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TSA TESTIFIES
AT SOCIAL SECURITY ADMINISTRATION DISABILITY HEARING

On December 5th, 2007, the U.S. Social Security Administration (SSA) held a Compassionate Allowance Outreach Hearing on Rare Diseases in Washington, DC. The hearings took place in the Main Hearing Room, International Trade Commission, 500 E St SW, Washington, DC 20436, from 8:45 a.m. to 5:30 p.m.

SSA's Compassionate Allowance initiative is designed to quickly identify diseases and other medical conditions that invariably qualify under SSA's Disability Listings of Impairments based on minimal objective medical information. The outreach hearing on rare diseases was convened by Michael J. Astrue, Commissioner of Social Security. You can read more about Compassionate Allowances and the outreach hearing in the Federal Register notices of 7/31/07(Advanced Notice of Proposed Rulemaking) and 11/06/07(Hearing Notice) regarding Proposed Rule SSA-2007-0053 or click here to visit ssa.gov website.

The purpose of these hearings is to investigate problems currently being encountered by people with rare diseases who apply for Social Securitiy assistance and to investigate possible ways to reduce unnecessary delays and difficulties.  

TSA provided comments on the Compassionate Allowance Rulemaking in advance of the hearing as well as provided testimony at the hearing by Nancy Thomas Baker, TSA Board Member, to get TS listed on SSA’s list of impairments.

TSA will continue to urge the SSA to include TS on its list of impairments, base eligibility criteria (for SSA disability) on both diagnoses and severity of symptoms, broaden the definition of medical evidentiary requirements, and add observation to the final screening process.

We have an exciting opportunity to influence change and help the most severely affected people with TS! 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. Click here for more information.