Thank you for your interest in taking action to advocate in support of the Tourette Syndrome and Tic Disorder community. Take action with direct access to Capitol Hill through this online legislative service site that is designed to help you with self-advocacy. Please contact publicpolicy@tourette.org with any questions.
2026 Tourette National Advocacy Day registration is open! Learn more.
IDEA and Section 504
The US Department of Education proposed moving key offices, including the Office of Special Education and Rehabilitative Services (OSERS) and the Office of Civil Rights (OCR), to other federal agencies in the Administration’s ongoing efforts to close the Department of Education. In addition to these proposals, major staffing reductions have made it difficult for these offices to fulfill their missions to serve students with disabilities, including for those living with Tourette Syndrome or a Persistent Tic Disorder.
While it is not clear the effect these changes could have on special education programs long-term, it DOES NOT end federally protected rights, policy, or funding under the Individuals with Disabilities Education Act (IDEA). However, this action does violate federal law as Congress must approve these plans. Now is the time for you to contact your congressional delegation to voice your concerns. This year marks the 50th anniversary of IDEA, and your support is needed more than ever!
Safe Step Act
Step therapy is a tool used by health plans to control spending on patient’s medications. While step therapy can be an important tool to contain the costs of prescription drugs, in some circumstances, it has negative impacts on patients, including delayed access to the most effective treatment, severe side effects, and irreversible disease progression.
Currently, when a physician prescribes a particular drug treatment for a patient, the patient’s insurance company may require them to try different medications and treatments before they can access the drug originally prescribed by their physician. This protocol is known as “step therapy” or “fail first.” Step therapy protocols may ignore a patient’s unique circumstances and medical history. That means patients may have to use medications that previously failed to address their medical issue, or – due to their unique medical conditions – could have dangerous side effects.
To improve step therapy protocols and ensure patients can safely and efficiently access the best treatment for them, Congress reintroduced the Safe Step Act of 2025 (H.R. 5509). The Safe Step Act protects the ability of individuals with disabilities and disorders, like Tourette Syndrome, to access the specific drug prescribed by their physician by placing reasonable limits on step therapy or “fail-first” requirements. Specifically, this legislation amends the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan to establish an exception process to the following:
- Patient already tried and failed on the required drug.
- Delayed treatment will cause irreversible consequences.
- Required drug will cause harm to the patient.
- Required drug will prevent a patient from working or fulfilling daily activities.
- Patient is stable on their current medication.
The legislation would require that requests be granted in a timely manner — within three days after receipt of the request or 24 hours when the protocol jeopardizes the life or health of the individual. The bill’s sponsors include Representatives Rick Allen (R-GA), Raul Ruiz (D-CA), Mariannette Miller-Meeks (R-IA), Lucy McBath (D-GA), Bob Onder (R-MO), and Senators Lisa Murkowski (R-AK), Maggie Hassan (D-NH). The Tourette Association of America applauds the bipartisan leadership from the Safe Step Act’s sponsors. Now, we need your help to get this bill passed!
Please use the form below to write your congressional delegation and ask them to cosponsor and support passage of the bill.
