FY 2003 Double Jeopardy Policy Survey Results

Publisher: Ohio Department of Aging, Older Americans Act Programs Division
Published Date: September 2003

Executive Summary

The Ohio Department of Aging (ODA) was awarded two grants by the Administration on Developmental Disabilities (ADD) under its Family Support Program, projects of National Significance. The awards were received in 1999 and 2001. ODA was granted an extension for both projects and the second grant extension ended on May 31, 2003. ODA, the official grantee and lead agency, worked in collaboration with the Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD) and the Ohio Developmental Disabilities Council (ODDC). One of the grant requirements was to conduct a policy study.

The project addressed the issue that confronts older family members, usually parents, age 60 and older, who care for sons and daughters who have MR/DD at home. This informal care has contributed to the increased life expectancy and reduced the cost of care that the formal system would otherwise have borne, for individuals who, in an earlier time, would likely have lived in institutions.

The project was named Double Jeopardy because of the twin challenges for the aging caregivers:

Continuing to care for their aging sons and daughters with MR/DD as "perpetual parents" and
Confronting their own needs for care and support as they aged.

The project had learned from the literature and focus groups that many caregivers, despite awareness of the importance of future planning, have not planned for the time when they could no longer care for their loved ones, or had died. Some were unaware of the estate planning issues that should be considered to safeguard current and future eligibility for Medicaid and other needs-based programs. The system would also benefit if more families had written plans for their loved ones, as individuals with MR/DD with future plans were more likely than individuals without plans to need emergency services from the formal service system at time of a caregiver's incapacity or death. ODA, ODMRDD and the ODDC chose to conduct the required policy study/survey on the incentives that would motivate older caregivers to plan for the future of their loved ones with MR/DD.

Through 22 county boards of mental retardation and developmental disabilities, ODA surveyed 1,558 of the 2,492 families in the target population. The survey included two multiple choice and nine multiple response questions. The results are expressed in graphs and tables of raw data. The nine multiple response questions are discussed in order from highest to lowest percentages of responses. Of the incentives presented, having enough choices of where their child would live and what support and services would be available were selected by more families than any other incentive presented.

This report identifies seven implications for policy changes that would help motivate families to establish or update future plans for their loved ones with mental retardation or developmental disabilities.

Download and read this publication

This publication is available as an Adobe Portable Document Format (PDF) file. The file size is given in parentheses. Larger files (200kb and up) may take a long time to load, depending on your Internet connection. Adobe Acrobat Reader or equivalent software is required to view this file.

Download and read this publication… (261kb)

Download Acrobat Reader…