Facts about Narcolepsy 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) Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness (EDS) that occurs no matter how well rested the person is, and sudden 'attacks' of sleep that happen during the day, sometimes at inopportune times such as while at work, watching TV, at school, or even while talking to someone or making love!
2) Cataplexy, a sudden loss of muscle tone, is thought to affect nearly 70 percent of narcolepsy sufferers. It can last a few minutes or only a few seconds, and may only happen once or twice a year or several times a day depending on the person.
3) Although the cause of narcolepsy is not known, one theory is that there may be triggers, such as an abnormal immune response, that cause damage to brain cells that make hypocretin, a chemical that regulates REM sleep and staying awake. Those with narcolepsy have low levels of hypocretin. It may also be genetic.
4) Narcolepsy affects nearly one out of every 2,000 people in the United States, and affects men more often than women.
5) It is fairly easy to initially diagnose narcolepsy based on the report of loss of muscle tone and EDS, and in addition there are various tests that can help further diagnose. From a questionnaire called the Epworth Sleepiness Scale, a sleep measurement device called a Actigraphy, and a heart, brain, eyes, breathing and muscle monitor called a polysomnogram, to a multiple sleep latency test involving sleep examinations, there are many ways to help rule out other issues and make a direct diagnosis.
6) Narcolepsy can be dangerous and even fatal. This is not due to any health complications, but rather is due to the potential of falling asleep while driving or operating heavy machinery.
7) Narcolepsy is associated with impotence and low sex drive, and may affect personal relationships.
8) There is no cure for narcolepsy though antidepressants and stimulants may be prescribed to help manage symptoms. Sodium oxybate is sometimes prescribed to help manage cataplexy.
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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