Description: The Community of Practice: Focusing on Life Span Supports for Self-Advocates and Their Families is a learning environment for intensive exploration into current policy, practices, trends and barriers. Five states are the focus of the Community of Practice, with learning shared with the entire nation. Additionally, Missouri collaborates as the demonstration state for the project. Each state team is facilitated jointly by the state I/DD service system office and state Council on Developmental Disabilities. Self-advocacy and family organizations as well as university, education, aging, and other organizations also serve as members.
Project Contact: Michelle Reynolds, 816.235.1759, firstname.lastname@example.org
Project Period: 2012-2017
Annual Funding: $250,000
Funding Source: Administration on Intellectual and Developmental Disabilities
Applied Research: The Community of Practice (CoP) is focusing its applied research efforts on six areas of systems change strategies: Reframing, Service Innovation, Policy and Goals, Financing, Training and Technical Assistance, and Outcome Data.
Community Services and Supports: The Community of Practice is made up of a Project Leadership Team of four organizations: the National Association of State Directors of Developmental Disabilities Services (NASDDDS), the University of Missouri Kansas City Institute for Human Development (UMKC-IHD), the National Association of Councils on Developmental Disabilities (NACDD) and the Human Services Research Institute (HSRI); national partnership council, and six states. NASDDDS and UMKC-IHD partner to provide overall project coordination as well as technical assistance to state partnerships and consortia. NACDD senior staff provides technical assistance and information dissemination to State DD Council Directors. HSRI leads evaluation, state assessment, and data collection/reporting activities.
Information Dissemination: The CoP website, supportstofamilies.org houses both the national project information as well as a page for each state in the project. Members of the project management team presented at each state’s kick off meetings. Information was also disseminated at AUCD, and presented at NASDDDS Directors’ Forum and Annual Conference.
Program Need and Historical Context
Families are the core unit in our society. For individuals with intellectual and developmental disabilities, family members help them to participate in their community. Family often provides medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, the vital role of families is not fully recognized and supported in disability policy and practice. Today, there are more than 4.7 million American citizens with an intellectual or developmental disability. Most, 75%, of these individuals live in their communities without any formal disability services.
In 2011, a group of national and state leaders in the disability field came together to provide direction and guidance for the shift to focus on families. One recommendation was to develop and fund a National Supporting the Family Initiative to gain consensus on issues related to supporting families at both the national and state level. This initiative is our Community of Practice.
Consumer and Community Involvement
Core organizations that comprise the National Partnership Council (NPC) include the National Association of State Directors of Developmental Disabilities Services (NASDDDS), the National Association of Councils on Developmental Disabilities (NACDD), Parent to Parent USA (P2PUSA), Self-Advocates Becoming Empowered (SABE), the Autistic Self-Advocacy Network (ASAN), the Sibling Leadership Network and lead representatives from the Consortium for a National Agenda on Supports to Families with Members with I/DD.
Five states: Connecticut, District of Columbia, Oklahoma, Tennessee, and Washington are the focus of the Community of Practice with learning shared with the entire nation. Each state team is facilitated jointly by the state I/DD service system office and state Council on Developmental Disabilities.
Significant Project Activities and Projected Outcomes
- Selection of 5 participating states and National Kick-off in Kansas City, MO during year one
- Scaling-up activities in 5 states (CT, DC, OK, TN, &WA)
- Scaling-up activities in MO as demonstration state
- Development of a model framework for supporting families that addresses the needs of families with a member with I/DD across the lifespan and supports states to develop and sustain exemplary practices supporting families.
Faculty and staff from UMKC-IHD partner with NASDDDS to provide overall project coordination and technical assistance to state partnerships and consortia. The Institute provides technical assistance to Missouri’s Division of Developmental Disabilities to develop a strategic plan that focuses on increasing individualized supports, community living, employment and family supports across the lifespan.
- Supportstofamilies.org website
- Community of Practice Overview
- TASH Webinar
- AAIDD poster and post-conference session (June)
- State and national consensus on a national agenda for improving support for families with I/DD.
- Enhanced national and state policies, practices, and sustainable systems
- Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems