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Supporting Families Community of Practice Evaluation

Missouri State Data Brief

Evaluation Overview

In 2012, the Administration for Community Living (ACL), through the Administration on 

Disabilities (AoD)1, awarded the five-year National Supporting Families Community of Practice 

(CoP) grant to the National Association of State Directors of Developmental Disabilities Services 

(NASDDDS), which partnered with the University of Missouri-Kansas City Institute on Human 

Development (UMKC-IHD). In the first year of the grant, 15 states applied and five were selected 

to participate, including Connecticut, the District of Columbia, Oklahoma, Tennessee, and

Washington, with Missouri serving as the mentor state. Given growing interest in the work of the

CoP, NASDDDS and UMKC-IHD decided to expand and sustain the CoP outside of the initial 

grant. A second cohort, known as the expansion states, joined in 2016, including Alabama, 

Delaware, Hawaii, Indiana, Kansas, Maryland, Ohio, Oregon, Pennsylvania, and South Dakota. 

With interest continuing to grow around the nation, the CoP welcomed five new states—

Massachusetts, Michigan, Minnesota, Virginia, and New Jersey—in 2019 and created 

opportunities for participating states to adjust their level of participation.

Three project outcomes guide the work of the 

National Supporting Families CoP:

¡ State and national consensus on a national 

framework and agenda for improving supports

for families with children with I/DD

¡ Enhanced 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

To examine progress toward federal project 

outcomes and identify which activities are leading 

to success, ACL funded the National Supporting 

Families CoP evaluation. The evaluation team 

gathered data that align with the three project 

outcomes to determine how the CoP is producing 

outcomes of interest to ACL, which reflect the 

five AoD priority areas (Exhibit 1). Findings will provide ACL with outcomes data and 

recommendations to improve supports to families of individuals with I/DD. They will also provide 

information on how the CoP and CtLC framework improve support and systems delivery of 

services to families and individuals with I/DD.

 

1 The Administration on Intellectual and Developmental Disabilities (AIDD) initiated the evaluation in 2017. The 

Administration on Disabilities (AoD) now oversees the evaluation.

Exhibit 1. AoD Priority Areas

The Five AoD Priority Areas

§ Ensure the continued protection of rights of 

individuals with I/DD and prevent their abuse, 

neglect, and exploitation

§ Improve and maintain effective and responsive 

management of responsibilities under 

Developmental Disabilities Assistance and Bill of 

Rights Act of 2000 (the DD Act)

§ Promote Employment First as a key strategy for 

individuals with I/DD to be contributing and 

productive members of society participating in 

the competitive integrated workforce

§ Empower individuals with I/DD and their families 

to access home and community based (HCBS) 

and supports that are self-directed and ensure 

opportunity for community participation

§ Support advocacy efforts of individuals with I/DD 

in order to ensure their participation in system 

and service delivery design
 2

The evaluation includes all 16 states that participated in the National Supporting Families CoP for 

at least two years between 2012 and 2018. For evaluation purposes, evaluators stratified states into 

three groups based on their stage of development, as described in Exhibit 2.

Exhibit 2. Evaluation Participants

 

Group One Group Two Group Three

The six original CoP states:

§ Connecticut

§ District of Columbia

§ Missouri (mentor state)

§ Oklahoma

§ Tennessee

§ Washington

States with previous exposure to 

the CoP and CtLC framework before 

joining the expansion state cohort:

§ Maryland

§ Ohio

§ Pennsylvania

§ South Dakota

States with little or no exposure to 

the CoP and CtLC framework before 

joining the expansion state cohort:

§ Alabama

§ Delaware

§ Hawaii

§ Indiana

§ Kansas

§ Oregon

Evaluators collected data from states using four tools:

¡ Reporting tools (one for each state grouping) gathered descriptive data about CoP structure, 

activities, and impact.

¡ Telephone interviews (informed by the reporting tools) collected contextual data about CoP 

activities and accomplishments specific to each state.

¡ Site visits (to select states) with CoP leadership and other stakeholders provided data on the

relationship between CoP activities, outputs, and outcomes.

¡ Materials review (on an ad-hoc basis) collected needed data on areas of interest.

Evaluators analyzed the collected data using a conceptual framework developed by Wenger, 

Trayner, and de Laat2

(Exhibit 3), which assesses value creation in communities. Adapted for 

evaluation purposes, the framework considers five different cycles of value creation to capture the 

richness of value created by communities of practice. The following page describes the value 

generated from CoP activities and the CtLC framework within the Missouri CoP.

2 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 Netherlands.

