Facts about Huntington's disease and Filing for Disability
These selected pages answer some of the most basic, but also some of the most important, questions for individuals who are considering filing a claim for disability benefits.
Facts about the condition
1. Huntington's disease is a genetic condition that causes progressive degeneration of nerve cells in the brain. Anyone who has the mutation will eventually present symptoms of the disease, if they live long enough for its onset to occur.
2. The condition most commonly develops in middle age. Typically, the disease progresses more quickly and causes more severe symptoms when it begins in someone's younger years. Sometimes, but not often, the disease may develop in children or infants.
3. The degeneration of nerve cells in the brain causes problems with physical and mental capabilities. This includes symptoms of uncontrolled and involuntary facial and body movement, personality changes and mental illness, and cognitive problems such as learning, decision making and answering questions.
4. In younger people, additional symptoms include rigid muscles, tremors, slow movement and sometimes seizures.
5. In later stages the symptoms become more severe and involved, such as severe balance and coordination problems, sudden spasms of movement throughout the whole body and also the eyes, speech problems, difficulty swallowing and dementia.
6. Depending on the progression of the condition, death can occur 10 to 30 years from the onset of symptoms, with quality of life different for each individual. Regardless of signs and symptoms throughout the disease, typically vital functioning eventually degenerates. Cause of death is also often related to a bad fall or illness. Since depression is common among Huntington's patients, suicide is sometimes a factor.
7. Genetic testing is the best way to determine if symptoms are caused by Huntington's. If one of the individual's parents has had Huntington's, the individual has a 50-50 chance of having the gene. Therefore, genetic testing can be done at any age to determine if the genetic mutation is present.
8. Genetic testing is emotionally tricky, since some people may feel tormented wondering if they will contract the condition, whereas others may feel burdened by the knowledge that they will sometime develop it. Genetic counseling is offered before and after the testing to help with this difficult decision and knowledge.
Qualifying for disability benefits with this condition
Whether or not you qualify for disability and, as a result, are approved for disability benefits will depend entirely on the information obtained from your medical records.
This includes whatever statements and treatment notes that may have been obtained from your treating physician (a doctor who has a history of treating your condition and is, therefore, qualified to comment as to your condition and prognosis). It also includes discharge summaries from hospital stays, reports of imaging studies (such as xrays, MRIs, and CT scans) and lab panels (i.e. bloodwork) as well as reports from physical therapy.
In many disability claims, it may also include the results of a report issued by an independent physician who examines you at the request of the Social Security Administration.
Qualifying for SSD or SSI benefits will also depend on the information obtained from your vocational, or work, history if you are an adult, or academic records if you are a minor-age child. In the case of adults, your work history information will allow a disability examiner (examiners make decisions at the initial claim and reconsideration appeal levels, but not at the hearing level where a judges decides the outcome of the case) to A) classify your past work, B) determine the physical and mental demands of your past work, C) decide if you can go back to a past job, and D) whether or not you have the ability to switch to some type of other work.
The important thing to keep in mind is that the social security administration does not award benefits based on simply having a condition, but, instead, will base an approval or denial on the extent to which a condition causes functional limitations. Functional limitations can be great enough to make work activity not possible (or, for a child, make it impossible to engage in age-appropriate activities).
Why are so many disability cases lost at the disability application and reconsideration appeal levels?
There are several reasons but here are just two:
1) Social Security makes no attempt to obtain a statement from a claimant's treating physician. By contrast, at the hearing level, a claimant's disability attorney or disability representative will generally obtain and present this type of statement to a judge.
Note: it is not enough for a doctor to simply state that their patient is disabled. To satisy Social Security's requirements, the physician must list in what ways and to what extent the individual is functionally limited. For this reason, many representatives and attorneys request that the physician fill out and sign a specialized medical source statement that captures the correct information. Solid Supporting statements from physicians easily make the difference between winning or losing a disability case at the hearing level.
2) Prior to the hearing level, a claimant will not have the opportunity to explain how their condition limits them, nor will their attorney or representative have the opportunity to make a presentation based on the evidence of the case. This is because at the initial levels of the disability system, a disability examiner decides the case without meeting the claimant. The examiner may contact the claimant to gather information on activities of daily living and with regard to medical treatment or past jobs, but usually nothing more. At the hearing level, however, presenting an argument for approval based on medical evidence that has been obtained and submitted is exactly what happens.
About the Author: Tim Moore is a former Social Security Disability Examiner in North Carolina, has been interviewed by the NY Times and the LA Times on the disability system, and is an Accredited Disability Representative (ADR) in North Carolina. For assistance on a disability application or Appeal in NC, click here.
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