Social Security Disability Benefits for Pick's Disease and Other Rare Neurodegenerative Diseases
Those with Pick's disease, corticobasal degeneration, progressive supranuclear palsy, or CJD can usually qualify for Social Security disability benefits.
Neurodegenerative diseases are those that cause an increasing loss of the structure or the function of neurons, brain cells that use electrical and chemical signals to tell the body what to do. When these neurons are damaged, wrong signals are sent to the brain, and in turn to the body.
Some of the more common neurodegenerative diseases are Parkinson’s and Alzheimer’s. However, there are numerous other rare and disabling neurodegenerative diseases, many of which will entitle people to Social Security disability benefits (SSDI) or Supplemental Security income (SSI).
Rare Neurodegenerative Diseases
Here are some examples of rare neurodegenerative diseases that may qualify for disability benefits, with a brief description of their symptoms.
Pick's disease is a rare neurological disorder that causes dementia. The average age of onset for Pick's is 54, though some individuals develop symptoms as early as 20. Unlike Alzheimer’s, the earliest symptoms of Pick's is not memory loss but changes in personality and behavior.
Because of the areas of the brain affected by Pick disease, patients often exhibit disturbing behaviors such as:
- difficulty with personal hygiene
- compulsive, repetitive, or inappropriate behavior
- difficulty in social functioning
- inability to show concern, sympathy, emotional warmth, or empathy
- apathy about events or the environment
- mutism or difficulty with speaking or understanding others, and
- memory loss (later stages).
Individuals with Pick's disease may also develop physical problems that include loss of muscle tone, weakness, and difficulty with movement and coordination.
Creutzfeldt-Jakob disease (CJD) is a rare degenerative brain disorder that causes dementia and eventually death. CJD is similar to Alzheimer’s but progresses much more rapidly. Patients seldom live more than a few months after their diagnosis. Symptoms for CJD include:
- changes in personality
- anxiety and depression
- memory loss
- difficulty sleeping
- difficulty with chewing and swallowing, and
- blurry vision.
Scientists believe CJD is caused by abnormal proteins called prions. In their normal state, these proteins are harmless; however, when they are improperly formed, they become infectious. CJD can be contracted spontaneously (no known cause—the most common way), through a genetic mutation (inherited), or through exposure to contaminated tissue (such as unclean surgical tools.) “Mad cow” disease is a variant form of CJD.
Corticobasal degeneration (CBD) is a rare progressive brain disorder that causes nerve cell loss and shrinkage (atrophy) in many areas of the brain. The disease usually starts around the age of 60. Symptoms may appear on only one side of the body and then become bilateral (on both sides) as the disease progresses. CBD is generally fatal within six to eight years after symptoms begin. Symptoms of CBD include:
- poor coordination
- muscle rigidity
- problems with balance
- abnormal muscle positioning, and
- problems with speech, swallowing, and speaking.
Scientists currently don’t know what causes corticobasal degeneration.
Progressive Supranuclear Palsy (PSP)
PSP is a rare brain disorder that progressively worsens with time. Symptoms include difficulty with gait and balance, eye movement, and with the thinking process. Patients frequently are unable to maintain eye contact when interacting with people, so others may consider them as hostile or rude. It is also not uncommon for people with PSP to have significant mood changes and to exhibit sudden and unprovoked bouts of laughter, anger, or tears.
There is no treatment for PSP, but studies have shown that some medications used to treat Parkinson’s may be helpful for PSP. PSP is not fatal and many patients are able to live years after diagnosis as long as they receive care on a regular basis.
Getting Disability for a Rare Neurodegenerative Disease
The basic requirement for disability benefits is that the disability applicant's medical conditions are so severe that they prevent the applicant from working on a regular and sustained basis (full-time) for at least twelve months or is expected to result in the applicant's death. For most people with neurodegenerative diseases, these initial requirements are easy to meet.
SSA will then look at its Listing of Impairments to see if the applicant is eligible for automatic approval of benefits. The Listing contains a selection of medical conditions that are so severe that the SSA will approve a claim based on a listed condition automatically. Here are the listings that pertain to neurodegenerative diseases.
Listing 11.17, Degenerative Diseases Not Listed Elsewhere
Some more common neurological degenerative diseases (such as Parkinson’s and Alzheimer’s) have their own listings; however, there are myriad other disabling neurodegenerative diseases that are not named in the listings. To handle this, the SSA has established this “catch-all” listing for people who suffer from less common, yet equally disabling, neurodegenerative diseases.
To be approved under this listing, your medical condition must cause one of the following:
- paralysis, paresis (slight paralysis), tremors, or ataxia (inability to coordinate muscle movements) that cause significant trouble standing and walking a reasonable distance or with using the arms for daily activities including fine motor skills and lifting and carrying items, OR
- chronic brain syndrome that has altered your cognitive abilities to the extent that it has caused difficulty with short- or long-term memory, personality changes, emotional lability (instability), or a drop in your I.Q. that has led to significant problems in at least two of the following:
- doing your activities of daily living (grocery shopping, cooking, and so on)
- your social functioning (getting along with others)
- your concentration, persistence, or pace (getting things done in a normal amount of time), and/or
- episodes of decompensation (frequent worsening of symptoms), OR
- chronic brain syndrome that has lasted at least two years, has limited your ability to work, and is controlled through medication or therapy (as prescribed by a doctor) and results in one of the following:
- recurrent and significant decreases in your ability to function due to episodes of decompensation
- being unable to adjust to even minimal increases in mental demands or changes in your environment without triggering decompensation, or
- the current and ongoing need to live in a highly supported living situation.
These listing requirements are complicated, so you should review them with your treating physician(s) to see if you will qualify under them.
Getting Benefits if You Don't Meet a Listing
If your neurodegenerative disease doesn't meet the listing requirements, you can still get approved for disability benefits if the SSA decides your symptoms are so severe that you can't do any kind of work. To determine this, the SSA prepare a physical residual functional capacity assessment (RFC) with the records you submitted. Because these diseases impact mental wellness, the SSA will likely also prepare a mental residual functional capacity (MRFC) assessment. Your RFCs will show the most you can do (both physical and mental) on a regular and sustained basis (full-time).
A physical RFC will look to see how your symptoms impact your ability to do the physical parts of a job like:
- lifting, and
A mental RFC will look to see how your symptoms impact your ability to do the mental parts of a job like:
- getting along with others
- remembering and following simple instructions
- being reliable, and
- being able to get work done in a normal amount of time.
The SSA will then use their RFC assessments to determine if you have the physical and mental RFC to work. If you don't, you will be approved for benefits. For example, your neurodegenerative disease may cause physical symptoms like balance problems or weakness in your arms. Additionally, you may experience mental symptoms like short-term memory problems or difficulty getting along with your co-workers. If your limitations are severe enough, the SSA will find your disabled.
You should also ask the doctors who treat you to prepare both a physical RFC form and a mental RFC form for you. If your doctors submit evidence that you have significant mental and physical limitations, you are more likely to be approved. Make sure the doctors who prepare your RFCs are specialists in treating people with neurodegenerative disorders (such as neurologists).
How to Contact An Attorney
Many neurodegenerative disorders are so disabling that they are eligible for an automatic approval of benefits. To learn the quickest way to get approved, it may be helpful to talk to an experienced disability attorney.