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HAVE YOUR VOICE HEARD!
TELL US YOUR STORIES

We have an exciting opportunity to influence change and help the most severely affected people with TS!

On December 5th, 2007 TSA Board Member, First Vice Chair, Nancy Thomas Baker testified at the U.S. Social Security Administration (SSA) Compassionate Allowance Outreach Hearing on Rare Diseases on behalf of the TSA.  The purpose of these hearings is to investigate problems currently being encountered by people with rare diseases who apply for Social Security assistance and to investigate possible ways to reduce unnecessary delays and difficulties.

In response to our testimony, TSA was asked to provide the SSA with two things:

• findings about those who were approved or not approved, in regards to the length of time it took and of course the process itself, and
• specific guidelines the SSA should be using to judge eligibility of  TS applicants, with descriptions of symptoms and their severity and the nature of impairment.

WHAT WE NEED
We are looking for YOUR stories!  Please write to us if you have experienced difficulty getting Social Security Administration benefits, such as Social Security payments and Medicaid/Medicare health insurance coverage.

We need to know:

• First & last name (For TSA purposes only; names will NOT be disclosed in our findings.)
• City, State
• How long the application process took from start to finish
• Were you denied coverage after the first application
• Was the denied claim appealed
• Whether or not benefits were ever received, and if so, after how many approaches to the SSA
• Any additional anecdotal experiences and  information

YOUR RESPONSE IS CRITICAL!
By sharing your stories, it is our hope that increased SSA understanding about Tourette Syndrome, with inclusion of accurate medical information, will result in fewer unwarranted denials and appeals. This improved knowledge will provide critical support for people with TS.

Please send your stories to:
John Yi
E-mail tsdc@tsa-usa.org / Fax 202-408-3260

THANK YOU!

Click here to read more about TSA's 12/05/07 testimony on Compassionate Allowances; click here to visit ssa.gov website.