Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 1

Living Well 2020 

Cross-Site Evaluation

MISSOURI

Living Well Grantee Profile
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 2

The University of Missouri, Kansas City Institute for Human Development (UMKC-IHD) received the five-year Living 

Well grant in 2018.

I. Grant Background

A. Grant Context and Purpose

Between 1998 and 2016, the number of people with intellectual and developmental disabilities (I/DD) living in facility 

settings decreased 39 percent, while the number of people in small group settings of four to six people increased 80 

percent. During the same period, the number of people with I/DD living in their own home increased 126 percent, and 

the number of people living in a host or foster home increased by 132 percent.1

 People with I/DD who live in home and 

community-based service (HCBS) settings are more likely than people with I/DD living in institutional settings to make 

their own choices, have friends who are not paid staff, and have a paid job in the community.2

 Despite these positive 

outcomes, variations in access to and quality of HCBS across the country can put the well-being of people with I/DD living 

in their communities at risk. A recent series of Office of Inspector General (OIG) reports identified significant gaps in the 

reporting of and response to critical incidents in group homes.3

To address these pressing needs, the Administration for Community Living (ACL)4

 issued Living Well-Model Approaches 

for Enhancing the Quality, Effectiveness and Monitoring of HCBS for Individuals with I/DD (Living Well) grants, with two 

key goals:

• Increase community integration and independence of individuals with I/DD; and 

• Improve the quality of HCBS.

ACL awarded eight five-year grants across two cohorts to identify, develop, and evaluate model approaches which address 

two interrelated core components by incorporating eight key features. ACL administers Living Well grants through the 

Projects of National Significance (PNS) program. Funded under Subtitle E in the Developmental Disabilities Assistance 

and Bill of Rights Act (DD Act), PNS create and enhance opportunities for people with developmental disabilities (DD) to 

contribute fully in all aspects of community life. Further, PNS support the development of national and state policies that 

promote independence, integration, and inclusion in community life.

In 2020, the COVID-19 pandemic exacerbated many of the challenges faced by individuals with I/DD living in HCBS 

settings and the systems that support them, including concerns about health and safety, abuse and neglect, and social 

isolation. While the COVID-19 pandemic was not anticipated when ACL awarded Living Well grants, the public health 

crisis magnified gaps in effective systems of community monitoring for individuals with I/DD and provided opportunities 

for grantees to rapidly respond to local and state needs.

B. Two Core Components

Grantees address two core components with their Living Well model(s). 

• Community Monitoring: Development and implementation of a coordinated system utilizing multiple community 

and state level partners for monitoring the safety, health, and well-being of individuals with intellectual and 

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

2 Human Services Research Institute (HSRI) and National Association of State Directors of Developmental Disabilities Services (NASDDDS). (2019). 

National Core Indicators In-Person Survey: 2017-2018 Final Report.

3 Office of Inspector General, Department of Health and Human Services. (2016). Massachusetts did not comply with federal and state requirements 

for critical incidents involving developmentally disabled Medicaid beneficiaries.

4 The Administration on Intellectual and Developmental Disabilities (AIDD) oversaw the Living Well grants when they were awarded in 2017 and 

2018. The Administration on Disabilities (AoD) now provides oversight to the grants within ACL.
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 3

developmental disabilities living in a variety of community settings. 

The purpose is to identify and eliminate the risk factors for 

tracking, redressing and preventing abuse, neglect and exploitation 

in community settings;

• Community Capacity Building: Application of evidence 

based practices and innovative strategies focusing on 

improving services that support people with developmental 

disabilities living in the community or those moving to the 

community from a more restrictive setting; access to and quality 

of community services through capacity building and scaling 

of evidence based and other promising practices; reducing and 

mitigating the incidence of and risk factors for abuse and neglect; and supporting empowerment, self-determination, 

self-advocacy, and an individual’s independence, autonomy and right to live alongside their non-disabled neighbors.5

Community 

Monitoring

Community 

Capacity 

Building

Exhibit 1. Core Components 

of Living Well Models

5 Living Well-Model Approaches for Enhancing the Quality, Effectiveness and Monitoring of Home and Community Based Services for Individuals 

with Developmental Disabilities; HHS-2017-ACL-AOD-DNIQ-0221. https://acl.gov/grants/living-well-model-approaches-enhancing-qualityeffectiveness-and-monitoring-home-and-1

C. Eight Key Features

Grantees incorporate eight key features into their Living Well models.

