How Do I Get Disability Benefits for Dystonia?

Dystonia is a neurological disorder that causes uncontrollable muscle contractions, leading to involuntary and repetitive movements. Dystonia can also cause painful cramping in your affected body parts.

Dystonia is believed to be related to a problem in the part of your brain that controls muscle contractions. You might have dystonia alone or as a symptom of another condition, like Parkinson's disease or multiple sclerosis.

In most cases, the cause of dystonia is unknown (idiopathic dystonia). But it can be genetic (hereditary) or acquired (secondary dystonia), which occurs after damage to the brain from injury, environmental contaminants, or certain medications.

How much dystonia affects someone's ability to function varies from person to person. But the inability to control your muscle movements and the pain and exhaustion that can accompany dystonia can make it difficult to hold down a job. If your symptoms are severe enough to keep you from working, you might qualify for disability benefits through the Social Security Administration (SSA).

What Are the Symptoms of Dystonia?

Dystonia can affect your entire body (generalized dystonia) or just part of your body (focal dystonia). Generalized dystonia usually develops during childhood and can start in one part of your body and eventually affect your whole body. Focal dystonia most frequently develops in adulthood and usually affects part of your upper body, such as your head, face, throat, neck, arms, or hands.

The primary symptoms of dystonia are uncontrolled muscle movements and cramping, which often get worse over time. Early symptoms can include any of the following:

• foot cramping
• tendency for your foot to turn or drag
• involuntary pulling or turning of your neck
• spasms that cause your eyes to close uncontrollably
• trouble speaking
• handwriting that gets worse after you write a few lines
• tremors, and
• pain or exhaustion because of constant muscle contractions.

Your dystonia symptoms might occur or worsen when you're stressed or tired.

Can I Get Disability for My Dystonia?

You might qualify for Social Security disability insurance (SSDI) or Supplemental Security Income (SSI) disability with dystonia. But you'll need to prove that you can't do any kind of work. Social Security will prepare a residual functional capacity (RFC) assessment to determine whether you can still work.

What's in an RFC for Dystonia?

An RFC assessment evaluates your physical and mental ability to perform work-related tasks despite your symptoms and lists what you can and can't do. For example, if your dystonia affects one of your arms, it could severely limit your ability to:

• push
• pull
• lift, and
• carry objects.

These limitations would reduce the number of jobs you could perform. Or if your dystonia affects your legs, it could greatly diminish your ability to:

• walk
• climb, or
• stand/balance.

Trouble walking or standing, or even getting up from a seated position, could rule out a large number of jobs. The more jobs your RFC eliminates, the more likely it is you'll get disability benefits.

Your RFC will address any cognitive limitations you have as well. Intense muscle contractions caused by dystonia can cause significant pain that interferes with your ability to focus or complete tasks. Social Security must consider how your pain affects your ability to work. Chronic pain could also cause you to miss a lot of work, making keeping a job difficult.

In addition, the side effects of medication used to control pain can cause issues, like:

• memory problems, or
• excessive sleepiness that requires frequent, unscheduled breaks.

The combined effect of these limitations could significantly reduce the number of jobs you could perform.

In addition, dystonia that affects your tongue and jaw might cause slurred speech. Being unable to communicate effectively would further limit the jobs you could perform.

How Does Social Security Fill Out and Use Your RFC?

Social Security needs to know how dystonia affects your ability to perform day-to-day tasks, like:

• cooking
• cleaning
• dressing
• eating, and
• driving.

You should also ask your treating physician to prepare a medical statement that details your work-related limitations. Social Security will rely on your doctor's statement when assessing your RFC.

Social Security will then compare your RFC to your past jobs. If it doesn't look like you could do your prior work because of your limitations, the SSA will try to identify other types of jobs you could do within your RFC. If your RFC indicates that you can't perform any jobs, given your limitations, you'll be awarded disability benefits.

Learn more about how Social Security decides if you can work.

A Shortcut to Qualifying for Disability Benefits

Another possible way to qualify for disability is by meeting the requirements of an official disability listing. Social Security publishes the criteria for many medical conditions that are severe enough to qualify automatically for disability benefits.

Social Security doesn't have a specific listing for dystonia. But there's a disability listing for Parkinson's disease (listing 11.06), which has symptoms closely related to dystonia (and can include dystonia).

If Social Security considers your symptoms to be of equivalent severity to those in the parkinsonian listing, you could qualify for disability benefits under that listing. For instance, dystonia's involuntary movements can result in severe problems walking and using your hands. Social Security might consider these limitations similar enough to those in the Parkinson's listing to qualify for benefits.

To qualify for benefits under the Parkinson's listing, your medical records must document one of the following:

• You're unable to control the movement of at least two extremities (either an arm and a leg or both arms or legs), resulting in extreme difficulty:
• using your arms
• balancing while standing or walking, or
• standing up from a seated position.

• You have a severe limitation in physical functioning (less extreme than in the first set of symptoms) and you have serious trouble with:
• understanding and remembering information
• interacting with others
• completing tasks on time, or
• adapting to changes or taking appropriate safety precautions.

Medical Evidence Needed to Prove Disability for Dystonia

You must also provide Social Security with your complete medical history, dating back to the onset of your dystonia. Your medical records should show the basis of your diagnosis, such as records of:

• physical exams
• laboratory tests
• diagnostic imaging, like X-rays and MRIs
• a spinal tap
• genetic testing, which shows you carry a mutation that's been linked to dystonia
• EEGs (electroencephalograms), which measure the electrical activity of your brain, or
• EMGs (electromyograms), which measure your muscle response or electrical activity.

Your medical records should also contain information about all treatments or medications you've tried, including their effectiveness and side effects.

If you have dystonia and a mental condition like anxiety or depression, you'll want to include information about your mental condition as well. Social Security must consider the combined effect of all your medical conditions on your ability to work—both physical and mental.

Eligibility Requirements for Disability

In addition to being medically disabled, you must meet the eligibility requirements for disability. To be eligible for SSDI or SSI, you can't be engaged in any substantial gainful activity—meaning you can't earn more than a limited income ($1,550 in 2024). And your disabling dystonia symptoms must have lasted—or be expected to last—at least 12 months.

To be eligible for SSDI benefits, you must have a significant work history at jobs where you paid FICA taxes to Social Security. Learn more about the SSDI work requirement.

If you don't meet the SSDI work requirements, you might still qualify for SSI, but only if you meet this needs-based program's income and asset limits.

How to Apply for Disability Based on Dystonia

If you're applying for SSDI, you have three options:

• complete the online SSDI application
• apply by phone by calling Social Security's national office at 800-772-1213 (TTY 800-325-0778), or
• contact your local Social Security office for an appointment to apply in person.

If you're applying for SSI, you can call the number above or contact your local office. You can also start an SSI application online, but Social Security must contact you to complete it.

Learn more about choosing the best way to apply for disability benefits.

_{Updated November 17, 2023}