Families across the country and around the world turn to PWSA (USA)’s Family Support team for accurate information and comprehensive support at time of their loved one’s diagnosis. Later, the Parent Mentoring Program helps connect families with “veteran” parents, mentors who have shared similar experiences.
The Family Support Team assists with the development of positive behavior intervention plans, review of plans and training implementation of best practices. They also 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. The Family 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 will write appeal letters, provide supporting documentation, and help families and guardians through the application process for Medicaid and SSI.
PWSA (USA) has created a Residential Care Database of agencies providing residential services to people diagnosed with PWS. The Family Support team assists families with their search for the most appropriate provider for their loved one. They also assist with communication and conflict resolution between families and providers, and help families advocate for their loved one with PWS.
Individuals who have been diagnosed with PWS can count on the Family Support team for counseling and support with concerns for their own health. Caregivers and family members too can find emotional support and counseling anytime they are struggling with supporting someone diagnosed with PWS.
PWSA (USA) Family Support team provide guidance and information for the future planning of individuals with PWS to help ensure the best quality of life. Families can find information about guardianship and support through the process of determining if obtaining guardianship is appropriate for their loved one.
PWSA (USA) Family Support team provide guidance and information for the future planning of individuals with PWS to help ensure the best quality of life.
The Family Support team does not give medical advice but can help caregivers navigate their healthcare needs and access appropriate medical specialty care. Evidence-based care is discussed and support documentation may be provided for families. When families are in crisis or individuals are ill, the team helps find urgently needed care to maintain safety and prevent escalations or worsening of the condition.
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.