Can I Get Social Security Disability Benefits for Corticobasal Degeneration?

If you've received a diagnosis of corticobasal degeneration, you may be wondering how long you can continue to work with the condition or—if you've stopped working—whether you qualify for disability benefits. The Social Security Administration (SSA) operates two disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), for people who are unable to work full-time for at least one year due to symptoms from corticobasal degeneration.

What Is Corticobasal Degeneration?

Corticobasal degeneration (also known as CBD or cortical-basal ganglionic degeneration) is a rare disease that causes areas of the brain to shrink and nerve cells to degenerate and die over time. The disease affects the area of the brain that processes information as well as the brain structures that control movement. In the early stages of the disease, you might notice growing difficulty in movement as well as trouble concentrating.

The cause of corticobasal degeneration is unknown, but research suggests that a protein in the brain called "tau" may play a role. A buildup of tau in brain cells might lead to their deterioration and cause the symptoms of CBD. The signs and symptoms of CBD are similar to Parkinson's disease, and in fact, CBD is sometimes initially misdiagnosed as Parkinson's.

Symptoms of Corticobasal Degeneration

Symptoms of corticobasal degeneration generally begin around age 60. The disease usually progresses over six to eight years, with symptoms gradually worsening over time. Eventually, people with CBD can become unable to walk. Common symptoms include the following:

• difficulty moving on one or both sides of the body
• poor coordination
• trouble with balance
• stiffness
• abnormal postures of the hands or feet, such as a clenched fist
• painful muscle spasms and jerks
• trouble with thinking, speech, and language, and
• difficulty swallowing.

The above list isn't all-inclusive. Your doctors might find that you have different (or additional) symptoms caused by CBD. Symptoms tend to start "unilaterally," impacting only one side of the body, but can affect both sides as the disease progresses.

Fast-Tracked Disability Decisions for Corticobasal Degeneration

Typically, when applying for Social Security benefits, it's not enough to simply 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.

But Social Security considers some conditions so severe that the agency will award disability benefits for people who have them with simply a confirmed diagnosis. These conditions are set out in the Compassionate Allowances list and qualify for expedited decisions. 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.

The Compassionate Allowances list includes many rare diseases, cancers, and degenerative disorders that are considered exceptionally difficult to live with. Starting in 2020, corticobasal degeneration is one of the illnesses eligible for quicker processing under the Compassionate Allowances program.

You don't need to do anything special on your disability application to be considered under the Compassionate Allowances program. Social Security should flag your application for expedited processing if you list CBD as a disabling impairment and you provide the medical documentation that your doctors used to diagnose you with CBD.

Diagnosing and Documenting Corticobasal Degeneration

In addition to listing your CBD—and any other relevant medical conditions—on your application, you'll want to make sure Social Security has access to detailed medical records and a statement from your doctor.

Your Medical Records

When disability claims examiners review applications, they begin by examining your medical records. For CBD claims, they look for the following information:

• Clinical information showing neurological and cognitive decline. Your doctor's notes should show how long you've sought help for your symptoms and what doctors have told you about your condition. It's best if your doctors' notes record the progression of your symptoms.
• Imaging studies of the brain. You should have some kind of scans demonstrating "atrophy" (shrinking) of the front and temporal lobes of the brain. These scans could be computerized tomography (CT), magnetic resonance imaging (MRI), single-photon emission computerized tomography (SPECT), or positron emission tomography (PET) scans.
• An activities of daily living (ADL) report. An ADL report is very important because it documents any struggles you have with the everyday aspects of life, like doing laundry, cooking, cleaning, and bathing. An ideal ADL report will function as a diary, where you document any difficulties you have in tasks like walking, lifting, typing, or focusing your attention. The more specific you can be, the better.
• Results of mental status exams or neurological exams measuring cognitive changes. Mental examinations help doctors 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 if you've experienced a decline in your communication abilities.
• A list of prescribed medications. Medications for CBD are frequently used to treat muscle spasms and rigidity, such as clonazepam and baclofen.
• Documentation of assistive devices. It's important to let Social Security know if you're using canes, a walker, or a wheelchair. These show that you have difficulties with movement or balance.
• Referrals to specialized treatment. CBD patients often receive physical therapy to prevent muscle weakness and maintain range of motion, or speech therapy for help overcoming difficulties with language

Ideally, your medical records will have most, if not all, of the above information. But if you're missing anything, Social Security will consider whether there's a good reason why, such as not having insurance to pay for treatment.

