We want to tell you about Family Driven Planning – a strategy to better support individuals with DD and their families.
Hillside Family of Agencies is a local agency that serves individuals with DD. Hillside developed Family Driven Planning as a way to increase individuals’ support and quality of life by: (1) identifying family members and other people who could be a support; (2) engaging these persons to consider how they may be able to support the individual and the caregivers; and, (3) developing a long-term plan for involvement in the individual’s life.
Here is 1 success story: Abdul is 18 years old. For many years he only had contact with his mom who was in poor health, and his sister with whom he had a strained relationship. Abdul had not seen his dad since he was 3 and very much wanted to locate and connect with his dad and his dad’s family. Through Family Driven Planning and careful information exchange, we were able to locate his dad and family members that Abdul had never known. Abdul gradually reconnected with his dad and also connected to his large extended family. The reconnection started with Abdul attending family picnics and holiday gatherings, fishing with his father and grandfather, and working with his cousin. Just recently Abdul moved in with his dad and they both live very close to several extended family members. Abdul continues to see his mom and his sister, and his sister has also reconnected with their dad.
Hillside is doing a study of Family Driven Planning to better understand its ability to increase individuals’ quality of life through increased support networks. We are asking 70 individuals with DD and their families to participate in this study. Individuals are eligible to participate if they are: (1) currently eligible for IRA residential services or currently lives in an IRA and would like to live more independently; (2) 8 to 25 years old; and, (3) eligible for Medicaid.
Participation in the study is voluntary. Individuals who agree to participate will be interviewed at two times – once at the beginning of the study and once about 6 months later – either at a Hillside office or at a location convenient to the individual. Interviews will include two surveys that include questions on supportive relationships, quality of life, and Medicaid services. Individuals will receive $5 gift cards for each interview. Half of the participants will participate in Family Driven Planning right away, and the other half will be on a waiting list for these services (for whom we hope to offer services after 12 months on the waiting list). There are no significant risks or benefits to the individuals who participate.
The primary researcher is Annette Semanchin Jones, PhD, Assistant Professor, School of Social Work, University at Buffalo. If you have questions or if you are interested in this study, please contact her at (716) 645-1862 or at amsemanc@buffalo.edu.
For more information on Family Driven Planning, please contact Michelle Belge, Director of Hillside Institute for Family Connections at 315-935-6701 or Dan Lesinski, Executive Director of Hillside’s Disability Services at 585-654-1465.
