Can I Get Social Security Disability Benefits for Corticobasal Degeneration?

If you've received a diagnosis of corticobasal degeneration, you probably have lots of questions. If you're currently working, you're likely wondering how long you can continue to work with the condition. If you've stopped working, you might want to know if you qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) as a result of your diagnosis.

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

The symptoms of corticobasal degeneration gradually worsen over time, and the disease usually progresses over six to eight years. 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.

This list is not complete; you might have different or additional symptoms that your doctors find to be caused by your CBD.

Fast-Tracked Disability Decisions for Corticobasal Degeneration

Typically, when applying for disability 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 symptoms.

But the Social Security Administration (SSA) considers some conditions severe enough that the agency will award disability benefits for them after simply confirming the diagnosis. These conditions fall under what is 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.

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

You don't need to do anything special on your disability application for your CBD to be considered under the Compassionate Allowances program. Social Security should flag your application for expedited processing if you:

• claim CBD as a medical condition that prevents you from working and
• provide good enough medical evidence, including clinical notes from your medical providers and imaging showing a diagnosis of CBD.

Diagnosing and Documenting Corticobasal Degeneration

In addition to listing your CBD (and any other relevant medical condition(s)) 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 Record

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. The more specific you can be, the better.
• 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 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—your use of any of these shows 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 and following instructions.

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.

A Statement From Your Doctor

One item that can be very helpful to your disability claim for CBD is a "medical source statement" from your doctor. A medical source statement is especially helpful if it's from a doctor who has 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 your physical and mental limitations are. Any observations by your doctor should be in the medical statement—for example, whatever they can report from having seen you struggle to remember words or have difficulty getting off the examining table.
• Why you are taking the medications you're taking. Your doctor should be able to identify what, if any, treatments have been effective and whether you experience any side effects.

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 evidence.

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

The SSA can find you disabled "medically" or "vocationally." Medical disability means that your record documents symptoms or test results that Social Security has already determined are enough to find you disabled under its "listing" of disorders. If you're approved through a 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 Listing for Neurodegenerative Disorders

Social Security doesn't specifically name corticobasal degeneration as one of the "listed" disorders that gets you automatically approved. However, the agency does provide a listing (11.17) for a broader category: "neurodegenerative disorders of the central nervous system." Your CBD may qualify as medically disabling under that listing if you can show, through your medical record, that you either:

• Have so much difficulty moving two of your extremities (arms or legs) that you are 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 are 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.

A doctor who works for Social Security will use your medical record and doctor's statement to determine whether you meet either of the criteria in this listing.

Qualifying Vocationally: 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 would not 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 cannot 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 have 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.

How Do I Apply for Disability Benefits for CBD?

An easy way to start your disability application is to file online with the SSA. You don't have to finish the application all at once; just make sure that you keep track of the application 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 are 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 here. (Be aware that this option has been temporarily suspended in response to the ongoing COVID-19 pandemic.)

If you'd like help with your application, consider having a consultation with a legal professional to determine if your CBD qualifies for benefits.

_{Published September 10, 2021}