Can You Get Disability Benefits for Ataxia?

Persistent ataxia is a lack of coordination caused by damaged nerve cells in your brain. People with ataxia can have trouble standing, balancing, walking, and talking.

What Is Ataxia?

Ataxia (ay-TAK-see-uh) is a degenerative disease of your nervous system, a network of cells that carries messages to and from your brain to the rest of your body. When ataxia happens, it means that the part of your brain responsible for coordinating movement has been damaged. The word ataxia actually means "without coordination."

When medical professionals use the word "ataxia," it can be confusing, because they use the word to describe both the symptom of being uncoordinated as well as a group of diseases that cause a lack of coordination. Your doctor should be able to help you determine if your ataxia is a disease in itself, or a symptom of something else (such as stroke, TBI, alcoholism, or multiple system atrophy).

What Causes Ataxia?

The part of your brain that controls muscle coordination is called 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.

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 of ataxia include viral infections, autoimmune diseases such as multiple sclerosis, problems with your thyroid (the gland that helps regulate your body functions), and alcohol or drug intoxication.

Some ataxias, and conditions that cause ataxia, are hereditary. If you have one of these conditions, 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. If ataxia is preventing you from doing tasks that require you to maintain coordination, you may have trouble holding a job.

What Are the Symptoms of Hereditary Ataxia?

Different gene defects cause different types of ataxia, most of which are "progressive," meaning the symptoms worsen with time. While each type of ataxia causes poor coordination, the specific signs and symptoms vary. Here are some of the most common hereditary ataxias:

• 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.
• Congenital cerebellar ataxia results from damage to the brain that is present at birth.

Some symptoms are common to all of the above hereditary ataxias. These symptoms include:

• 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
• abnormalities in eye movement, such as losing focus.

A lot of ataxia symptoms can mimic being drunk—slurring speech, stumbling around, falling, and dropping things. If you're 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.

Fast-Tracked Disability Decisions for Hereditary Ataxias

When applying for disability benefits, it's typically not enough to have a medically diagnosed condition. In most disability applications, the focus is on gathering enough information for the claims examiner to determine whether you're capable of working despite your health symptoms.

But the Social Security Administration ("Social Security") considers some conditions severe enough that the agency will award disability benefits for them after simply confirming the diagnosis. These conditions fall under what's called the "Compassionate Allowances" process. 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 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 as long as you provide good enough medical evidence that your ataxia prevents you from working.

How Social Security Determines If Your Ataxia Is Disabling

Social Security can find you disabled "medically" or "vocationally." Medical disability means that your medical record documents symptoms or test results that Social Security has already determined are enough to find you disabled under its "listing" of disorders. Or, if Social Security approves you through a vocational allowance, that means the agency has found that your particular 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, for "Neurodegenerative disorders of the central nervous system," mentions Friedreich's ataxia and spinocerebellar degeneration by name, but it covers all of the hereditary ataxias.

Your ataxia may qualify you for disability under this listing if you can show, through your medical record, that either one of the following is true:

• You have so much difficulty moving two of your extremities (arms or legs) that you're extremely limited in your ability to:
  • stand up from a seated position
  • balance while standing or walking, or
  • use your upper extremities (arms, hands, or fingers).

Or

• You're slightly less limited physically, 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: Getting Benefits 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 yet severe enough to meet the requirements of the above listing. Still, your symptoms might be serious enough to prevent you from working any longer. In this case, Social Security 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, Social Security 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 feel shortness 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.

You aren't expected to do a job that's beyond your capabilities, mentally or physically. The process Social Security 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:

• walk and stand for two hours of an eight-hour day
• sit for six hours of an eight-hour workday
• lift and carry no more than 20 pounds occasionally
• grip, handle, or finger items occasionally, and
• 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. For more information, see our article on getting vocationally approved for disability benefits.

Evidence Needed to Diagnose and Document Hereditary Ataxia

Having medical documentation of your ataxia is very important. When disability claims examiners review applications, they start by looking at your medical record. This includes any visits to your doctor's office, your doctor's notes, and any testing 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.

For ataxia claims, Social Security will look for the following information:

• 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, Social Security will consider whether you have a good reason why, such as not having insurance to pay for treatment.

How to Apply for Disability Benefits for Ataxia

If you're applying for Social Security disability insurance (SSDI), you can file your entire claim online on Social Security's website. (For SSDI, you must have enough work credits to qualify.) If you're not comfortable online, you can call Social Security at 800-772-1213 to start your claim.

If you don't have enough work credits and you have low income, you can apply for SSI. Some individuals filing for SSI only can't file the whole application online, but they can get started on Social Security's website. For more information, see our article on applying for Social Security disability benefits.

_{Updated November 1, 2022}