|Tic With It|
Tourette Syndrome Association, Inc.
On Wednesday, May 31, 2006 TSA will be holding its fourth annual national “Government Relations Awareness Day.” As you will notice, this day will coincide with TSA Awareness Month.
The “Government Relations Awareness Day” will help your chapter continue our local government relations campaign–with local, state, and federal elected officials–by meeting with them in their local offices. This is a chance for you to meet with them without having to travel to Washington, D.C.
The date was chosen because the U.S. Congress will be recessed for the Memorial Day holiday, and your Representatives and Senators should be in their home states and districts.
I urge you to join us in this campaign to meet with your State Senators and State Representative. We hope to have as many meetings a possible on this date. Although the information that I will provide to you is geared towards your meetings you will have with your federal officials–the messages can also be used in meeting with your state and local officials. It is very important that we educate all elected officials about Tourette Syndrome and the affect it has on individuals and families.
Your meetings should occur throughout the day on May 31, 2006.
What will be expected of you?
You will need to identify your Senators and Representative. To do so, contact the Capitol switchboard at (202) 224-3121. Be prepared to provide your zip code, full name and the city and state where you are registered to vote. If you have access to the Internet, the following resources will provide you with information about your legislator:
You will then need to call and set up appointments with your Senators and Representative in your district. Be persistent!! When you call ask for the appointment secretary or the scheduler and tell him/her that you want to meet with your Representative or Senator back in the state–NOT IN WASHINGTON, DC. You may have to call several times. You may also be asked by the congressional offices to send a request in writing for the meeting. A request form letter and sample letter are included with this packet and may be used. You will be asked to fax your requests. If the Member is not available, please ask to meet with a staffer.
After you have secured an appointment, you will need to send a letter reconfirming your appointment. A confirmation form letter and sample letter are included within the packet I will e-mail or mail to you.
Set up your meetings anytime during the day of May 31st. A meeting will last approximately 30 minutes. Depending on where you live in your state, you may only be able to schedule one meeting for the day (your Representative and Senators district offices may not be close to each other). However, you will notice that most Senators have a couple different district offices throughout the state.
The purpose of these meetings are three fold: (1) for you to educate your federal, state, and local elected officials about TS and its associated disorders, (2) to advocate for specific federal legislation affecting the TS population, and (3) to help and encourage each chapter to start its own local government relations campaign. Information about how to conduct the meeting itself and what to discuss is included in other enclosures within the packet
You will need to send a thank you letter after the meeting. A thank you form letter and sample letter are included within your packet.
How will TSA assist members for the Government Relations Awareness Day?
TSA will provide information on How to Advocate Like a Pro.
TSA will provide detailed information on specific issues and bills which affect individuals with TS and associated disorders.
TSA will provide sample letters.
TSA will provide handouts for you to leave at the end of your visit.
TSA will provide a Michigan TSA t-shirt to each person who participates in this event.
ISSUES YOU NEED TO BE AWARE OF:
Mental Health Parity
Parity, the term used for equal treatment of mental disorders and physical ailments in health care and insurance coverage, is a prime legislative objective for the TSA. For historical reasons, TS has been classified as a mental disorder in the reference lists used by health maintenance organizations and health insurers. This is so despite the fact that TS is an inherited, neurobiological disorder characterized by involuntary movements and sounds. Both neurologists and psychiatrists treat the disorder, using the same medications. As a result of the arbitrary classification of TS in the mental health category, many people with severe TS have been denied or greatly limited in receiving treatment or reimbursement for expenses of treatment relating to hospital stays, office visits, and medications.
Congress took a limited step toward parity in 1996 by passing a law that prohibits annual and lifetime dollar limits on a person’s mental health care that are lower than the limits for general medical and surgical services.
On March 17, 2005, Representatives Patrick Kennedy (D-RI) and Jim Ramstad (R-MN) introduced H.R. 1402, the “Senator Paul Wellstone Mental Health Equitable Treatment Act.” H.R. 1402 would modify the1996 parity law by eliminating financial disparities (co-payments, deductibles and other out-of-pocket costs) and restrictions on the frequency of treatments (day and visits limits). The bill simply calls for the same level of coverage for mental health care as is provided for medical and surgical care.
The primary argument given against parity is increased health care cost. However, a 1998 report to Congress from the NIMH found health costs increased one percent or less for businesses and states that adopted parity. Also, a Congressional Budget Office analysis of the bills from the 107th Congress, S.543 and H.R. 4066 (Mental Health Equitable Treatment Act), predicted only a 1% increase in health insurance premiums would result from its implementation. The health plan premium increase appears small in comparison to the costs to the United States from currently untreated mental health.
Please urge you Senators and Representative to pass mental health parity legislation this year.
Reauthorization of the Individuals with Disabilities Education Act
The national Tourette Syndrome Association (TSA) has long lobbied to have Tourette Syndrome listed as a disability under the category of Other Health Impaired (OHI) within IDEA. We have been successful in several states which have resulted in turning around the lives of thousands of children with TS and have allowed them to become academically successful and to reach their full potential.
The classification category frequently dictates the placement, services provided and behavioral intervention plan. TS is a medical condition caused by a chemical imbalance in the brain. Many educators, however, continue to erroneously see TS as a behavioral or conduct disorder because of the bizarre nature of its symptoms and therefore classify these children under the Emotionally Impaired (EI) category. This incorrect classification frequently results in students being placed in programs that are designed for students with emotional disorders where bullying and teasing generally increase as does the punishment for their symptoms. The outcome is devastating and often results in a student dropping out of school. It is our strong belief that if TS were appropriately listed under the category of OHI, the numbers of classified students would not increase, but rather the numbers of drop outs would decrease.
