s hard to diagnose (there’s no official test for it) and isn’t usually disabling, the government treats muscular dystrophy patients with suspicion and requires detailed proof. Having assistance from an expert can make all the difference.
There are only a handful of situations where we tell muscular dystrophy patients to consider applying on their own:
- If your muscular dystrophy is so advanced that no one — not even the most skeptical judge — would believe you could hold a job. (This is the case if you’re seeing a neurologist regularly and taking medication, you still have severe symptoms like being unable to control your movements, or needing medical intervention to eat or breathe.) If this is the case you can likely win on your own, as long as you feel comfortable with government paperwork (about the same as filing your taxes) and requesting medical records.
- If you can’t convince a lawyer to take your case. Sadly, this can happen; if your case is quite hard to win, it can be difficult to find a lawyer to represent you. (Though we recommend trying our service before you give up!) In this case, you can apply on your own, and then try again to find a lawyer once you’ve been denied once — at which point it’s often easier. For more information, see our full article: How to apply for disability on your own.
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.