Deciding My Future: Experiences of Adults With Intellectual and Developmental Disabilities & Family Members Using Supported Decision Making

PURPOSE: Making decisions in daily life is critical for youth with intellectual and developmental disabilities (IDD) as they exercise their self-determination and prepare to transition from school to adult life. For many with IDD, though, their legal capacity to make decisions is removed through overly restrictive guardianship arrangements even if the person can make decisions. Research suggests that people under guardianship less likely to live in their own home and work in integrated employment. These outcomes are particularly concerning given that nationally, almost half of people with IDD are under guardianship arrangements. Supported Decision Making (SDM), where a person identifies a trusted person to help make decision and is gaining attention as an important practice as several states have passed legislation requiring SDM arrangements be considered before guardianship. Interventions are needed to prepare people with IDD and their families to use SDM. However, a critical first step is understanding how people with IDD currently use supports to make decisions and how family support decision making. Therefore, the research questions addressed by this study are: (1) What supports do adults with IDD use to make decisions? And (2) How do family members support decision making of their person with IDD?

DESIGN: We used a content analysis approach to answer our research questions. We recruited 26 adults with IDD and 16 family members (n = 42 participants) to participate in focus groups. Audio recordings of the focus groups were transcribed verbatim for analysis.

METHOD: We conducted five focus groups (3 with adults with IDD, 2 with family members). Focus group questions focused on understanding the supports adults with IDD used for decision making in three decision making domains: health, employment, and relationships. Data were analyzed using a content analysis approach where transcripts of the focus groups were coded and analyzed to allow themes to emerge from the data.

RESULTS: Themes emerged from the data pertaining to the types and frequency of supports used by adults with IDD. Adults with IDD in our study reported mainly using trusted people as supports (family, paid staff) to make decisions, primarily in the health, financial, and employment domains. Family members described actions use to support decisions, such as thinking through different options, clarifying and communicating information, and fading support to provide opportunity to develop capacity in decision making. The frequency of support varied based on family member perception of decision making capacity and opportunities provided at younger ages to make decisions. Family members who characterized their child with IDD as lacking capacity for decision making reported making more decisions for the person and reducing opportunities for decision making.

CONCLUSION: Adults with IDD use a variety of supports to make decisions in their daily life. Family members and paid staff were key supporters of decision making. Many adults with IDD described early experiences making decisions as key for learning to make larger decisions later in life. These findings represent key leadership opportunities for occupational therapists (OTs) working with youth and adults with IDD in two critical intervention areas: building capacity for decision making for youth and adults. with IDD, training caregivers of adults to enhance supports and opportunities for decision making. This presentation will discuss promising practices in these intervention areas.

IMPACT STATEMENT: Decision making is critical for the participation and transition of youth with IDD. OTs can lead practice and research efforts to promote both decision making capacity and planning for supports for decision making.

References

Shogren, K. A., Dean, E. E., Linnenkamp, B., Raley, S. K., Martinis, J., Blanck, P. (2020). Supported Decision-Making. In I. Khemka & L. Hickson (Eds). Decision Making by Individuals with Intellectual and Developmental Disabilities: Research and Practice. New York: Springer.

Linnenkamp, B. & Dean, E. (2019). Supporting decision-making: Advice and examples from a self-advocate. Impact, 32(1), 30–32. Retrieved from https://publications.ici.umn.edu/impact/32-1/supporting-decision-making-advice-and-examples-from-a-self-advocate