Reward and consequence based interventions are used in EI behavior plans as motivation to change inappropriate behaviors and to encourage more socially appropriate behaviors. Because students with TS do not have control over their symptoms, a program that is based on punishment and reward is inappropriate and ineffective just as it would be for students with seizure disorders. For many students, even those with significant symptoms, the appropriate classification of OHI results in appropriate services that make it possible for them to remain in a general education setting. For some students with significant symptoms, classification of OHI may eliminate the necessity for costly residential placements.
Given the proper classification of OHI for a student with TS, emphasis will be placed on effective teaching strategies and techniques and environmental modifications that do not involve punishment rather than behavioral modifications for uncontrollable symptoms. This will help the child to develop life long coping and management skills, all of which will lead to effectively improving the functioning of the child as a student and as an adult.
Recommendation: To ensure that students with Tourette Syndrome receive appropriate special education services and that they are not misclassified under Emotionally Impaired, we strongly recommend that Tourette Syndrome be included in the regulatory listing under Other Health Impaired.
Please urge your Senators and Representative to support the above recommendations for TS students. Provide personal stories about what is or is not working in your child’s school.
Protections Against Genetic Discrimination
TS is a genetically based disorder. Our members are concerned about being denied insurance or employment, without any reference to their actual condition, their ability to perform in a job, or the cost of their medical care, simply because there may be a history of TS in their family. Without protections on the disclosure and use of genetic information people will be reluctant to participate in critical research, undertake certain types of therapies, or give a full family medical history to treating physicians.
The bipartisan Genetic Information Nondiscrimination Act (S. 306 and H.R. 1227) will establish strong protections against discrimination based on genetic information both in health insurance and employment. Support for the bill has come from a wide range of organizations representing patients, medical professionals, families and employers. All Americans should be given the comprehensive protections against genetic discrimination in health insurance and employment.
With regard to health insurance discrimination, the bill will:
Prohibit enrollment restriction and premium adjustment on the basis of genetic information or genetic services;
Prevent health plans and insurers from requesting or requiring that an individual take a genetic test;
Prevent health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment–the time when this information is most likely to be used in making enrollment decisions; and Cover all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.
With regard to employment discrimination, the bill will:
Prohibit discrimination in hiring, compensation, and other personnel processes;
Prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
Require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances; and Cover employers, employment agencies, labor organizations, and training programs.
Please urge your Representative to vote for strong genetic nondiscrimination legislation. If your Representative or Senators are cosponsors of either S. 306 or H.R. 1227, please thank him or her.
On December 21, 2005 Congress passed the Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act of 2006, which included $1.8 million to continue to fund the Tourette Syndrome Public Health Education and Research Program at the Centers for Disease Control and Prevention (CDC).
As you know, this program was authorized in 2000 with the passage of the Children’s Health Act. For the last three years, TSA has been advocating Congress to receive funding for this program. In 2001, TSA was able to get report language in the Senate Labor, Health and Human Services, Education and Related Agencies Appropriation bill (S. Rept. 107-84) urging the National Institutes of Mental Health to develop a public education program that would reach parents, educators, pediatricians, family physicians, and other health care professionals. Unfortunately TS was not included in the final conference report that year. In 2002, TSA was unsuccessful at receiving language or funding. In January 2004, Congress passed the Consolidated Appropriations Act of 2004, which included $1.5 million for the creation of a Tourette Syndrome Public Health Education and Research Program. Also, in 2004, Congress passed another Consolidated Appropriations Act of 2005, which included $1.8 million to continue to fund the Tourette Syndrome Program at the CDC.This year TSA is going back to Congress to ask for continued funding of the Tourette Syndrome Program at the CDC. Our appropriations request is for $1.8 million (flat-funding) for the CDC to continue to educate parents, physicians, educators and other health care workers about the disorder and to expand on the scientific knowledge base on prevalence, risk factors and co-morbidities of TS.
The education program will provide education and intensive training for the public, physicians, allied health care workers, and teachers about TS. The objectives are to increase recognition and diagnosis of the disorder, decrease the stigma attached to the disorder, increase the provision of and improve the nature of treatments for those with the disorder, decrease negative impacts on families dealing with the disorder, and improve academic outcomes for children with TS. The program will use many vehicles to achieve the above, including, (1) multi-track conferences where experts in the field will give lectures and workshops; (2) grand rounds in teaching hospitals; (3) development of new materials containing the most current information on TS; and (4) distribution of new and existing materials in written, video, and CD-ROM formats. The program will particularly focus on reaching the target audiences in traditionally under-served communities.
To address important gaps in scientific knowledge regarding TS, the research component of the program will seek to determine the prevalence of the disorder in the general population, any variations in prevalence among different subgroups, such as male and female, and the frequency of co-occurring disorders such as Attention Deficit Hyperactivity Disorder and Obsessive-Compulsive Disorder. The research will improve upon pervious more limited and isolated investigations of this issue by examining a large and varied population, using uniform criteria reflecting the most current knowledge in the field, and employing proven epidemiological methods.
Please urge your Senators and Representative to support continued funding for the Tourette Syndrome Public Health Education and Research Program.