A Lifetime of Support
PWSA | USA’s Family Support team members are your partners in hope. They provide guidance and support to individuals diagnosed with Prader-Willi syndrome, their families, and care providers. The team provides education and training to medical providers, educators, and professional care givers about the syndrome, and advocates for the comprehensive needs of the entire PWS community.
Families count on PWSA | USA’s Family Support team for accurate information and comprehensive support at the time of their loved one’s diagnosis. Later, the Parent Mentoring Program helps connect families with “veteran” parents, mentors who have shared similar experiences. Parent Mentors are carefully chosen with each family’s specific needs in mind and are committed to ensuring newly diagnosed families have access to the most up-to-date research material, educational literature, and nutrition and therapy best practices.
Effective weight management is a crucial part of the care of a person with Prader-Willi syndrome. The Family Support team assists families with appropriate meal planning and environmental supports. They also provide nutritional information and information about weight management to dieticians, school staff, and a wide variety of other caregivers and providers not familiar with the syndrome.
The Family Support team assists with the development of positive behavior intervention plans, review of plans and training implementation of best practices. They provide behavior management support to agencies looking to support individual within the community, such as case managers, job coaches, and sheltered work sites.
Consultation and training are available to residential providers, school personnel, and other support staff who need guidance or increased knowledge to support their client. Consultations may be provided in person, via telephone or teleconference. The Family and Medical Support team works with agencies that express an interest in serving individuals with PWS and have inquired about training and program development. In addition, they facilitate consultations between PWSA | USA’s volunteer medical consultants and an individual’s medical team, emergency room physicians, or specialty .
The Family Support team can assist with appealing denials for Medicaid, insurance coverage (for example, growth hormone), and Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). They write appeal letters, provide supporting documentation, and help families and guardians through the application process for Medicaid and SSI.
PWSA | USA Support Groups
PWSA | USA Facebook Support Groups are safe, secure spaces for connecting with other families to share personal experiences and to learn from one another; all of the groups are “private” meaning only members can see who's in the group and what they post. All of the support groups are moderated by PWSA | USA staff, however, the information provided in these groups is intended for your general knowledge only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Contact us today to be added to one of our Facebook Support Groups.
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.