Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities

Intellect Dev Disabil. 2018 Apr;56(2):90-100. doi: 10.1352/1934-9556-56.2.90.


Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.

Keywords: family; future planning; intellectual disability; services.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Developmental Disabilities*
  • Female
  • Health Services Accessibility
  • Health Services Needs and Demand*
  • Humans
  • Intellectual Disability*
  • Male
  • Middle Aged
  • Parents*
  • Patient Care Planning*
  • Planning Techniques