Self-Advocate and Family Member Experiences With Supported Decision Making

Intellect Dev Disabil. 2024 Oct 1;62(5):392-405. doi: 10.1352/1934-9556-62.5.392.

Abstract

Supported decision making (SDM) is a needed focus of policy and practice to enhance opportunities for people with disabilities to exercise self-determination as they are supported to make decisions about their life. This study used content analysis to analyze five focus groups comprised of 27 adults with intellectual and developmental disabilities (IDD) and 16 family members to understand how people with IDD use supports for decision making and how families support decision making. People with IDD and family members described a range of strategies and supports they used for decision making, including engaging trusted supporters, accessing technology, and using early experiences to build decision-making skills. Findings from this research can inform development of practices and policy to enhance use of SDM in research, policy, and practice.

Keywords: adults with intellectual and developmental disabilities; family members; focus groups; strategies and supports for decision making; supported decision making.

MeSH terms

  • Adult
  • Decision Making*
  • Developmental Disabilities* / psychology
  • Family* / psychology
  • Female
  • Focus Groups*
  • Humans
  • Intellectual Disability* / psychology
  • Male
  • Middle Aged
  • Personal Autonomy
  • Qualitative Research
  • Young Adult