For more than a decade, families, advocates, and disability leaders have worked together to strengthen supports for people with IDD and their families across the lifespan.
Families play a vital role in supporting people with intellectual and developmental disabilities (IDD) to live in their communities and pursue independence, inclusion, and full participation. Effective policies and programs must recognize both the individual within the context of their family and the needs of family members who provide support throughout the lifespan.
In 2011, a diverse group of national and state disability leaders came together to identify what families need and how systems could better support them. Their recommendations became Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities, which established a framework for advancing family support across the country.
One of the Agenda’s key recommendations was to develop and fund national initiatives that could explore promising principles and practices, identify meaningful data, and inform policy and systems change. That recommendation led to the creation of the Community of Practice for Supporting Families, bringing states together to learn from one another, test new approaches, and strengthen supports for individuals with IDD and their families.
In 2022, national and state leaders came together again to reflect on the progress made since 2011 and identify what was needed to move the work forward. The resulting Continuing the Conversation: A National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities built on more than a decade of learning and established recommendations for the next phase of the movement.
Those recommendations helped create the National Collaborative for Supporting Families, which continues to connect people and organizations working to improve supports for individuals with IDD and their families. Its Steering Committee provides a space for connection, shared learning, and information exchange among systems change leaders.
The National Collaborative also hosts the Best Practice Series, a quarterly virtual webinar that explores key recommendations from the National Agenda. Each session brings together perspectives from grassroots advocacy, community-based practice, state service systems, federal policy, and research, connecting national priorities with the people and organizations putting them into practice.
*blue space is a term coined by Hanns Meissner in the book Creating Blue Space, and references intentional space to create innovation in the midst of day to day concerns and operations