Tamar Heller1, Alan Factor. 1. Rehabilitation Research and Training Center on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL 60608-6904, USA. theller@uic.edu
Abstract
BACKGROUND: This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. OBJECTIVES: The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. METHODS: Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. RESULTS: The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. CONCLUSION: The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.
BACKGROUND: This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. OBJECTIVES: The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. METHODS: Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. RESULTS: The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. CONCLUSION: The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.
Authors: Vanessa E Chicas; Caren Steinway; Jack Chen; Matthew C Schwartz; Charmaine Wright; Michelle Cornacchia; Thomas W Davis; John C Berens; Ilka Riddle; Jason F Woodward; Sophia Jan Journal: J Appl Res Intellect Disabil Date: 2022-03-11