Family Support Program

A History of Family Support in Wisconsin

In 1987 the Wisconsin legislature and governor agreed that families raising a child with disabilities deserve assistance. The Family Support Program provides flexible, gap filling funds to families to support their child at home. We have a long waiting list for this program. We believe that it harms families and it puts children with disabilities at risk. The goals of supporting families is to prevent very costly out of home placement, to support a child’s development, develop a sense of belonging that focuses on a child’s lifelong connection to family and community. The Family Support Program provides a small amount of money that families can use to help them meet the needs of their child with severe disabilities. An equitable statewide system of family support has not yet been realized. Our system of family support cannot be truly comprehensive as long as it is limited to a small number of families, or is administered very differently from one county to another.

• In 2001,Governor McCallum approved a $1 million increase in funding over the next two
  years, the first increase in funding for the Family Support Program (FSP) since 1994.
• There are now approximately 3500 families waiting. The program serves approximately
  2400
• In 2003, there were 38,809 people with developmental disabilities served by counties,
  52% (20,107) of whom were children ages 0-21
• In 2003, 1.3% ($5.9 million) of the total state/county budget allocation for developmental
  disabilities went to support families caring for children with disabilities.
• Each funding increase for FSP has been associated with a reduction in out-of-homeplacement.
• Out-of-home placement costs in 2003 were about $51,081 per child for foster care and
  $99,600 per child for a Child Caring Institution.

Why Support Families Raising Children with Disabilities?

The challenges faced by children with disabilities often require extraordina ry effort by other family members. Such effort subtracts from the family’s capacity to meet other life demands. Families who provide care at home to children with disabilities often face unique challenges that can undermine the family’s capacity to function effectively. Aside from meeting the daily demands of care giving, families may also be confronted with:

• Persistent financial costs related to the specialized care of their child with disabilities
• Unemployment or missed vocational opportunity resulting in lost income
• Difficulty completing normal household routines
• Added responsibility negotiating multiple service systems

The Wisconsin Trend

“While much has changed within the developmental disabilities system, for families there has been little or no change. Millions of dollars are spent on out-of-home services with relatively little invested in families.While most people with developmental disabilities live at home with their families, the nation’s investment in family support pales in light of what is spent on a community service industry that focuses on out-of-home services.”

• WI fiscal effort for congregate care spending was 64% above the national average in 2002
• WI per capita spending on family support was 27% below the national average in 2002
• WI fiscal effort for community spending 11% above the national average in 1996
• Adjusted for inflation, community services spending increased 26% above the national average from 1992-2002

What Is The Impact of Our Current Funding Trend On Wisconsin Families Who Have Children With Disabilities?

We know that the waiting lists for the Family Support Program and Medicaid waivers have grown over time. We have heard testimony from families at many public hearings that attest to their challenges navigating our current system, the extraordinary time demands, chronic stress and impact on family dynamics and routines that having a child with disabilities creates. It is easy to understand why families might need assistance, but quantifying the actua l public costs of not supporting families is challenging. How do we justify spending public dollars for support to this group of families? What do we know?

Family Support coordinators report families in Wisconsin today are experiencing greater stress in managing the multiple funding and support systems for their child with severe disabilities, an increase in the number of families considering or placing their child out of home, and an increase in the number of requests for out-of-home placements for children ages 3-5.

This information raises concerns that we are compromising our history as a state that effectively supports children with disabilities and their families and are moving toward a crisis in the partnership that enables families to love, nurture and support their children with disabilities at home.

Next Steps For The Future

• $ 5.2 million is needed to end the current waiting list for Family Support approximately
  3500 families.
• Increase the $3000/year maximum, which has remained unchanged since 1987

Educate policy-makers about the importance of a system of supports and services that is familydirected. Share family stories that illustrate how families can use resources wisely when given the opportunity to make decisions. Explain what it means for a child and family who are on a waiting list. Become familiar with A Guiding Philosophy for Systems, Programs, and Providers That Serve Children and Families and imbed these ideas into the programs that serve children and families. Join efforts to improve the outcomes for people with disabilities by joining the DAWN and the People Can’t Wait initiative and join the Family Action Network by sending your e-mail address to hecht@waisman.wisc.edu.

Prepared by: Liz Hecht, Family Support Project Coordinator, Waisman Center, Center for Excellence in Developmental Disabilities, University of Wisconsin - Madison. Rev 11/04