Community of Practice: Supporting Families Throughout the Lifespan


A Community of Practice

The Community of Practice (CoP) for Supporting Families of Individuals with Intellectual & Developmental Disabilities involves working with states to build capacity across and within states to create policies, practices and systems to better assist and support families that include a member with intellectual and developmental disabilities (I/DD) across the lifespan.

Originally funded as project awarded to NASDDDS by the Administration of Intellectual and Developmental Disabilities (AIDD) in 2012 with five states and a mentor state, the early adopting states assisted in developing a framework for systems change to enhance support to all persons with I/DD, including their families and caregivers.  The resulting approach, known as the Charting the LifeCourse framework, consists of a set of guiding principles and components necessary to establish as well as scale-up innovative approaches across a system.

The CoP for Supporting Families Across the LifeSpan expanded to ten additional states in 2016 as a NASDDDS membership option.  In addition, some of the original AIDD funded states have chosen to continue with the CoP as a membership option when the federal funds ended.   

NASDDDS and ExpansionUniversity of Missouri Kansas City Institute for Human Development (UMKC IHD) partner as the National Project team to provide leadership, work to impact national policies, develop products and tools, and provide technical assistance to states.   The technical assistance provides:

  • On site technical assistance
  • Innovation workgroups
  • Webinars
  • State sharing
  • Individualized technical assistance
  • Annual meetings and conference
  • Tool and product development
  • Specialized instruction

 CoP participating states have built capacity and made several supporting families systems changes:

  • Retooling the “front door: into systems
  • Improving cultural considerations in supporting families and people with I/DD
  • Guiding and influencing policymakers
  • Helping to shape waivers/funding mechanisms
  • Shifting how professionals and families approach individual support planning
  • Enhancing family networks
  • Conducting outreach
  • Strengthen the role of families in all models of supports and services

 For more information, contact Barbara Brent at  Visit the project website at