Future planning for adult children with disabilities: The impact of long-term supports and services and caregiver psychological well-being

Abstract

Research shows that as of 2015, in the United States, an estimated 71% of individuals with a developmental disability or mental illness live with a family caregiver (Heller, 2017). The problem addressed in this study is that many of those caregivers are 60+ years of age and are facing end-of-life decisions about their adult family member without adequate long-term supports and services. It is important to look at this population from an ecological framework. The purpose of this dissertation is (1) to evaluate the relationship of the aging caregiver’s psychological well-being to his/her future planning for adult children with a developmental disability and/or mental illness; (2) to evaluate the relationship of the adult child’s receipt of or need for long-term supports and services to the aging caregiver’s motivation to plan for the adult child’s future after the caregiver is no longer able to provide care. A subsample of graduates and siblings for this study was drawn from the original Wisconsin Longitudinal Study that studied randomly selected graduates from all Wisconsin high schools in 1957 over their lifetime until 2011. Even though the results of the analysis were not statistically significant, this study provides justification for using an ecological framework from which to study implications for public policy, practice and research into future planning strategies for individuals with DD/MI.