(Excerpt from the report)
Family members provide the majority of support to people with disabilities across their lifespan. Family members often play the primary role in raising children and youth with disabilities, provide a broad range of supports to adult family members with disabilities (contributing a considerable amount of their own resources to provide care), and provide critical support to older family members, many of whom require additional support as they age.1 The Family Support Research and Training Center (FSRTC) aims to learn more about families’ needs in supporting family members with all types of disabilities across the lifespan, as well as current promising family support practices around the country.
As part of its work on the FSRTC, The Arc of the United States (The Arc), the largest and oldest advocacy organization for people with intellectual and developmental disabilities (I/DD) and their families, provided grants to seven state and local chapters of The Arc to organize coalitions aimed at improving support to all families of people with disabilities and seniors in their states. The coalitions were hosted in Arizona, California, Kentucky, Pennsylvania, Tennessee, Washington, and Wisconsin between 2015 and 2017. Two coalitions – Kentucky and Tennessee – met twice in this period due to significant coalition progress or substantial changes in the structure of family support in the state. These coalitions had the following goals:
- To discuss and better understand systemic challenges in providing family support to all families of people with disabilities in the state;
- To share promising practices in family support that currently exist in the state; and
- To develop and implement an action plan to address challenges in the state’s family support systems.