Can I Get Social Security Disability Benefits for Progressive Bulbar Palsy?

Progressive bulbar palsy (PBP) is a severe neurological condition that involves the brain stem, the part of the brain needed for swallowing, speaking, chewing, and other functions. PBP is part of a group of neurological disorders known as motor neuron diseases, in which the nerves of a part of the brain are damaged. Many experts now consider PBP to be a variant of the more commonly known condition of ALS (also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease). In fact, some people with PBP do eventually develop the more widespread symptoms of ALS.

What Are the Symptoms of Progressive Bulbar Palsy?

Some of the common symptoms of progressive bulbar palsy include difficulty swallowing, a weakened gag reflex, weak jaw and facial muscles, progressive loss of speech, and weakening of the tongue. Because PBP patients can have difficulty swallowing, they sometimes accidentally inhale food and saliva into the lungs, which can lead to choking or pneumonia. Additionally, some people with PBP have noticeable weakness in their arms and legs or outbursts of laughing and crying (called "emotional lability" or the "pseudobulbar affect").

Diagnosing Progressive Bulbar Palsy

Progressive bulbar palsy can be a difficult-to-diagnose condition, with no single test or procedure that can confirm the diagnosis. Patients with myasthenia gravis, multiple sclerosis, a history of stroke, or other neurological conditions can have similar symptoms, so doctors need first to rule out those conditions before diagnosing PBP.

A doctor will make a diagnosis of PBP largely based on a person's symptoms and tests that show how well the nerves are working, such as an electromyography (EMG) or nerve conduction study (NCS). Neurologists who specialize in diagnosing and treating motor neuron disorders and ALS are usually needed to diagnose PBP.

The Prognosis for Progressive Bulbar Palsy

Sadly, as with ALS, there is no cure for PBP, and the symptoms often get worse with time. The goal of treatment is to make people more comfortable and help them cope with the symptoms. For instance, feeding tubes help with eating, devices help with talking, and medicines can treat muscle spasms, weakness, drooling, sleep problems, pain, and depression.

Does Progressive Bulbar Palsy Qualify Me for SSDI?

Despite the devastating nature and poor prognosis of this disease, you still need to provide evidence and meet certain requirements to get approved for Social Security disability insurance (SSDI). As with other severe medical conditions, the key factors are: what types of symptoms and limitations is the condition causing, and do those symptoms and limitations cause you to be unable to work a full-time job on a consistent basis?

A condition as severe and devastating as PBP seems like it would make a person disabled from working any type of full-time job, especially as the condition progresses and worsens. Unfortunately, getting disability benefits is never as simple as common sense might suggest. Generally, patients with PBP have two paths to establish disability from PBP.

Meeting a Disability Listing for Progressive Bulbar Palsy

After the Social Security Administration (SSA) sees that you're not working and agrees you have an impairment (a loss of function) that is at least severe, Social Security will determine if your condition meets or "equals" the requirements of a "listed impairment." Listed impairments are medical conditions that Social Security considers especially serious. The SSA maintains a "Blue Book" of listing criteria that the agency uses to evaluate these conditions.

A common misconception, however, is that if you have a diagnosis that's a listed impairment, then you automatically meet the listing and are therefore disabled. However, each listing has specific and rigid medical criteria that must be satisfied for you to be found disabled under the listing. PBP is no exception.

Social Security generally categorizes progressive bulbar palsy under the neurological disorders section of the impairment listings. (But if PBP has caused breathing problems, Social Security might also evaluate the impairment under the relevant respiratory disorder listings.)

While there's no specific neurological listing for PBP by itself, Social Security will generally evaluate it under listing 11.22, for motor neuron disorders (other than ALS). It can also qualify under listing 11.17, for neurodegenerative disorders (the listing requirements for 11.17 are just a subset of the requirements for listing 11.22).

Listing 11.17. You can get disability under the listing for motor neuron disorders (listing 11.22) if your symptoms and limitations meet one of the following three sets of systems below.

• An inability to control the movement of your legs, your arms, or an arm and a leg, resulting in extreme difficulty in the ability to:
  • balance while standing or walking
  • stand up from a seated position, or
  • use your arms.
• A "marked" (serious) limitation in physical functioning, as well as serious cognitive limitations in:
  • using information and learning new things
  • interacting with others and asking for help
  • finishing tasks and attending work regularly, or
  • managing yourself (responding to demands appropriately and adapting to change).
• Weakness in the bulbar muscles (responsible for controlling the tongue, jaw, and throat) that results in breathing or swallowing impairments requiring either:
  • a ventilator for acute respiratory failure, or
  • supplemental nutrition, either via a gastric feeding tube or intravenously, via a central venous catheter.

Proving you meet the listing. The only way to prove that your condition meets the above requirements is by providing substantial medical records from your treating doctor(s) that show you meet these physical and/or mental criteria. That's why it's important to make regular appointments with your doctor (preferably a neurologist) and to tell your doctor about all of your limitations. In some instances, you might have to ask your doctor to provide a RFC form, report, or letter that describes aspects of your diagnosis and impairment that might not be noted in detail in the medical records themselves.

Can I Get My Claim Expedited If I Meet the Listing?

If your progressive bulbar palsy meets the requirements of listing 11.17 or 11.22 (above), chances are you'll also qualify to receive your benefits much sooner under the Compassionate Allowance program. Social Security uses its Compassionate Allowances list (CAL) to quickly identify the most serious illnesses or conditions that will qualify an individual for disability (including PBP, ALS, other types of brain conditions, and advanced cancers).

The Compassionate Allowance program allows benefits to be awarded and paid quickly, to ensure that disabled claimants are able to start receiving monetary payments before their conditions progressively worsen. When you file your claim, if you alert Social Security that you think you have a condition that qualifies as a Compassionate Allowance, this will flag the claim for a special type of review, with an expedited determination of disability.

Progressive bulbar palsy qualifies as a compassionate allowance if it meets either the neurodegenerative listing (11.17) or the motor neuron listing (listing 11.22).

Can I Get Disability Benefits for PBP Without Meeting the Listing?

If your symptoms haven't progressed far enough to meet the requirements of a listing, the other path to being found disabled is to prove that you're suffering from such serious and significant symptoms and limitations that there are no jobs you can do full-time. This path requires you to show that you don't have the physical capacity (ability) for any level of work or that you don't have the mental capacity to work even a simple, unskilled job. You do this by providing medical evidence and past employment details, as well as testimony and other statements.

For example, you might not yet have a severe mental limitation or a severe physical limitation that meets a listing. But, you might still find you can no longer work because you have trouble speaking and you cry or laugh at inappropriate times, particularly when you're under stress. Depending on your age and your abilities, this might be enough for the SSA to find you can't work.

Because of the progressive and deteriorating nature of PBP, simply having a diagnosis will eventually make someone disabled, but if you're not there yet, you'll need to submit well-documented medical records and other evidence showing that your symptoms are already keeping you from being able to keep a job—in other words, that you're already disabled. For more information, see our article on getting disability benefits based on a medical-vocational allowance.

How Can I Apply for Disability Benefits Based on PBP?

If you're applying for Social Security disability insurance (SSDI), you can file your claim online on Social Security's website. Most individuals filing for SSI only can't file the entire application online, but they can get started on Social Security's website.

If you'd rather not file online, you can call Social Security at 800-772-1213 to start your claim. You can also set up an appointment by contacting your local field office (use the Social Security field office locator and enter your zip code to find your field office). For more information on applying for either SSDI or SSI, see our article on applying for Social Security disability benefits.