FSRTC State of the Science Conference 2018

The State of the Science (SOS) Conference for Family Support Research was held on June 11, 2018 in Washington D.C. The conference was coordinated by the Family Support Research and Training Center (Department of Disability and Human Development, University of Illinois at Chicago) which is funded through the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The SOS Conference was the culmination of over three years of research on family caregivers related to services and supports, interventions, best practices and identification of gaps in the research and recommendations to advance research in the field.

Below is the conference agenda and links to the presentations. In the future, we will augment each section with either video or audio from the conference.

Conference Agenda


Times Presentation Title Presenter
9:00–9:15 Opening/ Welcome Sandy Magaña, PhD, MSW
9:15–10:15 Keynote and Q&A Lance Robertson, Administrator and Assistant Secretary for Aging, Administration for Community Living
10:20–11:20 Panel 1: Family Support across the Life Course and Diverse Populations Moderator: Nelsinia Ramos, Wisconsin FACETS and FSRTC Advisory Committee Member
Parents Taking Action: A psychoeducational program for Latino parents of children with ASD

Sandy Magaña, PhD, MSW, University of Texas at Austin

Miguel Morales, MPH, University of Illinois at Chicago

Rare Disease Caregiving in America C. Grace Whiting, JD, President and CEO, National Alliance for Caregiving
Latino Family Caregiving and Schizophrenia

Mercedes Hernández, PhD, LCSW, University of Texas at Austin

Concepción Barrio, PhD, LCSW, University of Southern California

1:30–2:09 Panel 2: Managed Care and Family Support Moderator: Mary Lee Fay, National Association of State Directors of Developmental Disabilities Services
Managed Care and Family Support Tamar Heller, PhD, University of Illinois at Chicago
AARP Learning Collaborative on Family Caregivers and Managed LTSS Wendy Fox-Grange, AARP
2:10–3:10 Moderator: Jenny Turner, University of Missouri, Kansas City Panel 3: Promising Practices in Family Support
Identifying Promising Practices in Family Support Services

Joe Caldwell, PhD, National Council on Aging

Katie Arnold, MS, University of Illinois at Chicago

Development of an Online Course for ADRCs on Family Support Susan O’Nell, University of Minnesota
Family Support State Coalition Gatherings Jenny Sladen, The Arc
3:30–4:25 Panel 4: Home and Community Based Services and Family Support Moderator: Lynn Friss Feinberg, MSW, AARP Public Policy Institute
Predictors of Caregiver Well-Being in a Consumer Directed Medicaid Waiver Program Marji Erickson Warfield, PhD, and Hebatallah A. Naim Ali, MD, MS/IHPM, PhD Student, Brandeis University
State Medicaid Provisions that Caregivers Find Supportive: An Analysis of State Plan and Waiver Provisions in Self-Directed Programs

Ellen Mahoney, RN, PhD, and Kevin Mahoney, PhD, Boston College

4:30–4:45 Closing remarks Andrew J. Imparato, JD, Executive Director, AUCD