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Family Voices Resources
Equity and Diversity
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Transition to Adult Life
How It All Began
National Family Voices (FV) began with a small group of families around a kitchen table. Our roots are with those families who challenged the medical provider who recommended an institution for their son; who insisted on staying with their hospitalized daughter overnight; or who convinced their local school to enroll their child with special health care needs.
FV was started by parents like Julie Beckett. Julie is an Iowa mom, whose advocacy efforts led to the federal law that created the Katie Beckett Program, which has helped tens of thousands of families across the country. This law allows Medicaid to pay for high medical bills for children with the most significant disabilities and medical needs to live at home rather than in hospitals or institutions.
In the early 1990’s, President Clinton’s Health Care Reform Plan began, but families whose children had disabilities or special health care needs weren’t part of the discussion. The initial plan had no provisions for children with special health care needs. It was up to parents, like Family Voices of Wisconsin (FVofWI) Board Member, Dr. Bill Schwab, to advocate that the voices of families be at the table when decisions are being made. FV was founded to be this voice.
“It has been a fun journey to partner with Family Voices to support families of CYSHCN over the years! Thanks for all you do!”
Family Voices of Wisconsin’s Start
In 1995, FVofWI Co-Director, Liz Hecht partnered with other parents, including Linda Rowley, FVofWI Board Member, to be Wisconsin’s representatives to FV. Organizing with other families, FV helped shape our current programs for children with disabilities.
In 2005, Liz brought Barbara Katz onboard. Together they published newsletters, wrote grants, developed trainings and printed our first family-friendly fact sheets.
After the passage of the Family Opportunities Act, FVofWI was awarded federal funding to be Wisconsin’s Family-to-Family Health Information Center (F2F). In 2010, we became an independent, non-profit organization.
“We at DHS appreciate the valuable partnership with Family Voices and the work that Family Voices has done and continues to do for CYSHCN and families!”
Our work would not be possible without strong relationships with the University of Wisconsin, state agencies and advocacy organizations including:
- Alianza Latina Aplicando Soluciones,
- American Family Children’s Hospital—Complex-Care Program,
- Board for People with Developmental Disabilities,
- Children and Youth with Special Health Care Needs (CYSHCN) Network,
- Department of Health Services—Bureau of Children’s Services,
- Department of Public Instruction—Wisconsin Statewide Parent Educator Initiative,
- Family Voices—National,
- Maternal Child and Health Bureau,
- Parent University,
- Survival Coalition,
- Waisman Center,
- WI FACETS,
- Wisconsin Family Ties,
- And many others!
“Thank you for educating me, supporting my family and empowering me to make a difference!”
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