About Us
About Family Voices of Wisconsin
Mission Statement:
Family Voices of Wisconsin promotes a system of comprehensive health and community supports based on fundamental principles that assure the health and well being of children and youth with special health care needs and their families. The role of Family Voices is to advocate for the inclusion of these principles in the design, implementation and delivery of supports and services through out Wisconsin.
Fundamental Principles:
- Children are children first. Supports and services will focus on the child first, and disability second.
- Families have great capacity to care for their children and youth with special health care needs when they have informed real choices, appropriate supports and adequate resources.
- Health and community supports and services both respect and honor the unique culture and beliefs of families.
- Health and community services, including primary and specialty care, must address:
a) Developmental
b) Social
c) Spiritual
d) Emotional and
e) Physical needs of the whole child regardless of age. - Children and youth are best served in partnership with their families and supported within the context of their communities.
- Strong family-professional partnerships improve decision-making, enhance outcomes and assure quality in the delivery of supports and services.
- Families practice cost-effectiveness and expect the same from health and community systems and services.
- Family-to-family support is a unique and essential part of assuring a quality system of services and supports.
- Families and youth with special health care needs will be partners with other families, providers and policy makers in the areas of policy and program development and professional education.
Our Activities:
Family Voices of Wisconsin has a long history of working to improve the system of supports and services for children with disabilities and significant healthcare needs in Wisconsin. We are a group of volunteer parents and advocates of children with disabilities and special health care needs We focus our efforts on working with our partners to support the voice of families to inform and influence public policy on behalf of children and families.
We do this by: providing information to families via the Dis-Update and Family Action Network email lists; convening topical focus groups of family members; surveying families about particular issues and experiences; sharing information with legislators and policy makers; and participating in statewide systems change efforts.
Family Voices currently focuses on the following efforts in Wisconsin:
- Chair the workgroup focused on children and family issues for the Survival Coalition and attend bi-monthly meetings
- Provide leadership in the effort to redesign the system of long term supports for children with disabilities and special health care needs using a new Medicaid home and community based waiver
- Work with Wisconsin Council on Developmental Disabilities and the Waisman Center UCEDD to survey families about their experience with Medicaid Prior Authorization
- Share information from surveys in public testimony to the Wisconsin legislative audit committee as part of a larger effort to improve access to Medicaid services.
- Collected hundreds of stories from families regarding the Wisconsin Family Support program in an effort to increase program funding
- Coordinate the development of issues papers, web site information, and budget papers for the DAWN
- Co-sponsor The Circles of Life Annual Conference for families and A Gathering of Youth, a conference for young people with disabilities
- Long-term care reform
- Preserving Medicaid funding for children with autism
Family Voices of Wisconsin Co-Directors:
Barbara Katz (l) and Liz Hecht
Family Voices of Wisconsin is part of the national Family Voices network, which acts as a clearinghouse for information and education concerning the health care of children with special health needs. We track public and private sector health care changes that affect our children and families through the collective efforts of our families: a volunteer Coordinator in every state; 10 Regional Coordinators; and a small staff working in several locations around the country. Together, we share the expertise and experiences of families from around the country with state and national policymakers, the media, health professionals, and other families. We work in public and private hospitals, public health programs, in state capitals, in Washington, DC, serving on boards and task forces, working in partnership with health professionals and policymakers, bringing the family perspective to policy discussions and decisions. There are almost 40,000 Family Voices members - families of children with special health needs and friends and professionals who know and love our children.
We are always interested in hearing about the challenges families experience in navigating the health and community-based systems of support for families and in the solutions families have to improve the systems that serve us. For more information on Family Voices go to our website at http://www.wfv.org/fv/ Or you can call Liz Hecht at 608-239-1364, e-mail: Liz@FVofWI.org