A recommendation, by Wingspread participants is to use the phrase “supporting families” because the phrase “family support” is recognized by many as a specific service or program rather than an approach.
In March of 2011, The Johnson Foundation’s Wingspread Family Support Summit brought together 30 national and state disability leaders to develop recommendations for policy reform to ensure families of people with I/DD receive the recognition and supports they need. Much of the work of supporting families since the Wingspread Family Support Summit has been driven by the key priorities established in the 2011 National Agenda for Supporting Families, elements of which have been adopted into state and national policy, funding, and practices.
Executive Summary
Families are the core unit in our society, serving as a source of support for all of its members. For individuals with intellectual and developmental disabilities (I/DD), the role of family is unique and often central in the support and care provided across the lifespan. Family members play key roles in identifying and securing opportunities for their family members to participate in meaningful ways within their community and ensuring access to self-determined lives. Parents and other family members of individuals with I/DD often provide medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, the vital role of families is not fully recognized and supported in disability policy and practices.
Supporting individuals with intellectual and developmental disabilities to live and fully participate in their communities throughout their lives has emerged as a fundamental right and consideration in disability policy and practices. Because of the role that families continue to play in the lives of their family members with intellectual and developmental disabilities, future policies and practices must reflect the family as part of the system of support. This is especially important as the demands for services that support individuals with I/DD are increasing, while at the same time both state and federal funds are diminishing. This situation makes it critical for disability policies to acknowledge the family as a vital partner in supporting the individual to live in the community and to pursue independence, integration and full participation, and that policies and programs recognize both the individual within the context of the family and the needs of all the members.
To provide direction and guidance for such policy reform, a group of diverse national and state disability leaders met and developed recommendations on the types of supports families need to serve in this role, and made recommendations for advancing a national agenda on supporting the family at the Johnson Foundation’s Wingspread Conference Center in March 2011.
Click on the image above to read the 2011 Wingspread Family Support Summit Report Online
The National Community of Practice for Supporting Families Across the LifeSpan (CoP) exists to enhance and drive policy, practice, and system transformation to support people with intellectual/developmental disabilities within the context of their families and communities by:
Design the structure and functions of state service systems to include a focus on supporting families reflective of the fact that most people with I/DD are living with their families in the community.
Develop and fund National Supporting Family Initiatives that explore principles, practices, and data indicators that will inform practice and policy related to supporting families across the lifespan.
Develop a National Data Collection Initiative with consistent and uniform data to identify the impact on families and people with I/DD, and the cost-effectiveness of supporting families across local, state, and federal systems.
Elevate the recognition of the role of families and the need for supporting families within key Federal policies and national programs.
Use the blue “toggle” arrows below to open each section and explore the 2011 Wingspread Family Support Summit Recommendations.
A collaboration between the Community of Practice for Supporting Families, University of Missouri Kansas City Institute for Human Development (UMKC-IHD) and
the National Association of State Directors of Developmental Disabilities Services (NASDDDS)