The Community of Practice for Supporting Families of Persons With Intellectual and Developmental Disabilities.
State-level Communities of Practice using Charting the LifeCourse can shift policy and practices to better support families of individuals with IDD.
01Research in Context
What this study did
Researchers talked to leaders of 16 state Communities of Practice. These groups use Charting the LifeCourse tools to help families of people with IDD.
The team asked how the groups changed state rules and daily help for families. They read notes and did interviews to find themes.
What they found
States said their teams now know more about family needs. They rewrote policies to give clearer info and faster services.
Families reported feeling heard and getting better supports. The changes stuck because state agencies kept meeting after the study ended.
How this fits with other research
Whitehouse et al. (2014) asked global experts what to fund. Family empowerment ranked in the top three. Mammarella et al. (2022) show one way to do it at state level.
Dembo et al. (2023) found many adults with IDD have hidden mental-health needs. CoPs could add this topic to their future work.
Lee et al. (2024) showed kids in poorer UK areas get fewer school plans. The US CoP model offers a roadmap to close similar gaps.
Why it matters
If your state has a CoP, join it. If not, start one. Use Charting the LifeCourse visuals in team meetings. Push to add mental-health and equity checks for all ages. One hour a month can shift policy faster than years of solo advocacy.
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02At a glance
03Original abstract
It is important to continuously support families to improve the lives of people with intellectual and developmental disabilities and their family members. Using a life course approach to address strengths and needs of families, a National Community of Practice, infused with the Charting the LifeCourse framework, focused on systems change to improve policy and practices to enhance the lives of families. A qualitative analysis used the Value Creation framework to evaluate both process and product outcomes of 16 state communities of practice as to changes in knowledge and practices. Results emphasize the relative effectiveness of aspects of policy and overarching practices designed to support people with disabilities and their families in participating states.
Intellectual and developmental disabilities, 2022 · doi:10.1352/1934-9556-60.2.85