Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64).
When asked about the bill and what inspired her to undertake this challenge, Erin said “Before I had Victoria, I assumed, like many people do, that disabled children are guaranteed the services they need to live full lives. I assumed the financial burden was not placed at the family’s feet – because that’s what I think a civilized society should do. At the bare minimum, we should take care of our most vulnerable children. Unfortunately, that is not the case for far too many families, in far too many states, including Ohio. I’ve always loved a good challenge, and this is one that needs to be addressed. We MUST continue to move the needle for families of children living with PWS. If our community doesn’t do it, who will? I’m honored to leverage my skillset to help not just my family, but hundreds of other families in Ohio like mine. And I’m incredibly thankful for Representative Sweeney’s unwavering support. Let’s do this!”
If you or someone you know is interested in leading the charge in your state, please email PWSA | USA at Advocacy@pwsausa.org.
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PWS State Qualifier Map
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.