Future Planning Among Families of Individuals With Intellectual and Developmental Disabilities: A Systematic Review

Chung eun Lee, Meghan M. Burke

Research output: Contribution to journalArticle


Considering individuals with intellectual and developmental disabilities (IDD) are having longer lives and outliving their parents, future planning has emerged as one of the most important topics in the IDD field. Without future planning, individuals with IDD and their families may be at greater risk for negative outcomes such as inappropriate living conditions of individuals with IDD (e.g., institutions) and greater anxiety for families. Thus, it is important to examine future planning for individuals with IDD. The purpose of this review was to synthesize the literature about future planning among families of individuals with IDD. Specifically, the purpose was to summarize the literature with respect to: existing future plans, barriers to future planning, benefits of future planning, and correlates of future planning. A systematic literature review was conducted about future planning among families of individuals with IDD. In total, 43 studies were identified. Results indicated that few families have conducted future planning for individuals with IDD. Further, family caregivers (e.g., siblings and parents) reported different barriers. However, conducting future planning benefitted all family members including individuals with IDD. It is necessary to conduct future planning with all family members, including individuals with IDD. Further, it is critical to include individuals with IDD in research about planning. Implications for future research, policy, and practice are discussed.

Original languageEnglish (US)
JournalJournal of Policy and Practice in Intellectual Disabilities
StateAccepted/In press - Jan 1 2020



  • family caregiver
  • future planning
  • intellectual and developmental disabilities
  • systematic literature review

ASJC Scopus subject areas

  • Health(social science)
  • Public Health, Environmental and Occupational Health

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