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Supporting Families Community of Practice Evaluation

Improvements in Performance: Crystal’s Story

“Charting the LifeCourse has opened up a life full of possibilities allowing us to dream about what our 

good life can look like.” –Crystal

Overview

In 2012 the Administration for Community Living (ACL) funded the development of a National 

Community of Practice for Supporting Families (CoP) to help state agencies and stakeholders, 

such as families, make systemic changes that positively impacts individuals with intellectual and 

developmental disabilities (I/DD) and their families. The CoP is driven by a set of principles that 

comprise the Charting the LifeCourse (CtLC) framework designed by and for families through the 

University of Missouri-Kansas City (UMKC)-Institute for Human Development. The core belief of 

the CtLC framework is that all people have the right to live, love, work, play and pursue their life 

aspirations in their community.

In 2017, ACL funded an evaluation of the 

CoP to identify measurable outcomes 

achieved by the sixteen participating states. 

The evaluation uses five categories to 

evaluate the benefits of the CoP and CtLC:

sharing information and creating partnerships, 

increasing knowledge, changing practice, 

improving performance, and redefining 

success. This document highlights themes 

observed across states that relate to the fourth 

category: improving performance.

Themes across States

Several themes in the area of improving performance emerged across all sixteen states 

participating in the evaluation. States noted that increased involvement from families, 

communities, and state leadership in the CoP leads to behavior changes, including how families 

and persons with I/DD are supported. Increased efficiency of state service systems was also cited 

as an area of improvement. States revealed that people are accessing community-based services 

more often and with greater ease. Instances of policy change have often led to reduced waiting lists 

and processing times for individuals that receive services.
Final Draft Personal Story

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Crystal’s Story

Crystal’s story provides an example of how the CoP and 

CtLC promotes less reliance on formal supports. Crystal used 

CtLC tools, including the Integrated Supports Star and Life 

Trajectory worksheet, to help her re-imagine the types of 

supports that work best for her family.

Like many parents, Crystal envisions a colorful life for her two sons, Conner and Peyton that includes 

opportunities to make friends and experience inclusion and independence. In the past, they relied 

heavily on formal supports, separating them from their peers and community. Crystal was often 

frustrated with the gap between traditionalsupport services offered to her and what her family 

actually wanted and needed for her sons to live their best lives.

Crystal heard of CtLC, but did not recognize its benefit until she witnessed firsthand through her work 

on the Family Partnership Program the value it generated for other individuals and their families. She 

decided to complete the Life Trajectory worksheet and Supports Star with her children and found that 

it helped her to construct a clear vision. She was able to communicate her family’s needs more clearly 

during service planning meetings, challenging the school’s conventional support model. The CtLC tools 

supported both parties in re-imagining possibilities.

In particular, CtLC supported Crystal in two ways. The first was making the case for inclusion. Initially, 

a one-on-one aide accompanied Peyton throughout the day. Using the CtLC tools, Crystal and the 

school came up with an alternative solution to support inclusion. Peers throughout the school now 

assist Peyton during the day eliminating the support strategy that isolated him from his peers. The 

second was making the case for independence. Conner’s vision for a good life includes living on his 

own someday. Instead of having an at-home aide monitor him after school, Crystal used the supports 

star to brainstorm ways to increase his independence while also keeping him safe. She found an iPad 

application that Conner now uses to stay in touch while she is away from home, giving Conner the 

opportunity to develop self-management skills required to live on his own someday.

In summary, Crystal would not have considered these options for her sons without exposure to the 

CtLC framework. The framework helped her to organize her thoughts and more effectively 

communicate her wishes when navigating service options for her sons. Now, both Peyton and Conner 

rely less on formal supports to help them achieve their goals.