Collaborators: Tamar Heller, University of Illinois at Chicago; Joe Caldwell, National Council on Aging. Collaborating institutions and organizations: Lurie Institute for Disability Policy at Brandeis University, the National Resource Center for Participant Directed Services at Boston College, the Research and Training Center on Community Living at the University of Minnesota, Easter Seals, the Arc, the National Alliance for Caregiving, and the Sibling Leadership Network

Family members provide the majority of support to people with disabilities across the life course and contribute a considerable amount of their own resources to provide this care. Family care giving, and notably the lack of available family support services, can have significant economic and health impacts on caregivers and the family unit as a whole.

The Family Support Research and Training Center (FSRTC) aims to engage families and stakeholders in investigating the needs of families who support their family members with disabilities, and in exploring the kinds of supports and promising practices that are needed for families to fulfill this important societal role. The center, based at the University of Illinois-Chicago and funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, is a collaboration of researchers and organizations who are focused on synthesizing and generating knowledge about the needs and experiences of families who provide support to children and adults with disabilities across the life course. Because family support is similar across different types of disability and across different age groups, we aim to bridge different resources and information across these groups to inform policies that are more cohesive and practices related to family support.

The Family Support Research and Training Center has three main objectives: (1) Define the state of science in family support; (2) Generate new knowledge in the critical policy areas of self-direction and managed care and in culturally competent peer-to-peer family interventions; and (3) Generate and implement a vision for policy and practice in family support through a national resource center.

Sandy Magaña is the principal investigator of the Family Support Research and Training Center. Upon her move to The University of Texas at Austin in 2017, Tamar Heller became the primary principal investigator at the University of Illinois-Chicago, the center’s home. This subcontract allows Magaña to continue in her leadership role.

Funding for this project was made possible by the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT50320-01-00. The views expressed in written project materials or publications do not necessarily reflect the official policies of the Department of Health and Human Service or imply endorsement by the U.S. Government.