Facts about Duchennes Muscular Dystrophy 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. Duchenne's muscular dystrophy is the most severe disorder in the group of disorder that make up muscular dystrophy. Muscular dystrophy causes damage to muscle fibers and makes the muscles progressively weaker.
2. Muscular dystrophy disorders in general cause weakness, coordination problems and loss of mobility that becomes progressively worse over time.
3. Duchenne's muscular dystrophy occurs in boys and is the most common type of muscular dystrophy occurring in children. It typically develops after two years old but before the age of three. Due to the progressive degeneration of the disease, most children are unable to walk by the time they are teenagers.
4. Symptoms of duchenne's muscular dystrophy involve large calf muscles that cause weakness in the lower legs, leading to falls, trouble running and jumping, walking with a waddling motion, and difficulty changing position from laying and sitting to standing. It may also include mild mental retardation.
5. The life expectancy for a child with duchenne's muscular dystrophy is before age 35, but usually by the 20s. Cause of death is most often related to complications from muscle weakness involving the respiratory system or heart.
6. Muscular dystrophy is caused by a genetic mutation that is inherited through family lines. Research has shown that the protein dystrophin, responsible for contributing to muscle development and strength, is associated with this mutation.
7. Duchenne's muscular dystrophy is inherited through the mother's genes, called X-linked recessive inheritance, because the mutated gene is located on the X-chromosome. One X-chromosome carrying the defect makes the mother a carrier with some mild symptoms, if any develop at all. Since women have two sets of X-chromosomes, and sons only inherit one set of X-chromosomes, a son may or may not develop the condition.
8. Treatment for duchenne's muscular dystrophy is aimed at slowing progression and maintaining mobility. This includes physical therapy, medications to help with muscle problems and deterioration, and devices such as wheelchairs and respirators.
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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