• How likely are people with CMT to get Social Security disability benefits the first time they apply?

    Many people believe that it is very difficult to get disability benefits from the Social Security Administration (SSA). Some people even say: “Social Security always turns you down the first time.” Neither is true. Unfortunately, many people apply without any preparation or understanding of the process, resulting in a large number of initial turn-downs. Knowledge of the process can make it easier and increase the chances for approval.

    There are two primary programs for people with disabilities–Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI)–and the process of applying for both is very similar. SSDI (http://www.ssa.gov/disabilityssi/) is for workers and their dependents who have paid into the Social Security system through F.I.C.A. payroll taxes. In order to qualify, applicants have to supply a significant employment history to meet the minimum threshold, which varies depending on the age of the applicant. For most people, the rule of thumb is that they must have worked for any five of the past 10 years. SSI (http://www.ssa.gov/disabilityssi/ssi.html) is a needs-based program that aids elderly and disabled individuals with low incomes. In order to qualify, applicants must supply financial information instead of work history. SSI applicants cannot have more than $2,000 in assets, excluding their home and car.

    In addition to meeting the general requirements for either SSI or SSDI, anyone seeking disability benefits through the SSA must also be considered disabled according to the blue book, which is the SSA’s guidebook of all the conditions it considers potentially disabling. What does “disabled” mean? Whether it’s SSDI or SSI, disability is defined 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 concept 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, and diagnoses are only used to support the fact that you are unable to work in any substantial manner. Physical or mental symptoms that prevent working and last for at least one year must be present.

    For people dealing with CMT and other neurological disorders, the 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. According to SSA 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.

    Motor dysfunction is defined 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 of gait or station.”

    Applicants must match their specific case to the criteria in the corresponding listing for their condition in the blue book in order to receive benefits. CMT falls under the listing for Peripheral Neuropathies, which is found in Section 11.14 of the blue book. This listing requires disorganization of motor function in two extremities or either sensory or motor aphasia that causes ineffective communication. This means that someone applying for CMT must not be able to properly use two limbs such as an arm and a leg, OR the applicant must be unable to communicate by speaking, writing, or otherwise.

    Note that the agency is not looking for any particular diagnosis, but for motor function problems that interfere with major daily activities. The SSA needs to see evidence of actual symptoms that prevent a person from functioning. For a child, that means activities that are age-appropriate. For an adult, that usually means the ability to perform substantial work, i.e., full-time work.

    The inability to perform substantial work doesn’t mean that one can’t do anything except sell pencils on a street corner. Generally, the SSA looks to see if the applicant can do work suitable to his or her age, experience, training and education.

    Medical Records. Because the SSA will look to your medical records as the primary source of evidence of functional problems, it is important that your medical records be detailed and complete. Before you start the application process, 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 the agency to accept it as evidence of disability.

    If your records don’t list all your symptoms, ask your doctor to write an extensive explanation of your condition, itemizing his or her observations plus what you have reported to him or her 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 experience each day. In addition to stating the symptom, describe the severity and list its impact 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 CMTA Branch or your doctor’s office or others who have gone through the procedure. You can apply for Social Security Disability at any of the SSA’s field or branch offices. When you call the national number to make the appointment (800-772-1213), you can request the office for your appointment. 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. To start the application process, an applicant with CMT can apply online, by phone, or by visiting an SSA office. SSI applications must be completed at an SSA office. I recommend going into the office for two reasons.

    No matter how you apply, you’ll need to gather a number of supporting documents, including:

    • 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 a number of other documents that 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 they won’t agree to your own physician performing the exam.

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