- (1) Pending regulations for the Mental Health Parity Act
(2) Application process for Social Security disability benefits
(3) Genetic Information Nondiscrimination Act
Additional information is offered below the fold.
If you or someone you know wants to offer input on one or more of these topics, please send correspondence to Elridge Proctor at both her email address (firstname.lastname@example.org) and primary fax number (202-408-3260).
SOCIAL SECURITY DISABILITY BENEFITS: The National TSA continues to lobby the Social Security Administration to add TS to its list of “compassionate allowance” conditions. That action would likely improve the prospects of individuals who apply for Social Security disability benefits because their symptoms are so severe they cannot work or hold a job. Various TS families and individuals have reported considerable frustration when they have applied for such benefits, including situations where they have been denied benefits even after they have provided “substantial documentation of diagnosis and detailed medical history.” If you or someone you know has attempted to apply for such benefits, but has been denied or encountered major obstacles during the application process, please share those experiences in writing with the National TSA.
GENETIC INFORMATION NONDISCRIMINATION ACT (GINA): Like Mental Health Parity (noted above), GINA was signed into law last year. The National TSA expects there will soon be a public call for comments on how to best implement GINA, which prohibits health insurers and employers from discriminating against individuals — i.e., denying coverage or charging higher premiums — on the basis of genetic information gathered during clinical trials or through other methods. If you or your family have encountered any such discrimination (related to TS), by an employer or insurer — or if you have general thoughts about what protections you expect GINA to provide — please share those thoughts in writing with the National TSA.