Exhibit 2. Eight Key Features of Living Well Models 

Partnerships

Initiation and coordination 

of partnerships or coalitions 

with local and state-level 

organizations, agencies, and 

other relevant stakeholders, 

including at least one-self 

advocacy organization, in 

the design, implementation, 

and replication of grantee 

activities

Meaningful and 

active engagement 

with self-advocates 

and families

Continuous, meaningful, 

and active engagement of 

self-advocates and family 

members throughout the 

life cycle and in all stages of 

the project

Evidence based 

practices for service 

improvements

Use of evidence based and 

innovative strategies to (1) 

improve access to and quality 

of community services, 

(2) reduce and mitigate 

abuse and neglect, and (3) 

support empowerment, 

self-determination, and selfadvocacy

Building capacity 

of DSPs and HCBS 

providers

Prevention-based tools 

and technical assistance 

to address common 

needs, such as changing 

the ‘culture of abuse and 

neglect’ in HCBS settings 

and transferring knowledge 

of positive behavior

Reducing abuse 

and neglect through 

community monitoring

Collection, analysis, and 

dissemination of data to 

develop and implement 

coordinated community 

monitoring that builds 

on existing local or 

state infrastructure and 

partnerships

Addressing health 

and safety with data 

tools

Data tools and evidence 

based practices for 

monitoring high-risk 

individuals and addressing 

reoccurring issues of health 

and safety concerns

Program and 

outcome evaluation

Process and outcome 

evaluation to analyze 

delivery and impact of 

project activities

Sustainability

Assurance of organizational, 

financial, and/or community 

stability to continue and 

refine grantee work
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 4

D. Grantees and Partnerships

ACL awarded grants in two cohorts, with the first cohort of three grantees beginning in September 2017. The second 

cohort of five grantees began their five-year grants in September 2018. 

Exhibit 3. Living Well State Grantees by Cohort

Cohort 1

University of Georgia 

Institute on Human 

Development

University of New 

Hampshire Institute on 

Disability

Virginia Commonwealth 

University Partnership for 

People with Disabilities

Cohort 2

Alaska Governor’s Council 

on Disabilities and Special 

Education

University of Idaho Center 

on Disabilities and 

Human Development

Indiana Family 

and Social Services 

Administration

University of 

Missouri-Kansas City 

Institute for Human 

Development

Wisconsin Board for 

People with 

Developmental Disabilities

The grant requires partnerships among, at minimum:

• One Protection and Advocacy System, State Developmental Disabilities Council, or University Center for 

Excellence in Developmental Disabilities; and, 

• At least one state agency (state I/DD agency, state Medicaid agency, self-advocacy organization, consumercontrolled organizations, or family-led organizations). Additional partnerships are strongly encouraged.

II. Grantee Information

The UMKC-IHD is a University Center for Excellence in Developmental Disabilities Education, Research, and Service 

established in 1977 that works to promote self-determination among people with disabilities. The organization has an 

Advisory Leadership Team, comprised of adults with disabilities, family members, and leaders from the Missouri Division 

of Developmental Disabilities, Missouri Developmental Disabilities (DD) Council, Missouri Protection and Advocacy, 

Missouri Assistive Technology, Senate Bill 40 Boards, and other stakeholders that provides feedback on priorities and 

activities and participates in education efforts and coalition building.

The UMKC-IHD focuses on research and evaluation, program development, and training and technical assistance; they 

participate in and lead projects to promote the inclusion and well-being of individuals with disabilities in Missouri. These 

include the iPad and iPhone Application for Prevention of Sexual Abuse, which involves the development of an app for 

people with disabilities to use for trainings and education; the People First of Missouri Technical Assistance project, an 

initiative to assist members of the state’s People First coalition through ad hoc technical assistance; and the Kansas City 

Hispanic Needs Assessment, a project developed to assess current conditions, assets, and needs of the Latinx population 

in the Greater Kansas City area. The UMKC-IHD also houses the LifeCourse Nexus, a community of learning that brings 

people together to work towards transformational change within organizations, systems, and communities to support 
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 5

“good lives for all people.” The LifeCourse Nexus both utilizes and continually refines the Charting the LifeCourse (CtLC) 

framework and tools to create a common language and philosophy for shaping and supporting innovation in policy, 

practice, procedure, and culture.

III. Grantee Partnerships

The UMKC-IHD partners with key stakeholders on their Living Well grant (collectively, the Missouri Living Well 

team) including, but not limited to, Missouri Department of Mental Health Division of Developmental Disabilities (the 

Division), People First Missouri, the Missouri DD Council, Missouri Protection & Advocacy, the Missouri Association of 

County DD Services, the Marf (the Provider Association), and the Missouri Family-to-Family Resource Center. National 

partners include the Human Services Research Institute and the National Association of State Directors of Developmental 

Disabilities Services.

IV. State Context

Variations in access to quality home and community-based services (HCBS) occur, in part, due to varying demographic, 

economic, political, and historical factors in each state. Key contextual factors are described here to better understand 

UMKC-IHD’s external conditions for their Living Well model. The COVID-19 pandemic rapidly evolved during the 

2019-2020 evaluation cycle with significant impact on the delivery of HCBS and the health and safety of individuals with 

intellectual and developmental disabilities (I/DD). The pandemic response influenced both how and the extent to which 

grantees implemented grant activities as planned and the local and state context in which the grant is being implemented. 

