Greater Missouri TSA » Tourette Syndrome and Public Policy

Call to Action

Pete Abel — Wed, 30 Mar 2011 19:18:29 +0000

Please consider contacting your Members of Congress this week, asking them to add their signatures to a “Dear Colleague Letter” in support of 2012 funding for Tourette Syndrome research and education.

The Children’s Health Act of 2000 was the first time Tourette Syndrome (TS) was mentioned by name in federal legislation. That legislation authorized a Public Health, Education and Research Program on TS at the U.S. Centers for Disease Control and Prevention (CDC).

Each year, the Tourette Syndrome Association must request an appropriation from Congress to continue this CDC program. The money goes toward raising public awareness about TS and training doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. (Note: The funds for this program are an appropriation, NOT an earmark.)

It has taken decades of hard work to get to where we are now with awareness of TS. We cannot afford to lose momentum.

To take action, please consider the following options:

Option #1:

House

Senate

Option #2: Write to your Members of Congress through the tools provided in the TSA Legislative Action Center.

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SAMPLE MESSAGE TO CONGRESS

After being transferred to the office of the relevant Member of Congress …

and

After being connected with the appropriate Legislative Assistant, either live or by voice mail …

Tourette Syndrome or TS is a complex, genetic, neurological disorder that is greatly misunderstood by the public and frequently mis-diagnosed by doctors because it is often accompanied by other disorders. I am very concerned about proposed cuts to U.S. health programs, in particular, the Tourette Syndrome Public Health, Education and Research Program at the CDC.

The support of Congress in funding this program for the past seven years has provided urgently needed training for doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. Unfortunately, with no known cure, the challenges of living with TS are often so great that a long-term investment is needed in improving the lives of individuals who have TS.

As Congress moves forward with the budget for the federal government’s 2012 fiscal year, please keep my family and all individuals living with TS in mind.

Specifically, I hope your office will sign on to the “Dear Colleague Letter” that is circulating in support of the Tourette Syndrome program. For more information about that letter, you can contact …

In the House: Michael Grogan in Congresswoman Carolyn McCarthy’s office OR Jeffrey Last in Congressman Leonard Lance’s office

In the Senate: Ariel Simon in Senator Charles Schumer’s office.

Also, Elridge Proctor at the Tourette Syndrome Association can help answer any questions you might have. She can be reached at 202-408-7009.

Thank you for your consideration.

Protecting Special-Needs Students

Pete Abel — Sat, 12 Dec 2009 16:56:33 +0000

The Greater Missouri TSA is joining with other organizations to advocate for a change in state law that would prohibit the use of corporal punishment (spanking) on special needs students, including TS students.

This issue was brought to our attention by a Poplar Bluff family whose TS child was threatened with spanking in the sixth grade.

Missouri is one of the few remaining states that does not prohibit corporal punishment in its public schools. Instead, the state leaves the use of corporal punishment to the discretion of local school districts. However, the use of corporal punishment on special-needs students could have particularly damaging psychological effects and severely undermine educational progress for these students.

In addition to our organization, the Joshua Center for Neurological Disorders, Missouri NEA, Belle Center, and St. Louis Arc support this change in state law — and we are currently reaching out to other, similar organizations to ask for their support.

If you are affiliated with a special-needs advocacy organization, please ask them to join us in this effort. For more information, contact Missouri TSA Government Liaison Pete Abel.

Action Alert: Share Your Input

Pete Abel — Wed, 17 Jun 2009 21:03:19 +0000

The National Tourette Syndrome Association (TSA) is looking for input on three topics:

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 (elridge.proctor@tsa-usa.org) and primary fax number (202-408-3260).

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MENTAL HEALTH PARITY: Congress passed a law last year requiring insurance providers – namely, those that offer both physical and mental health benefits – to make these benefits equal (i.e., the new law prohibits lesser benefits for mental health than for physical health issues). Although TS is an inherited, neurobehavioral disorder, it has historically been classified as a mental health disorder in the reference lists used by health maintenance organizations and insurers. Currently, agencies within the U.S. Departments of Treasury, Labor, and Health & Human Services are seeking public comment to instruct them, as they author the regulations that will guide the implementation of this new “mental health parity” law. The National Tourette Syndrome Association has already provided comments to the relevant agencies, asking (among other things) that their final regulations (a) provide clarity to the states on situations where state laws are stronger (require more) than the new federal law, and (b) require insurance providers to offer clear, written explanations when a mental health service is denied coverage. If you or your family has experienced one or more situations where TS treatments have been denied insurance coverage — or situations where you were provided a lesser benefit than for a physical health issue — please share those experiences in writing with the National TSA.

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.

Action Alert: Education Program Funding

Pete Abel — Tue, 10 Mar 2009 22:07:53 +0000

For five years now, Congress has allocated approximately $2 million in annual funding for the Tourette Syndrome Public Health, Education and Research Program at the Centers for Disease Control and Prevention (CDC). Among other vital functions, this program enhances knowledge and understanding of Tourette Syndrome among educators, medical and allied professionals throughout the country.

With budget pressures mounting in Washington, we need your help to maintain funding for this program. Will you take 10 minutes or so out of your busy schedule today to make your voice heard? Visit this page to learn how.

Meeting with Elected Officials

Pete Abel — Thu, 12 Feb 2009 09:30:07 +0000

Despite much progress in the last 20 to 30 years, there remains a substantial lack of awareness and understanding of Tourette Syndrome (TS).

The national Tourette Syndrome Association (TSA) and its Greater Missouri Chapter are working diligently to help close this knowledge gap. One such effort involves annual visits with members of Congress. During these visits, individuals with TS and their families can share their stories with the men and women who write our nation’s laws and establish funding for initiatives like the Tourette Syndrome Public Health, Education, and Research Program.

Last summer, five TS families, including three young men with TS, visited with Congressman Todd Akin at his District office in Ballwin, Mo. This spring, the Greater Missouri TSA is actively working to schedule local visits with Sens. Claire McCaskill and Kit Bond, as well as Reps. William Lacy Clay, Russ Carnahan, and their counterparts in the St. Louis Metro East area, Reps. Jerry Costello and John Shimkus.

If you are a constituent of any of these members of Congress, have a TS story to share, and would like to participate in the visits we are attempting to schedule, please contact Pete Abel — the government relations liaison for the TSA’s Greater Missouri Chapter — at 314-315-9346 or abel.reply@gmail.com.