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Disability/Insurance/ Legal Questions

  1. How likely is a person with CMT to get social security disability on their first application?
  2. I am fairly certain my young daughter has CMT, but I don’t want to have her tested and get a confirmed diagnosis if it will prevent her from getting disability income insurance when she grows up. Is getting a diagnosis likely to cause a problem?

Disability/Insurance/Legal Answers

1. How likely is a person with CMT to get social security disability on their first application?

There are a lot of myths and misinformation about disability benefits from Social Security and the application process. This is generally undeserved because, while the Social Security Administration (SSA) is an extremely large bureaucracy, the application process is generally straightforward and usually customer friendly.

First there are two primary programs for persons with disabilities, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), the former for workers and their dependents who have paid into the Social Security system through F.I.C.A. payroll taxes, the latter a program based on need. The process of applying for them is very similar.

There is a belief that it is very difficult to get disability benefits from Social Security. I've even heard it said, "Social Security always turns you down the first time." Neither is true. Unfortunately, many people apply without any preparation or understanding of the process and that does result in a large number of initial turn-downs, but knowledge of the process can make it easier and increase your chances of approval.

What does "disabled" mean? First, you need to know what standard Social Security uses to determine if someone is disabled enough to qualify for benefits. Whether it's SSDI or SSI, they define disability as: "the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months."

The key to all that legal definition is "the inability to engage in any substantial gainful activity." This means that Social Security is looking at functional problems. Lab numbers, names of diseases, diagnoses are only used to support the fact that you are unable to work in any substantial manner. There must be physical or mental symptoms that prevent working and will last for at least one year.

For people dealing with CMT and other neurological disorders, SSA looks for a condition, either static or progressive, that produces any type of neurological impairment. This can include weakness, spasticity, lack of coordination, ataxia, tremor, athetosis, or sensory loss. However, according to their regulations, "Documentation of motor dysfunction must include neurologic findings and description of the type of neurologic abnormality." They want to know what the symptoms are and what causes them.

They define Motor Dysfunction as: "Persistent disorganization or deficit of motor function for age involving two extremities, which (despite prescribed therapy) interferes with age-appropriate major daily activities and results in disruption of fine and gross movements or gait or station."

Note that they are not looking for any particular diagnosis. They are looking for motor function problems that interfere with major daily activities. They need to see evidence of actual symptoms that prevent someone from functioning. For a child, that is activities that are age appropriate; for an adult, that usually means ability to perform substantial work, i.e., full-time work.

That doesn't mean that you have to be so disabled you can't do anything except sell pencils on a street corner. Generally, they look to see if you are able to do work that would be suitable for you based on your age, experience, training, and education.

Medical Records. Because they need to see evidence of functional problems, it is important that your medical records be detailed and complete. Social Security looks to your medical records as the primary source of that evidence. Therefore, it is important that, before you even start the application process, you sit down with your medical records and look them over carefully. How detailed and complete are they? Are there statements and comments about your condition that support an inability to work? Did the doctor report your statements about problems and list all the symptoms you reported? With doctors being pushed to see more and more patients, sometimes records aren't as complete as they should be to support a disability claim. If a symptom or functional problem is not reported in the record, then it's going to be difficult to get them to accept it as evidence of disability.

If your records are not complete in listing your symptoms, ask your doctor to write an extensive explanation of your condition, itemizing his observations plus what you have reported to him that wasn't included in your record.

Symptom Diary. Although it may be too late for the initial application, start a symptom diary immediately. This is simply a journal in which you write down all the symptoms that you have experienced each day. In addition to stating the symptom, describe the severity, list what its impact was on you and your activities. For example: "So tired after trip to doctor, I had to nap for three hours." "I started to clean bathroom but was too tired to continue after cleaning the tub."

Find a Friendly Office. Social Security offices develop their own personalities. Some are more difficult to deal with than others. This is a good time to put your grapevine to work for you. Talk to others from your support group or your doctor's office or others who have gone through the procedure. You can apply for Social Security Disability at any of their field or branch offices. When you call the national number to make the appointment (800-772-1213) you can request which office you want the appointment made with. If you can find an office that has a reputation of being easier to deal with, go there. It really will improve your chances for approval.

Go to the Appointment Prepared. When you make your appointment to apply for Social Security, you will be given the option of applying by phone after they send you some forms to complete or of going into the office and applying in person. I recommend going into the office for two reasons. The Claim Representative is asked in their paperwork their impression of you and your functional abilities so if you have trouble walking or thinking clearly, the representative will observe and report it. Second, you are asked to provide original documents, such as your birth certificate. If you deliver it in person, they can see the original, photocopy it, and return it to you immediately so you don't risk losing valuable documents in the mail.

