PIs: Tamar Heller, PhD, UIC Department of Disability and Human - - PowerPoint PPT Presentation

PIs: Tamar Heller, PhD, UIC Department of Disability and Human Development Sandy Magaña, PhD, Steve Hicks School of Social Work, University of Texas at Austin, and Joe Caldwell, PhD, National Council on Aging

Family Support Research and Training Center (FSRTC) at the University of Illinois at Chicago is funded 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. 10/1/2014-9/30/2019

1.

Define the state of science on family support

2.

Generate new knowledge in the critical policy areas

• f self-direction and managed care; and in cultural

competent peer-to-peer family interventions

3.

Generate and implement a vision for policy and practice in family support through a national family support resource center

4.

Contribute to improvements in community living, participation, health, function and other outcomes for individuals with disabilities who are supported by family members

Research Partners

National council on

Aging

Lurie Institute for

Disability Policy at Brandeis University

National Resource

Center for Participant Directed Services at Boston College

Technical Assistance

and Dissemination Partners

Easter seals National Alliance for

Caregiving

Sibling Leadership

Network

RTC on Community

Living at the University

• f Minnesota

1.

Development of a Strategic Plan for Family Support Research

Sandra Magaña, PI; Brian Grossman, Co-PI

2.

Identifying Promising Practices in Family Support Services

Joe Caldwell, PI; Katie Arnold, Co-PI

3.

Family Member Roles and Well-being in Self-directed Waiver Programs

Marji Erickson Warfield, PI; Susan Parish, Co-PI

4.

Understanding Experiences, Trends, and needs in Self-Directed Support Programs

Kevin Mahoney, PI; Ellen Mahoney, Co- PI

5.

Family Support in Managed Care

Tamar Heller, PI; Randall Owen, Co-PI

6.

Parents Taking Action: A parent training program for Latino Families of children with ASD

Sandra Magaña, PI, Miguel Morales, Co-PI

Short-term goal:

To gather input about family support (caregiving)

research topics from multiple stakeholder groups

Focus on different stakeholders Focus on people of color, racial/ethnic diversity Focus on hearing from users (consumers) Family broadly defined

Long-term goal:

To develop a national family support research

agenda

R1: Developing a National Strategic Plan For Family Support Research

Sandy Magaña & Brian Grossman

Methods

R1: Developing a Strategic Plan for Family Research

Generate preliminary research topics Produce literature reviews Develop and implement stakeholder survey Engage stakeholders to provide research topics/questiona via IdeaScale, phone, pen/paper Survey stakeholders to prioritize research topics/questions Generate initial research priorities Identify and recruit panel of family support experts Convene stakeholders to finalize prioritization Reach consensus

• n research

topics, areas, questions Key

• Stakeholder Activity
• RRTC Staff Activity
• Outcome

Grossman, B., & Magaña, S. (2016). Introduction to the

special issue: Family support of persons with disabilities across the life course. Journal of Family Social Work, 19 (4).

Vanegas, S. & Abdelrahim, R. (2016). Characterizing the systems

• f support for families of children with disabilities: A review of the
• literature. Journal of Family Social Work. 19, 286-327.

Burke, M., Patton, K., & Lounds Taylor, J. (2016). Family Support: A

review of the literature on families of adolescents with disabilities. Journal of Family Social Work. 19, 252-285.

Barrio, C., Hernandez, M., & Gaona, L. (2016). The family

caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, an traumatic brain injury. Journal of Family Social Work. 19, 328-347.

Grossman, B. & Webb, C. (2016). Family support in late life: A

review of the literature on aging, disability and family caregiving. Journal of Family Social Work. 19, 348-395.

The goal is to identify promising practices in family

support across disabilities and life course

Progress: Created report on recommendations to improve data

collection in national data

Completed environmental scan and expert workgroups

to identify and assess promising practices (focused on 28 practices

Next steps Preparing a report and webpage to highlight 28

practices

Additional practices can be added in the future Will work on revising family support taxonomy