Can You Get Disability Benefits for Ataxia?

Ataxia (ay-TAK-see-uh) occurs when the part of your brain responsible for coordinating movement has been damaged—the word ataxia actually means "without coordination." When medical professionals use the term "ataxia," it can be confusing, because they can use the word to describe both the symptoms of being uncoordinated or as a disease in itself, such as hereditary cerebellar ataxia or episodic ataxia.

Some people with ataxia may be able to effectively control the condition with a combination of medication and physical therapy. But others may have symptoms that significantly limit their daily activities and interfere with their ability to work. If you have ataxia that keeps you from working full-time for at least one year, you might qualify for Social Security disability benefits.

What Causes Ataxia?

Ataxia is a problem that affects the part of your brain that controls muscle coordination (the cerebellum). Although the cerebellum is only a small part of the total size of your brain, it contains over half of the brain's neurons. The cerebellum is important for a wide range of your body's functions, such as being stable on your feet, speaking clearly, and making sure your arms and legs move smoothly. Too many functional limitations in these areas can reduce or even eliminate the kinds of jobs you're able to perform.

There are many reasons why your cerebellum may be damaged to the point that you experience ataxia. For example, head trauma from a car accident can cause sudden ("acute") ataxia. Or, if you've had a stroke in the past that resulted in a lack of or reduced blood flow to your brain, your cerebellum may have struggled to get oxygen. The lack of oxygen can cause brain cells to die, resulting in ataxia. Other possible causes include autoimmune diseases such as multiple sclerosis, problems with your thyroid (the gland that helps regulate your body functions), and alcohol intoxication.

Inherited Cerebellar Ataxia, Episodic Ataxia, and Other Hereditary Ataxias

Inherited cerebellar ataxias—including episodic ataxias—are hereditary, meaning you were born with a defect in a certain gene that can cause your nerve cells to degenerate. While you might not have severe difficulties with your coordination now, over time you might notice that it gets harder to move your body the way you want it to. When the ataxia progresses to the point where it prevents you from doing tasks requiring coordination, you could have trouble holding a full-time job (and potentially qualify for Social Security benefits).

Different gene defects cause different types of inherited cerebellar ataxia. For example, changes to the KCNA1 gene can manifest as episodia ataxia type 1, while changes to the CACNA1A gene can cause episodic ataxia type 2. Some symptoms are common to all of the hereditary ataxias, such as changes in your voice, difficulty eating and swallowing, trouble with fine motor skills (like dropping cups or pens), having a hard time walking and balancing, and abnormal eye movements.

While each type of ataxia causes poor coordination, the exact signs and symptoms vary by diagnosis. Here are some of the most common inherited cerebellar ataxias and symptoms specific to each type:

• Friedreich's ataxia commonly appears as difficulty walking, eventually causing deformities in the feet, lower legs, and hands.
• Spinocerebellar ataxia can vary widely as to age of onset and severity of symptoms. Hand and eye tremors are some of the most common symptoms.
• Episodic ataxia involves brief episodes of muscle twitching, often triggered by stress.
• Ataxia-telangiectasia is a disease present in childhood that makes infections and tumors more likely.
• Charlevoix-Saguenay spastic ataxia is a disease that starts in childhood and results in the atrophy (shrinking) of leg nerves.

A lot of ataxia symptoms can mimic being drunk—slurring speech, stumbling around, falling, and dropping things. If you're chronically experiencing these symptoms, it's important to let your doctor know. Your doctor will want to find out what type of ataxia you have so that you can get the proper treatment.

Is Ataxia Considered a Disability?

The Social Security Administration (SSA) awards disability benefits to people who have a medically determinable impairment that keeps them from working full-time for at least one year. So if your ataxia symptoms haven't progressed to the point where you're no longer able to work, you won't be able to qualify for Social Security disability benefits.

But for people who haven't been able to work for at least twelve months due to ataxia—and have the medical records to support the severity of their condition—the SSA can find you disabled either "medically" or "vocationally." Qualifying "medically" means that you have evidence in your medical documents that the agency has already determined to be enough to find you disabled under the listing of impairments. Qualifying "vocationally" means that the SSA thinks that your functional limitations make it impossible for you to do any job.

Qualifying Under the Medical Listing for Neurodegenerative Disorders

Social Security specifically names certain ataxias as disabling under the listing of disorders that can get you medically approved. Listing 11.17, Neurodegenerative disorders of the central nervous system, mentions Friedreich's ataxia and spinocerebellar degeneration by name, but it covers all of the hereditary ataxias.

In order to qualify for disability under this listing, your medical record needs to contain evidence of major limitations in your mobility. You'll need to show that you either:

• have so much difficulty moving two of your extremities (arms or legs) that you're unable to independently stand up from a seated position, balance while upright, or use your upper extremities, or
• you're slightly better at moving around by yourself, but you also have a significant amount of mental difficulty with your memory, focus, social interactions, or taking care of your basic needs.

If you think you qualify for disability based on listing 11.17, try to obtain a medical source statement from your doctor. It's especially helpful to get a statement from a doctor who has special knowledge about your history with ataxia—for example, a neurologist you've seen for years. The doctor's statement should specifically address the limitations described by listing 11.17, like any difficulty you have getting off the examining table.

