Why are we focusing on families, and why now?

Families are the core unit in our society, serving as a source of support for all its members. For people with intellectual and developmental disabilities (I/DD) the role of family is unique, and often central in the support and care provided across the lifespan. Family members play key roles in identifying and securing opportunities for their family members to participate within their community in meaningful ways and ensuring access to self determined lives. Parents and other family members of people with I/DD often provide 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. They rely on their families for varying levels of support to have the lives they want to have. Of the 25% that are receiving services, over half live with their families, and in some state, that number is as high as 80%.

In 2011, a group of national and state leaders in the disability field came together at Wingspread Conference Center to provide direction and guidance for the shift to focus on families. One of the recommendation was to develop and fund a National Supporting the Family Initiative. The initiative is to gain consensus on issues related to supporting families at both the national and state level, that would inform practices and identify policies for advancing family supports. This initiative would also focus on working together to further define and build collaborations within and outside the disability system for supporting families across the lifespan, ensuring that community integration is the standard of all the work. This initiative is our Community of Practice.


Project Goal

To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan.


Project Outcomes

  • State and national consensus on a national framework and agenda for improving support for families with members with I/DD.
  • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families.
  • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.



View the National Community of Practice for Supporting Families Year Three Report