The Better Care Better Jobs Act, HR 4131, just obtained more bipartisan support in the US House of Representatives! We first alerted our community to show their support for this piece of legislation less than a week ago. Since then, Representative Hakeem S. Jeffries, [D-NY-8], Representative Veronica Escobar, [D-TX-16], Representative Cori Bush, [D-MO-1] and Representative Ed Perlmutter, [D-CO-7] have joined forces with 132 other US representatives to show their continued support for the rare disease community. The Better Care Better Jobs Act presents an historic opportunity to significantly improve the lives of our families and all Americans with complex medical needs and disabilities. By recognizing that caregiving IS infrastructure, investing in home- and community-based services (HCBS), getting eligible people off of Medicaid waiting lists, providing better support for family caregivers and better pay for home health workers, a brighter future is within our reach.
Help encourage your elected officials to support the rare disease community by sending a letter of support: Support the Better Care Better Jobs Act (p2a.co)
To read more about The Better Care Better Jobs Act, visit: Text - H.R.4131 - 117th Congress (2021-2022): Better Care Better Jobs Act | Congress.gov | Library of Congress
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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.