Disability and Dystonia - Social Security Benefits and Filing

Social Security evaluates dystonia in a similar way to Parkinson's Disease.

Dystonia is a neurological disorder that causes the uncontrollable contraction of certain muscles, which can cause involuntary muscle movements and repetitious movements. Dystonia can be either generalized or focal. Generalized dystonia usually develops during childhood and may eventually affect the entire body. Focal dystonia most frequently develops in adulthood and usually affects the head, face, neck, or arm. The exact cause of dystonia is unknown, though genetic factors and the presence of other diseases such as  Parkinson’s  appear to contribute to its development.

Can I Get Disability for My Dystonia?

To determine whether your dystonia should keep you from performing work, the SSA will prepare a  residual functional capacity assessment  (RFC) that evaluates your ability to perform work-related tasks in light of your symptoms. For example, if your dystonia affects one of your arms, then your ability to push, pull, lift and carry will be severely affected. These limitations would reduce the number of jobs you could perform.

If your dystonia affects the functioning of a leg, your ability to walk, run, or stand will be diminished. This limitation would also reduce the types of jobs you would be able to do. Occasionally, dystonia will affect the tongue and jaw, causing slurred speech. The inability to communicate effectively would have a severe impact on what jobs you could perform.

The SSA will also consider how your dystonia affects your ability to perform day-to-day tasks such as cooking, cleaning, dressing, eating, and driving; therefore, you should provide the SSA with a description of how your dystonia affects your ability to perform these activities.

The SSA also considers the effect of pain on the ability to work. Because of the intense muscle contractions that occur with dystonia, many sufferers experience significant pain.  Chronic pain  may interfere with your ability to focus or complete tasks in an acceptable period of time. Chronic pain may also result in frequent absenteeism, which would preclude gainful employment. In addition, if you take medication to alleviate the pain associated with your dystonia, you may experience difficulty with memory or excessive sleepiness that requires frequent and unscheduled breaks. The combined effect of these limitations could significantly reduce the number of jobs you could perform.

You should ask your treating physician to prepare an RFC statement for you that details all of your  work-related limitations. The SSA will rely on it in preparing its RFC assessment. You must also provide the SSA with your complete  medical history, dating back to the onset of your dystonia. These records are necessary to support your doctor’s opinion about your ability to work.  

The SSA will then use your RFC to decide whether there are any jobs you can perform with the limitations in your RFC. If not, your disability claim will be approved. For more information on how the SSA makes this assessment, see our section on  how Social Security decides if you can work.

Alternative Way to Qualify for Disability Benefits

Another possible way to qualify for disability is by meeting the requirements of one of Social Security's official disability listings. Social Security publishes the criteria for a number of severe illnesses to qualify for disability; if you meet the criteria of a disability listing, you automatically qualify for benefits. Although Social Security does not have a specific disability listing for dystonia, it does have a disability listing for Parkinson's disease, whose symptoms are closely related to dystonia and can actually include dystonia (for more information, see the  Dystonia and Parkinsons Foundation).

If Social Security considers your symptoms to be of equivalent severity to those in the listing for Parkinson's disease, you may be able to get disability benefits under Social Security's listing for Parkinsonian disease. For instance, dystonia's involuntary movements can result in severe problems walking and using your hands, and Social Security may consider these disabling characteristics 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:

  • The inability to control the movement of at least two extremities (either an arm and a leg or two arms or two legs), despite at least three months of treatment. This must result in extreme difficulty in the ability to balance while standing or walking, to stand up from a seated position, or to use the arms.

OR

  • “Marked” physical problems along with a "marked" limitation in any one of the following:
    • thinking (understanding, remembering, or applying information)
    • interacting with others (social problems), or
    • finishing tasks (problems with concentration, persistence, or speed).

Note that marked means worse than moderate, but less than extreme.

Standard Requirements for Disability

In addition to the being found medically disabled, you must meet the standard requirements for collecting disability. First, you cannot earn more than $1,170 a month from working, and the symptoms of your dystonia must prevent your employment for at least 12 months. There are also requirements specific to the SSDI and SSI programs.

SSDI, Social Security Disability Insurance (also known as DIB, or disability insurance benefits), is available only to individuals who have a significant work history at jobs that have paid FICA taxes to the SSA. For more information, see our section on  SSDI eligibility.

SSI, Supplemental Security Income, is for people without an adequate work history. In addition, SSI is available only to those individuals who meet the income and asset limits set by the SSA. For more information, see our section on  SSI eligibility.

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