West Virginia State Senator Patricia Rucker has agreed to sponsor efforts on adding Prader-Willi syndrome as an approved diagnosis for IDDW (Intellectual Developmental Delay Waiver)!
Every state has diagnoses listed in different ways, and each state has a different approach to how they will recognize rare diseases. Most states have it written into a certain bill, but it does not appear to be that way in West Virginia. Sen. Rucker has agreed to find out how and where this can be accomplished in her state so we can push our agenda into open session, which runs the month of February.
Sheri Mills, a resident of West Virginia and mom of five-year-old Lyra with PWS, met with Sen. Rucker to discuss the initial steps ahead of open session in February. This will be a lot of preparation in a short amount of time, but both Sheri and Patricia are ready for this challenge. Sheri recommends meeting in-person with your elected officials to discuss the issues you are having in your state, and discuss how they can help, should you also want to have your state recognize PWS.
If you’re interested in starting the process of having PWS added to your state’s list of developmental disabilities, contact us at advocacy@pwsausa.org to get started.
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.