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Charcot-marie-tooth disease and Filing for Disability
Charcot-Marie-Tooth disease is a valid medical condition for a disability application with Social Security. The condition falls under the classification of neurological impairments. While it is not specifically mentioned in the SSA Blue Book impairment listings, it is considered a peripheral neuropathy and addressed under impairment listing 11.14 - Peripheral Neuropathy.
Social Security will use this listing to determine if your Charcot-Marie-Tooth disease is listing level if you are able to meet the peripheral neuropathy listing. If you have significant ongoing problems with your ability to walk, stand, get up from a seated position, or difficulties using your arms or hands, you may meet the listing and this will medically qualify you for disability.
Charcot-Marie-Tooth, medical records, and Work history
If you do not meet the listing you must prove that you can no longer perform SGA level work activity (earning this much) because of your condition. You can accomplish this through A) medical records that include evidence of your diagnosis of Charcot-Marie- Tooth disease along with objective testing such as a nerve conduction study, nerve or muscle biopsies, or genetic testing, and B) the information you provided with your vocational work history; specifically, the types of work you have done, the functional requirements of each job, as well as the work skills you have that could possibly transition you into some other type of work. The more information you provide to the SSA at the beginning of the application process, the more quickly you might be approved.
If you are able to show that your Charcot-Marie–Tooth disease is so limiting that it precludes any of your past jobs and your job skills are not transferable, Social Security may be able to approve you through a medical vocational allowance. Medical vocational allowance rules allow the disability specialist to consider your limitations along with your age, education, and skill transferability to approve you 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.
Qualifying for disability benefits with Charcot-Marie-Tooth
Whether or not you qualify for SSD or SSI 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 disability 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.
Facts about the condition
1. Charcot-Marie-Tooth (CMT) disease is a group of related neurological disorders inherited through genetics. It affects the nerves, muscle bulk and strength, and sensation in the feet and legs. Occasionally it also affects the hands and arms as the disease progresses.
2. Charcot-Marie-Tooth (CMT) is named for Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth, who all originally described the condition. However, it has several other names: Hereditary Motor and Sensory Neuropathy (HMSN), Hereditary Sensorimotor Neuropathy (HSMN), and Peroneal Muscular Atrophy.
3. In individuals who have Charcot-Marie-Tooth disease, the nerves in extremities like the feet, lower legs, hands and forearms do not send proper signals to the brain, causing loss of sensation and muscle.
4. Charcot-Marie-Tooth causes weakness, muscle loss, loss of sensation, numbness and pain, and changes the structure of the foot to have extremely high arches and curled toes, leading to awkward gait, tripping, and difficulty lifting the foot.
5. Charcot-Marie-Tooth is a progressive disorder; symptoms continue to worsen and complications increase as individuals with the condition age, and also with significant emotional or physical stress. Progressed stages can include other areas of the body, causing trouble breathing, speaking and eating, and causing hearing and vision loss.
6. The condition usually first becomes apparent in teenagers and young adults. Initial symptoms tend to be foot abnormalities and difficulty walking. Specific symptoms, severity and progression all vary among different individuals.
7. Charcot-Marie-Tooth can be confirmed through testing. Genetic testing is the only way to be certain of the condition, although some types have not been identified in genetic makeup. Diagnosis is also made through taking a biopsy of a peripheral nerve and examining it for markers specific to CMT.
8. Tests also help show the extent of damage from the condition. Nerve conduction tests show how quickly and strongly nerves and the brain exchange signals, while electromyography (EMG) tests look at the affected muscles.
9. Charcot-Marie-Tooth disease is a lifelong and currently incurable condition.
10. There are a variety of ways to help manage Charcot-Marie-Tooth. Prescription drugs can help with pain caused by nerve damage. Physical and occupational therapy, orthopedic devices, stretching and exercising, and keeping good foot care can all help delay nerve damage and muscle loss and prevent injury.
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For the sake of clarity, SSDRC.com is not the Social Security Administration, nor is it associated or affiliated with SSA. This site is a personal, private website that is published, edited, and maintained by former caseworker and former disability claims examiner, Tim Moore, who was interviewed by the New York Times on the topic of Social Security Disability and SSI benefits in an article entitled "The Disability Mess" and also by the Los Angeles Times on the subject of political attempts to weaken the Social Security Disability system.
The goal of the site is to provide information about how Social Security Disability and SSI work, the idea being that qualified information may help claimants pursue their claims and appeals, potentially avoiding time-consuming mistakes. If you find the information on this site helpful and believe it would be helpful to others, feel free to share links to its homepage or other pages on website resource pages, blogs, or social media. Copying of this material, however, is prohibited.
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