Community of Practice for Supporting Families of Individuals with IDD

Pooling knowledge to advance best practices for supporting families

In 2012, the UMKC Institute on Human Development and the National Association of State Directors of Developmental Disabilities Services launched a National Community of Practice (CoP) for Supporting Families of Individuals with IDD to help build capacity to create policies, practices and systems to assist and support families that include a member with IDD. HSRI provides project leadership, advising on the development of the CoP and evaluating its impacts.


The CoP provides new language and heightened expectations for how policy and practice for supporting families may be improved. It also provides a platform for participants to work within their own states to press for needed reform and to exchange ideas with others.

Participation has grown from 6 states to 15 states in just five years.

  • Evaluation
  • Technical Assistance and Training

Gaining consensus

Families play an integral role in systems of support for people with IDD, helping facilitate opportunities for loved ones to live fully and participate in their communities throughout their lives. Given the critical role of the family unit, the CoP aims to build consensus on issues related to supporting families at both the national and state level. 

By centering efforts around the LifeCourse principles and framework developed by Sheli Reynolds and the University of Missouri Kansas City - Institute on Human Development (UMKC-IHD), the COP provides a platform for people to expand collaborations within and outside the disability system to improve supports for families—all the while ensuring that community integration remains the main goal of all the efforts.

Pooling knowledge

The CoP provides a support network for families, policymakers, practitioners and others to discover, implement and advance best practices for supporting families. Together, they can help enhance national and state policies, practices, and systems to improve supports to families.

The CoP also provides opportunities for states to share, replicate, and sustain exemplary practices to support families and systems.

Through the CoP, Innovations Workgroups look to support innovation—all through a LifeCourse lens—in areas such as:

  • Planning & Support Coordination: How states are addressing (or could address) support coordination practices through ISP templates and processes as well as policies and standards
  • Front Door to Supports: How state developmental disability agencies are changing (or could change) the interactions, conversations, forms, processes, and practices that intake workers have with families when they first touch the formal service system
  • Family Engagement & Networks: How states can implement successful practices that connect families, provide peer support opportunities, leverage families in statewide planning efforts, and engage families in policymaking
  • LTSS Policies & Families: How states can innovate (or further innovate) in terms of funding, policy and transformation changes to support families
  • Employment & Families: How states can support families in setting expectations and helping their family members explore the world of work and higher education 
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The CoP uses a framework for systems change based on the LifeCourse framework, which promotes the idea that all people have the right to live, love, work, play and pursue their life aspirations in the community. The outcome of systems change is supports that help individuals and families achieve a good quality of life.

The United States Administration on Intellectual and Developmental Disabilities (AIDD)

Project Partner(s):

National Association of State Directors of Developmental Disabilities Services

Institute for Human Development at the University of Missouri at Kansas City

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