Family Support & Leadership Area of Emphasis
Within the Family Support and Leadership Area of Emphasis, the Waisman Center UCEDD works to promote and strengthen the participation of families that include a person with disabilities in partnerships with professionals and providers, community members, and elected officials. With their participation in family support and leadership-building activities, families are able to assume a role in the improvement of systems of supports and service for people with disabilities and are an invaluable asset to providers and policy makers. Best practice recognizes that family members and individuals with disabilities provide a perspective critical to the successful development of effective policies and practices. Family involvement will increase the likelihood that systems of support and services are helpful, effective, and efficient and provide the greatest possible flexibility regarding the nature and use of services and support and maximize community inclusion and natural supports.
Family Support is a philosophy, a way of delivering services, and a way of organizing systems to support families in ways that maximizes their capacity, strengths, and unique abilities so they can support, nurture, love and launch individuals with disabilities within their family. Resources are allocated in ways that maximize the flexibility and responsiveness to unique and individual needs of families to accomplish this.
Leadership skills are necessary for family members and people with disabilities to be effective advocates for themselves and others. In order for family supports to be effective, families need to be involved at all levels in the design, implementation and evaluation of systems of support. Families need support to be knowledgeable and effective supports for themselves and individuals with disabilities and to engage with others outside their family to build inclusive communities and meaningful lives for individuals with disabilities. Family input is essential to build and evaluate effective and responsive systems of support.
Within this Area of Emphasis, the UCEDD provides training to increase leadership skills, understanding of how and where to apply those skills, coordinates projects and grants to support family involvement in systems change efforts and serves on a wide range of local, state and national committees to inform and support the creation of family support policies that are effective, efficient and responsive to the needs and preferences of individuals with disabilities and their families.
Challenges and Opportunities
- Training. Families are essential for securing equality of opportunity for their members with disabilities and launching them toward economic self-sufficiency, independent living, and full participation in American society. While states have put robust personnel preparation systems in place for public education and early intervention, we continue to find it difficult to build the infrastructure necessary to provide the information, training and support to families in this role.
- Funding. Like many public supports for people with disabilities, funding for Family Supports has not kept pace with the need for assistance. States have increasingly looked to Medicaid as a source of funding. While helpful in meeting some of the needs of an individual with disabilities Medicaid lacks the flexibility and creative solutions that may be needed by families and often focuses on the individual with disabilities rather than the family.
- Support for Community Living. National trends show that individuals with disabilities increasingly are living with their families far into adulthood, often lacking access to resources to live outside the family home. In a recent report by Charlie Lakin the number of adults with intellectual disabilities living in their family home has grown steadily from 35% in 1998 to 44% in 2006 (Trends & Milestones, edited by K. Charlie Lakin and David Braddock, 2009). This trend only increases the need for a well designed family support system.
- Family- and Participant-Directed Supports. As individuals with disabilities reach adulthood it becomes important to distinguish between support for family caregivers and support for the individual with a disability and to recognize the need for both. Family support and self-determination are related but not identical strategies for family and personal autonomy and state policies and programs and professional practice should treat them as complementary activities and policies.
- Self-Determination. The self-determination movement has brought focus to the importance of individual’s with disabilities decision making about the use of resources. As self-directed services gains popularity it becomes increasingly important to understand the family context within which many people with disabilities are supported and to seek ways to nurture the supportive role of families.
Direct Services to Individuals and Families
- The Waisman Resource Center provides information and assistance to callers and visitors to the Waisman Center on a wide range of topics including health benefits, partnerships with schools and doctors, community supports and services and recreation.
- Family Village is a site for individuals with disabilities and their families. Links to thousands of sites related to developmental and related disabilities.
- Family Support 360 has materials in Spanish and English developed by the Wisconsin Family Support 360 project.
- MCH LEND (Leadership Education in Neurodevelopmental and Related Disabilities) is a graduate-level leadership training program that is focused on children with neurodevelopmental and related disabilities.
Community Training and Technical Assistance
- Parents as Leaders (PALs) is a leadership program for parents of children birth through six years of age with special needs. Parents and/or caregivers meet 4-5 times over the course of a year and learn about resources, gain leadership and advocacy skills, and meet key leaders. There is no charge for families.
- Dane County Self-Directed Services Initiative provides useful information pertaining to Dane County's Slef-Directed Services (SDS) program to consumers, guardians, family and friends.
- LOV-Dane is developing a county-wide family network, as well as a network of community partners to work on common priorities to reach our goals.
- Advisory Group Membership. UCEDD staff and faculty serve on the following committees and boards relevant to this Area of Emphasis:
- Association of University Centers on Disabilities, Special Interest Group on Family Support, Co-Chair.
- Department of Health Services, Council on Children’s Long Term Supports, Chair.
- Survival Coalition, Member.
- Department of Public Instruction, Wisconsin Statewide Parent Educator Initiative Advisory Committee, Member.
- Dane County Family Support and Resource Center Board, Member.
Research and Evaluation
Sandra M. Magaña's research focuses on cultural variation in the experience of caregiving for persons with developmental disabilities and mental illness.
Marsha Mailick research is on the life course impacts of disability on the family. How lifelong caregiving affects the well-being of parents and siblings of individuals with disabilities, including autism, Down syndrome, and schizophrenia.
Family Support & Leadership Products
The Developmental Disabilities Assistance and Bill of Rights Act of 2000.PUBLIC LAW 106-402--October 30, 2000, 114 STAT. 1677 - Children With Families of Disabilities Support Act of 2000. TITLE II--FAMILY SUPPORT. http://www.acf.hhs.gov/programs/add/ddact/DDII.html
Trends & Milestones. Edited by K. Charlie Lakin and David Braddock. Family Support Services for Persons with Intellectual and Developmental Disabilities: Recent National Trends. Intellectual and Developmental Disabilities, Volume 47, Number 2: 152–155 April 2009.