Qualifying Vocationally If You Don't Meet the Medical Listing

Since ataxias are progressive in nature, you might be at a stage where your limitations aren't enough to meet the requirements of listing 11.17 but are still serious enough to prevent you from working any longer. In this case, the SSA can still find you disabled "vocationally" if the agency concludes that there are no jobs available, anywhere in the country, that you can perform.

To figure out if you can work any jobs, the agency will be interested in the ways that your symptoms interfere with your activities of daily living ("ADLs"). Social Security asks about your ADLs because it makes sense that something you have difficulty doing at home would be something you would struggle with at work. For example, if you're out of breath after walking to the mailbox and back, it makes sense that you'd struggle to do a job where you'd have to walk around all day. Or if you fumble with zippers and buttons while getting dressed, you probably wouldn't do well at a job where you had to handle small objects like screws.

Social Security doesn't expect you to do a job that's beyond your capabilities, mentally or physically. The process the agency uses to figure out what you can and can't do in a work setting is called assessing your residual functional capacity (RFC). Your RFC is a list of the most intensive work you can do despite your limitations. For example, an RFC for someone with ataxia might include the following restrictions on work activities:

• can only walk and stand for two hours of an eight-hour day
• can sit for six hours of an eight-hour workday
• should lift and carry no more than 20 pounds occasionally
• can only grip, handle, or finger items occasionally, and
• should have no exposure to unprotected heights or dangerous moving machinery.

To prove that there are no jobs within your capabilities, you must first show that your RFC prevents you from returning to any of the jobs you've performed in the past. Depending on your age, education, and skills, you will also likely have to show that there are no other jobs that are less demanding, physically or mentally, that you could do. Disability applicants with ataxia under the age of 50 will generally need to show that they can't do even the simplest sit-down jobs, while applicants 50 years of age or older may have an easier time qualifying for benefits under a special set of rules called the "medical-vocational grid."

Medical Evidence You Need to Qualify for Disability Based on Ataxia

Having medical documentation of your ataxia is very important. When disability claims examiners review Social Security applications, they start by looking at your medical records. This includes any visits to your doctor's office, the doctor's clinical notes, and results from any lab tests you've had. You'll want to let Social Security know the dates and locations of any medical treatment you've been receiving related to your ataxia, including the following:

• Genetic testing. Genetic testing can confirm if a chromosomal abnormality is causing your condition.
• Imaging studies of the brain. You should have some kind of picture demonstrating damage to your cerebellum. Examples of these types of scans include magnetic resonance imaging (MRI) or computerized tomography (CT) scans.
• Nerve conduction studies. Conduction studies record the electrical activity through your muscles to see if they move slower or faster than normal. Poor results can support your claims of having difficulties with your motor control.
• Echocardiogram (ECG or EKG). EKGs record the electrical activity through your heart and help your doctor search for irregularities.
• Results of "mental status" exams or neurological exams measuring cognitive changes. These exams help test your motor and sensory skills by asking you to perform simple tasks such as walking in a straight line, recalling three words, or drawing a specific shape.
• Speech and language assessments. A trained speech pathologist can help determine a decline in your communication abilities.
• Documentation of "assistive devices." If you're using a wheelchair, walker, or cane, it shows Social Security that you have difficulties maintaining balance. It helps to have a prescription from your doctor for use of the assistive device.
• Ophthalmological examination. Ataxia can affect the coordination of eye movement, causing double vision or involuntary eye movements ("nystagmus"). An ophthalmologist may perform an eye exam separately or a neurologist or neuro-ophthalmologist might do the exam as part of a larger neurological examination.
• Referrals to specialized treatment. Supportive treatment for ataxia includes physical therapy to improve coordination, occupational therapy to help with basic tasks such as dressing or eating, and speech therapy to improve speech and aid swallowing.

Ideally, your medical record will contain most of the above information. If you're missing some tests, the SSA will consider whether you have a good reason why, such as not having insurance to pay for treatment.

Fast-Tracked Disability Decisions for Certain Ataxias

The SSA considers some rare health conditions debilitating enough to warrant expedited approval under the agency's Compassionate Allowances program. More than 600,000 people with extremely severe disabilities have been approved through this accelerated process, which can cut the time needed to award benefits from about four or five months to as short as a few weeks. Several ataxia diagnoses currently quality for expedited processing under the Compassionate Allowances program:

• ataxia telangiectasia
• Charlevoix-Saguenay spastic ataxia
• Friedrich's ataxia, and
• spinocerebellar ataxia.

If you've been diagnosed with any of the above ataxias, you don't need to do anything special on your disability application for your ataxia to be considered under the Compassionate Allowances program. Social Security should flag your application for expedited processing. However, you'll still need to have enough medical evidence to confirm the diagnosis at the time you submit your application—which typically means genetic testing.

How to Apply for Disability Benefits for Ataxia

Social Security makes it fairly easy to apply for disability benefits. If you have enough work credits to qualify for Social Security Disability Insurance (SSDI) or have income and assets low enough to qualify for Supplemental Security Income (SSI), you can submit your application online using the agency's web portal or by calling the national hotline at 800-772-1213 (TTY: 800-325-0778). You can also apply in person at your nearest Social Security field office.

Veterans who have service-connected ataxia may also qualify for disability compensation from the VA. For more information, see our articles on applying for Social Security disability benefits and filing for veterans' disability benefits.