Tuberous Sclerosis Awareness Month

May has been denoted as Tuberous Sclerosis Awareness Month, but for those living with this rare genetic disorder, every day is a challenge. The fact that most people, including those who work for the Social Security Administration's (SSA) Disability Determination Services (DDS), are not familiar with the disorder and the affects it has on those who have it, can make applying for Social Security Disability (SSD) with a diagnosis of Tuberous Sclerosis an uphill battle.

The SSA conducts ongoing hearings at which testimony is heard from the public, disabled individuals, and expert witnesses in the medical community as part of the Compassionate Allowances (CAL) program. Under CAL, the SSA approves rare, terminal and other obviously disabling conditions for inclusion on a list of disabilities that qualify for expedited claims processing, review and approval procedures.

While Tuberous Sclerosis has been included in past CAL hearings, it has yet to be approved for the CAL program. Unfortunately, this means individuals who file for SSD benefits with the diagnosis are subject to the same potentially lengthy wait for benefits and rigorous review procedures as any non-CAL disability applicant.

The average applicant for SSD waits at least three months for their initial application to be reviewed by the DDS. Some 70 percent of applicants are denied during the first review and must then proceed through a reconsideration review by the DDS, and for some, an appeal hearing conducted by an Administrative Law Judge, after being denied benefits upon the second review. This entire process can take anywhere from several months to more than two years.

To increase your chances of being approved for SSD benefits during the initial review of your application, you should painstakingly prepare your application and all of the documentation supporting your claim for disability due to Tuberous Sclerosis and its complex symptoms. Although collecting all of the medical documentation necessary for substantiating a disability can require significant time, energy and effort, it can pay off in the end, making it less likely you’ll be denied benefits during the initial review of your claim.

The documentation contained within your claim should include all of your medical records; including the tests, lab work and other diagnostic procedures which have been done. Statements from all of your doctors who have treated the condition should also be present. The more detail you’re able to include in your application, the more likely you are to be approved for benefits during the first review by the DDS.

If you are applying for disability benefits on behalf of a minor who has been diagnosed with Tuberous Sclerosis, then you can get help from a social worker or a representative from the Department of Family and Child Services in your home state. Having the assistance of a Social Security lawyer who is familiar with the application process can also be of significant benefit.

This is especially true if you are an adult applying for SSD benefits for the first time as a result of you Tuberous Sclerosis worsening to the point that you’re now unable to work (whether it be skilled work or sedentary work. First-time, adult applicants with Tuberous Sclerosis are more likely to be denied benefits during the initial review of their SSD application.

A Social Security attorney can assist you in getting the appropriate medical tests and other procedures done for satisfying the SSA’s requirements for proving your disability. They can also review your application and ensure it is as thorough as possible, thereby increasing your chances of receiving benefits without further delays.