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Evaluation Findings Brief—Year 1 (2018­2019)

National Community of Practice (CoP) for Supporting Families

Introduction

In 2012, the Administration for Community Living (ACL) 

awarded the five-year National CoP for Supporting Families

grant to the National Association of State Directors of 

Developmental Disabilities Services (NASDDDS), who 

partnered with the University of Missouri-Kansas City 

Institute on Human Development (UMKC-IHD). The

National CoP builds capacity across and within state 

participants to improve and create policies, practices, and 

systems that better support families of individuals with 

intellectual and developmental disabilities (I/DD).

Charting the LifeCourse (CtLC)

Designed by UMKC, the CtLC 

framework is a set of principles to 

help individuals and their families 

identify and find supports, assess 

their options, and envision their 

best life. The framework is based 

on the following core belief: “All 

people have the right to live, love, 

work, and play and pursue their 

dreams in their community.”

Evaluation Approach

To assess progress towards national project outcomes and identify successful emerging practices

that improve supports for families of individuals with I/DD, ACL awarded an evaluation contract 

to New Editions Consulting and its partner, The Lewin Group (the evaluation team). The 

evaluation includes 16 states that participated in the National CoP for at least two years between 

2012 and 2018. The evaluation team classified states into three groups based on when they joined 

the national CoP and their prior experience to the CtLC framework (Exhibit 1).

Exhibit 1. Classification of States by Group

Group 1

Six original 

CoP states

Group 2

Four expansion 

states with 

prior exposure 

to the CoP or 

CtLC

Group 3

Six expansion 

states with little 

or no prior 

exposure to the 

CoP or CtLC

The evaluation team used four different tools to collect data from states: reporting tools, telephone 

interviews, site visits (to select states), and materials review (on an ad-hoc basis). Using the value 

cycle framework1

, the evaluation team analyzed data and linked specific activities with outcomes of 

interest (Exhibit 2).

1 Adapted from Wenger, E., Trayner, B., and de Laat, M. (2011). Promoting and Assessing Value Creation in 

Communities and Networks: A Conceptual Framework. Rapport 18, Ruud de Moor Centrum, Open University of the 
2

Netherlands. Retrieved from http://wenger-trayner.com/wp-content/uploads/2011/12/11-04-

Wenger_Trayner_DeLaat_Value_creation.pdf.

National CoP Project Outcomes

State and national consensus on a 

national framework and agenda

Enhanced state policies, practices, and 

sustainable systems

Enhanced capacity of states to replicate 

and sustain exemplary practices

Exhibit 2. Value Cycle Framework

Evaluation Findings by Value Cycle

Cycle 1: Immediate Value

Immediate value refers to activities that may facilitate policy and practice changes in later cycles 

and contribute to improved supports and individual outcomes.

¡ Stakeholders share information and provide support. State CoP members share 

progress towards goals, initiatives, events, and CtLC tools and resources. CoP members 

use social networking and peer-to-peer support to build community. On a national level, 

state CoPs share initiatives and information among each other.

¡ Family members and self-advocates guide the agenda. They are part of CoP leadership 

and inform service and supports, processes, and policies.

¡ States structure their organization based on needs and context. Some states have a

formal, hierarchal structure while others use informal, grassroots-led strategies. Some 

states employ the use of regional or local CoPs. On a national level, select statesreported 

benefiting from meetings and technical assistance (TA) from the national project team.

¡ Diverse partnerships engage and collaborate around a shared purpose. Partners 

include, but are not limited to, family advocacy organizations, provider agencies, 

education systems, employment initiatives, aging departments, Vocational Rehabilitation, 

University Centers for Excellence in Developmental Disabilities (UCEDDs), and 

Protection and Advocacy Systems (P&As).

In Delaware, the Division of Developmental Disabilities Services (DDDS) collaborates 

with the Division of Medicaid & Medical Assistance (DMMA) and Division of Services 

for Aging and Adults with Physical Disabilities (DSAAPD) to develop supports for 

family caregivers of individuals with Dementia and Alzheimer’s.
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Cycle 2: Potential Value

Potential Value includes use of the CtLC framework, family outreach, product development, 

advancement of current initiatives, and changes in thinking or knowledge that are expected to 

produce value in later cycles.

