The problem:
Many people with intellectual and developmental disabilities (I/DD) rely on aging parents or family members for support. Often, these caregivers are the only people who know important information about the person’s needs, services, daily routines, and future plans. When a caregiver becomes unable to provide support or passes away, people with disabilities can face major disruptions in care and services during an already difficult time.
Action:
The California State Council on Developmental Disabilities (SCDD) helped develop and expand the Life Care Portfolio statewide. The Council adapted the tool so it works with California’s services, resources, and laws. SCDD also worked with regional centers, community organizations, and other partners to raise awareness and encourage families to use the portfolio to plan for the future.
Results:
SCDD helped make the Life Care Portfolio available to 3,700 families throughout California in both print and accessible digital formats. Key partners have provided LCP training to 1,930 people. Hundreds of people with I/DD and their families have used the portfolio to document important information, discuss future plans, and prepare for unexpected life changes. The project has helped families understand that planning for future caregiving needs is an important part of supporting people with disabilities throughout their lives.
Unique role of the Council:
The Council serves as a trusted resource for people with I/DD, families, and community organizations. Its strong relationships and statewide reach allowed it to bring partners together, promote the Life Care Portfolio, and help families access planning tools that support long-term stability and continuity of care.