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. Theย Better Care Better Jobs Actย presents an historic opportunity to significantly improve the lives of our families and all Americans with complex medical needs and disabilities.ย 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: ย Text - H.R.4131 - 117th Congress (2021-2022): Better Care Better Jobs Act | Congress.gov | Library of Congress
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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
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.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
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.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.