Ally Tumblin, a fourth grader in Colorado, was born without a right ear and ear canal, a condition known as Microtia Atresia. The only way she can hear is a with a specialized bone-anchored hearing device that costs between $5,000-30,000… and none of it is covered by insurance.
Ally, motivated to change the law and the lives of thousands of other kids and adults with Microtia Atresia, wrote to Representative Joe Neguse (D-CO). Moved by Ally’s plea, Rep. Neguse introduced H.R. 5485, a federal bill named after Ally. “It essentially says that private insurance companies will ensure that this device is covered from here on out.”
Much like Microtia Atresia, individuals diagnosed with Prader-Willi syndrome require lifelong supports and services. That is why Prader-Willi Syndrome Association | USA demonstrated our solidarity with Ear Community and our support for the passage of Ally’s Act (H.R. 5485) to ensure that private insurance companies provide coverage for osseointegrated hearing devices.
While the PWS community might not have the resources of groups with greater numbers, we know change is still possible. “It’s so meaningful to have the Prader-Willi Syndrome Association | USA join in the efforts for this legislation,” said Katie Wallace, Legislative Assistant for Congressman Joe Neguse (CO-02).
“Your endorsement shows a genuine passion for not only wanting to help children and adults in varying communities no matter what their challenges are, but for also wanting to be supportive of other organizations in their advocacy efforts,” said Melissa Tumblin, Ally’s mom and Founder / Executive Director of Ear Community.
People in Congress make better and more comprehensive decisions when a diversity of voices is included. To learn more about our public policy efforts or voice your support, visit: https://p2a.co/KglyyNs
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.