Family Driven Planning: Pilot Study to Build, Transform, and Sustain Connections for Individuals with Developmental Disabilities

Background: Youth with supportive adult connections have been found to have improved outcomes across well-being domains. Family Finding is a strategy used in child welfare to engage family members and other caring adults in supporting youth in care (Campbell, 2010). This project included the development and pilot testing of a newly adapted Family Finding model called Family Driven Planning (FDP). FDP consists of five steps toward identifying and engaging a supportive network of caring adults for individuals with developmental disabilities (DD) to increase their overall circle of support. The current study examined the impact of FDP on 1) the quantity and quality of family and other natural supports for youth and 2) the overall quality of life for youth with DD.

Methods: This mixed-methods pilot study included 36 individuals who participated in FDP and 22 individuals in a comparison group. Participants were between the ages of eight and 30, eligible for DD services, and had three or fewer supportive adults. We collected data from participants in the intervention group before the intervention (Time 1) and again at discharge (Time 2), and from the comparison group participants at baseline and approximately six months after baseline. We measured Quality of life using the Quality of Life Questionnaire (QoL) (Schalock & Keith, 1993) and the quantity and quality of family and natural supports using the Connections Scale (CS). The CS was adapted from the Youth Connections Scale, a measure of connectedness for youth in child welfare (Semanchin Jones & LaLiberte, 2013). Qualitative interviews were also conducted with FDP workers, youth, caregivers, and other service providers (N = 13).

Results: On average, participants in the intervention group were 19.6 years of age and most lived in residential settings (N = 30). CS scores increased from Time 1 (M = 39.91) to Time 2 (M = 51.67; t(32)=5.42, p<.001). Scores on the QoL increased slightly from Time 1 (M = 78.07) to Time 2 (M = 80.43), particularly in the Empowerment and Social Belonging domains, both of which approached statistical significance. Although Time 2 scores increased more for the intervention group than they did for the comparison group, these differences were not statistically significant. Qualitative findings highlighted several facilitators of success, including perseverance of FDP workers and buy-in from service providers and legal guardians, as well as having transportation resources to support on-going relationships for youth in residential care. Re-connecting with family members improved social skills for many participants and increased their social interactions at home and within their communities. Finally, six individuals in FDP moved from higher to lower levels of care.

Implications: The quantitative and qualitative analyses indicated that many youth with DD who participated in FDP increased the frequency and quality of time spent with family members, processed feelings of grief and learned about their family histories, and increased their autonomy and self-advocacy skills. Results of this pilot project highlight the importance of increasing the circle of support for individuals with DD, particularly for individuals who identify re-connection as an important goal.