Statements From Your Doctors

One item that can be very helpful to your disability claim for CBD is a medical source statement from your regular doctor. Medical source statements are particularly helpful when they come from doctors who have special knowledge about your history with CBD—for example, a neurologist you've seen for years.

If your doctor agrees to write a medical source statement, consider asking them to include the following information:

• Why your doctor diagnosed you with CBD. Your doctor should refer, whenever possible, to medical tests or imaging to support the diagnosis.
• When your doctor believes you first showed signs of CBD. Depending on how long you've known your doctor, this could be well before your formal diagnosis.
• What physical and mental limitations you have. Any observations by your doctor should be in the medical statement—for example, if they've seen you struggle to remember words or have difficulty getting off the examining table during appointments.
• What prescribed medications you're taking and why. Your doctor should be able to identify what treatments have been effective and whether you experience any side effects from the treatment.

Try to avoid having your doctor write a vague statement that just says that you're disabled. Social Security considers those opinions less valuable than opinions where doctors back up their statements with medical evidence.

How Social Security Determines Whether You're Disabled Due to CBD

Social Security can find you disabled "medically" or "vocationally." Medical disability means that your record documents symptoms or test results that the agency has already determined are enough to find you disabled under its listing of impairments. If you're approved through a medical-vocational allowance, that means Social Security has found that your particular limitations make it impossible for you to do any job.

Qualifying Under the Medical Listings

Depending on your symptoms, Social Security can evaluate your CPD under one of several listings for neurological disorders—listing 11.06 for Parkinsonian syndrome, listing 11.17 for neurodegenerative disorders, or listing 12.02 for neurocognitive disorders. These listings all require either significant difficulty using multiple extremities or significant cognitive decline, resulting in "marked" or "extreme" limitations in the following functional areas:

• understanding, remembering, or applying information (following instructions and carrying out assigned tasks)
• interacting with others (answering questions, responding to social cues)
• concentrating, persisting, or maintaining pace (avoiding distractions, completing tasks on time), and
• adapting or managing oneself (avoiding hazards, keeping up on hygiene).

You can think of a limitation as "marked" where you can perform the activity by yourself, but with great difficulty. "Extreme" limitations are in areas where you can't perform the activity by yourself at all, or only rarely.

If your CPD symptoms are mostly cognitive and you're living in a "highly structured setting" and are only "marginally adjusted" to disruptions in your daily routine, you may be able to meet listing 12.02 even if you don't have marked or extreme limitations—provided your symptoms are "serious and persistent" for at least two years and would be much worse without extensive support. Learn more in our article on disability benefits and neurocognitive disorders.

Getting Benefits If You Don't Meet the Medical Listing

Because corticobasal degeneration is a progressive disease, you might be at a stage where your limitations aren't yet severe enough to meet the requirements of the above listing. Nevertheless, your symptoms might be serious enough to prevent you from working. If this is the 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 whether you can work any jobs, Social Security will be interested in the ways that your symptoms affect your ability to work. For example, if you had a job as a server, but kept dropping dishes due to muscle jerks and spasms, you wouldn't likely have that job for very long. Another example is if you had a job where you had to keep track of an inventory of bicycles, but you kept losing count because you had trouble concentrating.

The process by which Social Security determines what you can and can't do in a work setting is called assessing your residual functional capacity (RFC). You aren't expected to do a job that's beyond your capabilities, mentally or physically.

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 done in the past five years. 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. And with corticobasal degeneration often beginning around age 60, even mild symptoms can help older applicants qualify for disability using Social Security's grid rules.

How Do I Apply for Disability Benefits for CBD?

An easy way to start your disability application is to file online. You don't have to finish the application all at once—just make sure that you keep track of the re-entry number given to you when you start the application so you can access it again if you need to come back to it.

You can also apply for disability benefits by phone by calling 800-772-1213 from 8 a.m. to 7 p.m. Monday through Friday. If you're deaf or hard of hearing, you can call the TTY number at 800-325-0778.

Finally, you can apply for disability benefits in person at your local Social Security field office. You can locate your field office by entering your ZIP code into the agency's office locator tool.

Social Security doesn't require you to have a lawyer to apply for benefits, but it can be very useful to have an experienced disability attorney helping you through the process, especially if you—like most disability applicants—need to appeal a denial. If you're considering getting legal representation for your claim, check out our article on how to find a disability lawyer.