The Problem:
More people with developmental disabilities (DD) are outliving their parents and family caregivers. As families age, adults with DD often want to help care for their loved ones. However, many have not had opportunities to learn about caregiving, end-of-life issues, or how to support aging family members. People with DD need information and training so they can take part in important family decisions and play active roles in supporting their families.
Action:
The project, coordinated by the Alamo Area Council of Governments, provides training and an educational curriculum to help adults with DD build caregiving skills. A total of 104 individuals with DD have learned practical ways to support aging family members, including basic health and safety skills. The program also teaches self-care strategies to help participants manage stress and avoid caregiver burnout while supporting their loved ones. Seventeen participants in focus groups reported they were actively using what they learned in their home.
Results:
Adults with DD are gaining skills and confidence to help care for their aging family members. One participant shared that learning CPR helped them feel prepared to respond in an emergency. Families are also seeing new possibilities. One parent said, “I had never thought about having him step up when one of us is not feeling well. This program opened my eyes to the reality that my son does want to help us when we are sick.” The project is helping families recognize the meaningful role adults with DD can play in supporting their loved ones.
Unique Role of the Council:
The Council developed this project using lessons learned from a previous TCDD initiative that supported over 450 caregivers and 2500 community providers to better support older adults with DD, helping expand the focus to include adults with DD as caregivers.