Supporting Families Summit: Celebrating 10 Years

January 12, 2022

Nearly 53 million people in the U.S. today provide support for a family member with a disability or someone aging. As caregivers to those with a disability, or who are aging, family members have complex support roles that extend beyond activities of daily living assistance. They often include financial, medical, and technical supports and coordination across all systems of support.

Family caregivers can experience financial strain, unemployment, physical and mental depletion, and social isolation.

In recognition of the complex roles of family caregivers, and the challenges they face, leaders in the disability field came together at the 2011 Wingspread Summit to develop policy recommendations to improve supports for family caregivers.

UMKC-IHD's Associate Director, Sheli Reynolds played a role in helping to plan the Wingspread Summit and later co-authored a report, "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities."

Broad strategies from the report included increasing recognition of the family’s role in developing policies and programs and designing state service systems to focus on supporting families. 

“The Family Support Movement exploded out of the Wingspread Summit and the proceeding report to become this incredible framework for supporting people with I/DD,” Wanda Felty of the Oklahoma Center for Learning and Leadership/UCEDD said. “It has included acknowledging and honoring the fact that life is always within the context of the family.”

In 2012, the Administration for Community Living used the recommendations from the report to award a five-year grant to fund the Community of Practice for Supporting Families of Individuals with Intellectual and Developmental Disabilities (CoP).

The first phase of the CoP was awarded to the National Association of State Directors of Developmental Disabilities Services (NASDDS) and a core project team that included UMKC-IHD and the Human Services Research Institute.

In addition to the project team, six states collaborated to create policies, practices, and systems to assist families who support a member with a disability. The states included Connecticut, District of Columbia, Oklahoma, Tennessee, Washington, and Missouri, which served as a mentor state for the other members of the CoP.

“The movement has increased awareness that most people with disabilities live with, and receive supports from, their families,” Colleen McLaughlin, a member of the CoP from New Jersey, said. “It also further supports the need for a wide array of support options that reach beyond traditional models and for us to be innovative in our approach.”

As of 2021, nearly 20 states have joined the CoP for Supporting Families. The CoP continues its work to enhance and drive policy, practice, and system transformation to support individuals with disabilities and the family members who support them. For example:

  • Oklahoma convened a legislative caucus that assured $2 million will go toward Medicaid services for people on a waiting list.
  • The District of Columbia enacted the Disability Services Reform Amendment Act of 2018 to enhance supported decision-making.
  • In Washington state, the Individual and Family Services Waiver allowed the state to admit 5,000 more people into services.

Earlier this month UMKC-IHD, The NASDDS, and the Administration for Community Living hosted the Supporting Families Summit to reflect on how far the CoP has come, and to plan for the future.  

“It is imperative to continue to grow the work and connections of the CoP, because the terrain of family support is rapidly changing,” Celia Schloemer, a Family Support Coordinator at the University of Cincinnati Center for Excellence in Disabilities, said. “We need to continue our focus on reaching all families of individuals with I/DD. Many families are not connected to services systems, so it is key for those supporting families through other systems, like education or mental health systems, to join us in the movement so we can reach more families.”