¡ State CoP use of the CtLC framework creates a common language. The CtLC 

framework helps individuals and families develop their vision for a good life, think about 

options, and identify supports. Organizations adopt CtLC and use the framework to 

prioritize strategies and evaluate activities.

¡ States use diverse strategies to build knowledge. State CoPs offer formal and informal 

CtLC trainings. Stakeholders integrate the framework into initiatives on assistive 

technology, employment, self-determination, and planning services.

¡ States advance new and current initiatives for growth. Focus areas include enhancing 

front door supports, including more voices in services and support planning and 

implementation, and improving employment, education, supports, and capacity building.

The Connecticut Department of Developmental Services (DDS) and Council on 

Developmental Disabilities (CDD) provide the Ambassador Series and other 

training opportunities to families, self-advocates, and professionals (e.g., case 

managers, Department of Education, and Department of Rehabilitation Services).

Cycle 3: Applied Value

Applied value refers to the ways that knowledge leads to changes in practices, such as innovation, 

new approaches, or changes in policies, programs, or services.

¡ States change policies and services to advance supports to families. Examples include 

new waivers embedded with the CtLC framework. States also implemented new waiver 

services, passed legislation, such as the Technology and Employment First Act, and

revised service eligibility guidelines.

¡ States revise forms and processes to align with the CtLC framework. States used the 

CtLC framework to revise ISPs, administrative policies and procedures, hiring and 

recruitment processes, and intake and referral processes. Several states created new staff

positions to support collaboration and reported increased capabilities.

Indiana created a Person Centered Individualized Support Plan (PCISP) that reflects 

the CtLC life stages, life domains, and strength-based supports. The state is now 

measuring the completion of PCISPs for all individuals.
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Cycle 4: Realized Value

Realized value refers to the effect of new practices from Cycle 3. Impacts include decreased 

reliance on formal services, reduced waiting lists and processing times, and better lives.

¡ People behave in new and different ways. Family members increased their involvement 

in planning and focused on what they want through the lifespan, not just what they want 

from services. Staff engaged in person-centered planning now approach the process with a 

greater focus on the individual in the context of the family unit, rather than focusing on the 

individual. Agency staff are more likely to consider the individual and family’s needs first, 

then offer appropriate service options, as opposed to only providing service options.

¡ State services operate more efficiently. More people are receiving community-based 

services with greater efficiency and access. States have reported reductions in waiting list 

and processing time due to policy changes.

Pennsylvania’s Employment First Act of 2018 expanded employment opportunities 

for individuals with disabilities. Over the last two years, there was an increase from 

12% to 16% of the proportion of the population of individuals with I/DD with 

competitive employment.

Cycle 5: Redefining Success

Redefining success refers to new strategies for measuring outcomes and program sustainability. 

Additionally, this category refers to changing goals, strategies, or system operations as a result of 

changes in knowledge capital and practice in earlier cycles.

¡ State CoPs advance new goals, strategies, and operations. States see the CtLC 

embedded into DD quality outcomes, strategic plans, and evaluation methods with an 

emphasis on community resources.

¡ States measure outcomes in new ways. This often involves embedding the CtLC 

framework into projected work plans and evaluation methods.

In Maryland, local CoP leaders voiced that national or state teams made 

organizational decisions without outside consultation. In response, state CoP 

leadership brainstormed ways to better include local CoP input, such as new 

circular pipelines of information between the state and local groups.

Learn More

The Office of Performance and Evaluation (OPE) has a webpage 

with more information on the National CoP for Supporting 

Families evaluation, among other projects, and is where more 

comprehensive findings of this year’s evaluation cycle will be 

available.

https://acl.gov/programs/program-evaluations-and-reports

Next Steps

The evaluation team will 

continue to collect and analyze 

additional data during the 

2019-2020 evaluation cycle of 

the National CoP for Supporting 

Families evaluation.