Engaging Social Support in Future Planning for Individuals with Intellectual Disabilities

Many adults with intellectual disabilities (ID) now outlive their parents due to their increased lifespan, yet families report low rates of planning for a time in the future when they will no longer be able to provide support or care. Although many barriers are known to impede planning, the factors that facilitate planning are less known. The present study examines the effect of a social support intervention on facilitating future planning in a randomized control group pilot study. Parents and guardians of adult children with ID were invited to attend a future planning workshop. All participants attended Session I of the workshop, which provided information and resources on future planning. Parents were then randomly assigned for Session II to either the control condition or the intervention condition. Several mixed analyses of covariance (ANCOVAs) were utilized to test the hypotheses. 1) The workshop improved (pre- to post-) scores on information gathering, deciding on preferences, knowledge, network engagement, and completed plans in both conditions as predicted, but did not differ between intervention and control conditions, and were not higher in the intervention condition compared to controls at 6-wk follow-up; 2) perceived social support increased from pre- to post-workshop in the intervention condition and decreased for controls, but was not significantly higher for the intervention compared to controls; 3) no effect of time or condition was found on becoming aware, avoiding future, or burden. Findings are interpreted and discussed in terms of their practical implications for improving rates of future planning for individuals with ID.