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| The national Tourette Syndrome Association (TSA) submitted comments to the Social Security Administration (SSA) and testified during the Commissioner’s hearing on Compassionate Allowance for Rare Diseases, December 5, 2007. As a follow up to that hearing, using all the testimonies we received from our members, we have submitted our findings on the Social Security Benefits application process for those with Tourette Syndrome (TS). In addition, we provided some suggestions to the SSA on how to best process claims. Read our October 15, 2008 letter to Michael J. Astrue, Commissioner of Social Security.
The TSA believes, TS as a neurological disorder, causes significant health impairments among the more severely affected. We recommend that TS be recognized officially as an eligible disorder under the category of neurological disorders to receive Social Security Disability benefits. The Social Security Administration (SSA) determines disability benefits based on functional impairments. For patients with Tourette Syndrome, who have very severe and physical tics that have impaired their ability to work, communicate, or socialize with other people, they may be eligible to apply for Social Security benefits. The TSA’s position on Social Security is two-fold. First, the TSA recognizes difficulties in even the basic functions for all individuals with TS due to activities derived from tic severity, co-morbid disorders, and effects of the stigma associated with the disorder. Second, to ensure that vulnerable citizens with Tourette Syndrome receive a quick and deliberate process when applying for disability benefits, we suggests that the SSA determine disability based on a case by case basis that would include, but would not be limited to: diagnosis, symptom severity and impairment, as well as quality of life impact. We believe increased knowledge about TS will result in fewer unwarranted denials and appeals to providing critical support for people with TS. Therefore, we would like to encourage our members to work with us on this issue. To that end, we would like to learn about as many compelling stories as possible to reflect the actual experiences of some members of our TS community. We are asking that you and your family and friends think about individuals, who are willing to share their experiences with us. (Click here for our original story; includes TSA contact information). As we prepare for the new 111th Congress and a new presidential administration, we look forward to the opportunity to testify and continue to make our case before the Social Security Administration. |
©2007-2010 Tourette Syndrome Association, Inc. / 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999