Exhibit 3. Value Cycle Framework
 3

A Look into Missouri’s Community of Practice

Missouri (MO) is one of the six original states to join the National Supporting Families CoP in 

2013. The MO CoP is a collaboration between the Missouri Developmental Disabilities Council 

(MODDC) and the Missouri Division of Developmental Disabilities (DD). The timeline below 

(Exhibit 4) provides detailed information about MO’s participation in the CoP over time.

Exhibit 4. Timeline of Missouri’s CoP Participation

Using data from the most recent Residential Information Systems Project Report developed by the 

University of Minnesota, the number of people with I/DD known to or served by the MO Division 

of DD in 2016 was 34,802. Long-Term Services and Supports (LTSS) recipients include people 

with I/DD who receive Medicaid or State-funded supports and services. In 2016, 58% of 18,704

LTSS recipients in MO lived at home with a family member. The report also shows annual 

Medicaid Waiver expenditures for recipients with I/DD, which amounted to $56,064 per recipient 

in 2016.3

Understanding the current state of I/DD services and supports in MO is important in better 

understanding how CoP activities and the CtLC framework impact families and individuals with 

I/DD. The evaluation team gathered valuable data from MO through administration of the 

reporting tool, telephone interview, and materials review. After careful analysis of the data using 

the value cycle framework, the evaluation team noted the following key achievements by 

Connecticut’s CoP during evaluation year one:

¡ Various state agencies and stateside organizations have incorporated the CtLC framework, 

including Vocational Rehabilitation (VR), Early Childhood, Special Health Care Needs, 

Protection & Advocacy, First Steps, Project STIR, and the Missouri Association of County 

Developmental Disabilities Services. Among them, they work to develop, fund, and 

disseminate CtLC resources.

¡ The MO Division of DD uses the CtLC framework and tools to create strategic plans for 

various projects and initiatives, and to help plan DD Council members’ orientations and 

retreats.

¡ UMKC has uploaded CtLC trainings online for families to access at no cost.

 

3 Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Bourne, M.L. 

(in press, 2018). In-home and residential long-term supports and services for persons with intellectual or developmental 

disabilities: Status and trends through 2016. Minneapolis: University of Minnesota, Research and Training Center on 

Community Living, Institute on Community Integration.
 4

MO’s continued participation in the National Supporting Families CoP shows their commitment to 

the CtLC framework and advancing supports for families of individuals with I/DD. The following 

tables includes a more comprehensive list of MO’s achievements from evaluation year one.

Exhibit 5. Missouri’s Achievements in Evaluation Year One, 2018-2019

Value Cycle CoP Activities and Achievements

Cycle 1: Immediate Value

Value of Activities and 

Interactions Themselves

§ The MO CoP provides peer-to-peer support for families and self-advocates.

§ The Developmental Disabilities (DD) Council works closely with county boards 

and invites them to all CoP meetings and events. Self-advocates also work in 

each regional office.

§ Stakeholder meetings occur four times a year. Attendees include 

representatives from the DDD, Aging, Health & Senior Services, DD Council, 

families, and self-advocates.

Cycle 2: Potential Value

Changes in Knowledge 

Capital

§ In a joint project around Supported-Decision Making, MO uses the CtLC tools in 

stakeholder trainings to articulate alternatives to guardianship.

§ This past year, three cohorts of individuals went through the Ambassador 

Series training.

§ The MO Family to Family (F2F) Stakeholder group comes together to work on 

networking, sharing resources, and referrals to further streamline access to 

services for individuals with I/DD and their families. F2F is also actively 

enhancing front door supports through the Division of DD.

§ Progressive Community Services (PCS) hired family navigators who work with 

self-advocates and family members who are not yet eligible for services to 

create a trajectory, think about possibilities, develop a vision for a good life, 

plan, etc.

Cycle 3: Applied Value

Changes in Practice

§ The Division revised its individualized support plan (ISP) process and Support 

Coordinator Guidelines to align with CtLC. Several county boards adjusted their 

ISP as well.

§ MO created several new staffing positions within its Division, including 

information specialists hired to assist in Medicaid access and eligibility 

determination in regional offices.

§ Important policy changes, such as adjustments to the Guardianship Law, took 

place this past year.

§ Project STIR created a "LifeCourse University" in order to serve as a community 

focal point for working through goals.

Cycle 4: Realized Value

Performance 

Improvement

§ No activities reported during this evaluation period.

Cycle 5: Reframed Value

Redefining Success

§ The State DD agency is changing the way it measures outcomes by aligning 

them with the CtLC framework and life domains.

§ The DD Council reframed its goals and strategies by aligning their five-year plan 

with the CoP and CtLC framework.