Take all the documents you are instructed to take. Normally this will include:

Proof of birth. If you were born in this country, they want to see an original or a certified copy of your birth certificate. (If you don't have one, go to the appointment; they will help you obtain one.)

Military discharge papers, if any.

Social Security card, or at least your Social Security number.

Proof of residency if a non-citizen.

If you're applying for SSI, take bank records, housing documents, deeds, leases, etc. and other financial documents showing your assets and income.

There are other documents you can take which, although not required, will help speed up the process:

Your Medical Records. Although they can get them from your doctors, it will speed up the process if you obtain copies of all your records and take them with you to the appointment.

Your symptom diary if you've been keeping one.

A letter from your doctor detailing your condition and presenting his or her observations about your ability to function at a job.

Third party testimony. These are letters from people you live or work with that detail their observations of you and what they have seen as your ability to function deteriorated. Anecdotes about problems they have observed can be very helpful. A statement from a co-worker or supervisor about increasing difficulties in performing your job can be especially persuasive.

The Consultative Exam. Occasionally an applicant will receive a letter announcing they have an appointment with a physician for a consultative exam. If you receive one, immediately call your Claim Representative, the name and number will be on the letter, and ask that your own doctor perform the exam instead. Consultative exams are notoriously brief and superficial and rarely provide support for a claim. Social Security's own regulations give preference to the attending physician's information so ask for a supervisor if you have trouble getting them to agree to using your own physician.

Spend Time Completing the Forms. When you first apply for Social Security disability, you will be asked to complete some initial forms. This is simply information about yourself, names and addresses of your medical providers so they can get your records, and a history of all the types of work you've done in the past fifteen years. If you're applying for SSI, there will also be forms to complete concerning your financial condition, what you own, what income you have, etc.

After a couple of weeks, you will receive more forms to complete, these dealing more specifically with your condition and its impact on your life. For people dealing with CMT symptoms these questionnaires are likely to be concerning fatigue you have and any pain you may be experiencing. They will also send you forms asking about your daily activities and how you accomplish the routine tasks of daily living. There may be other questionnaires as well based on what they find or don't find in your medical records.

You should spend some time and fill these forms out carefully and completely. Don't leave any blanks; write "N/A" if it doesn't apply to you. When filling them out, keep in mind your bad days, not the days when you're feeling fine.

It is best if you fill these forms out yourself. The Analyst reviewing the form will look at how you filled it out as well as what you say. Don't worry if you have to make corrections or changes. Just line them out and re-write it. You won't be graded on neatness, but make sure you print clearly enough so that it can be read. Use blue or black ink when completing the forms. You can also put information on additional sheets of paper if there's not enough room on the form, but be sure to clearly label the answer and make sure your name and Social Security number is on each sheet.

If you use a computer or typewriter or have someone fill it out for you because you are unable to write legibly, explain that on the form and tell why. If the form was especially difficult for you to complete, also explain that and include how long it took you to fill it out. Everything will be considered when reviewing your claim.

No one can guarantee your claim for benefits will be approved, but with preparation, thorough and complete medical records, and a focusing on functional symptoms, your claim will have a better chance of being approved.

[Jacques Chambers, who answered this question, is an independent benefits counselor. He spent twenty-five years in the health insurance industry and the last ten years assisting people with their public and private benefits. He was diagnosed with CMT in 1994. He can be reached at

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2. I am fairly certain my young daughter has CMT, but I don’t want to have her tested and get a confirmed diagnosis if it will prevent her from getting disability income insurance when she grows up. Is getting a diagnosis likely to cause a problem?

Regarding disability income insurance, it probably won't matter if your daughter's diagnosis is confirmed. Both group and individual plans typically have clauses or exclusions for pre-existing conditions, so coverage would be limited to disabilty arising from circumstances unrelated to CMT. There are so-called "specialty" insurers that insure people with pre-existing conditions, but the premiums can be fairly steep. Since disability income insurance isn't usually recommended until a person makes upward of $30,000, paying high premiums may not be very cost-effective.

For more information on group or individual disability insurance, will give you some of the basics, but you'd have to go to an agent and explain your situation to find out exactly what DI would cost and what exclusions would apply on any given policy.

As for Social Security Disablity Insurance (SSDI), you have to have worked long enough to qualify, and you have to meet the following strict definition of disability: “Disability under Social Security is based on your inability to work. We consider you disabled under Social Security rules if you cannot do work that you did before and we decide that you cannot adjust to other work because of your medical condition(s). Your disability must also last or be expected to last for at least one year or to result in death.”

Supplemental Security Income (SSI) is different. SSI recipients still have to qualify as disabled, but SSI is based on financial need. You can get more information at

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