The UMKC-IHD continues to frequently convene stakeholders in Missouri, resulting in a strong collaboration across 

partners. The organization is engaged in disability-focused conversations and initiatives across the state. For example, 

UMKC-IHD conducts National Core Indicators (NCI) data collection. As a result, there is a longstanding partnership 

and consistent communications that facilitates awareness about what may be beneficial in the state, how to identify needs 

through Living Well grant work, and how to best align grant goals with other state initiatives. Additionally, the DD Council 

partnered with the Missouri Living Well team as part of their needs assessment for their next five-year plan. 

The Division partners with UMKC-IHD through an annual contract, designed to support the division in its implementation 

of system wide enhancements to better support people with I/DD throughout the state. One result of this partnership 

are various capacity building curricula for multiple target audiences (including self-advocates, support coordinators, 

and community health workers). The Division also plans to implement the Health Risk Screening Tool, a web-based tool 

designed to screen for health risks among vulnerable populations, particularly people with disabilities. The Missouri Living 
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Well team, in collaboration with the Division’s leaders team is assessing what role the Living Well grant may play in the roll 

out and scaling of the identified and planned community monitoring and capacity building enhancement strategies of the 

Division. This may include using Living Well pilot sites, conducting evaluations, assisting with phased implementation, and 

making Missouri-specific modifications to the identified tools.

V. Model and Objectives

The Missouri Living Well team is leading a diverse group of stakeholders to measure performance, develop a data 

visualization system, and build capacity through implementation of new tools and trainings. The team developed a levels 

of impact framework to organize their efforts and ensure that they are addressing the goals of their Living Well model at 

all levels of the DD system. The levels include self-advocate networks, family networks, support coordination entities, DD 

service provider organizations, the DD system, and cross-system organizations. The Missouri Living Well team is building 

on previous technical assistance experience and the CtLC framework, of which they were a lead developer. Their grant 

model contains both statewide activities and local engagement through county collaborative teams. These teams represent 

six of the state’s 114 counties in the initial development phase, with plans to expand the county collaboratives to additional 

counties in future grant years.

The Missouri Living Well team’s model objectives are:

1. To engage diverse partners in the design, implementation, and replication of the model;

2. Develop and implement a coordinated system for monitoring safety, health, and well-being of individuals with DD 

living in a variety of community settings; and,

3. To design, identify, and implement a range of evidence based practices and innovative strategies including training 

for direct service professionals and HCBS providers, designed to improve services in the community.
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 7

VI. Key Activities by Core Components

A. Community Monitoring

Community Monitoring includes efforts to develop a comprehensive system to monitor the health and well-being of 

individuals with I/DD living in a variety of home and community-based settings. The following are key activities reported 

by the Missouri Living Well team during this evaluation period to address this core component: 

Key Activity: Develop Virtual Data 

• The Missouri Living Well team partnered with Human Services Research Institute to build a data dashboard to 

improve the accessibility and usefulness of data. The team engaged in a mapping exercise to identify data currently 

available to the team and data collected by project stakeholders. Through the CtLC Ambassador Series for Systems 

Transformation, county collaborative members recommended quality of life indicators for the dashboard and 

identified strengths and areas of improvement related to data collection and availability. This exercise identified 

data that are currently available and gaps that exist. The dashboard, which is still under development, currently 

includes NCI, Centers for Disease Control and Prevention, and census data. The dashboard will provide background 

information and case studies before displaying the actual data to provide context for users. The team is still collecting 

feedback on the dashboard an identifying additional data sources, such as critical incident data from the division.

B. Community Capacity Building

Community Capacity Building includes efforts to increase the skills and knowledge of all individuals, families, and service 

providers in the HCBS system. The following are key activities reported by the Missouri Living Well team during this 

evaluation period to address this core component: 

Key Activity: Conduct CtLC 

Ambassador Series for System 

Transformation with County 

Collaborative Groups 

• The Missouri Living Well team engaged and coached approximately 90 participants across six counties included in the 

pilot, including representatives from various levels of the DD system in each county, such as people who use services, 

providers, and county boards. Participants are using the CtLC Ambassador Series for Systems Transformation to 

discuss and identify their strengths and areas for growth in their role, their organization, and their community.

• County collaborative teams will develop and implement a strategic action plan to enhance capacity building or 

community monitoring in their local county, based on priorities identified throughout the series. 

• The county collaborative teams piloted the Missouri Living Well team’s new toolkit for system transformation. The 

toolkit is based on the CtLC framework and includes brainstorming and strategic planning resources. As the first pilot 

cohort wrapped up the series, the team evaluated the toolkit and process to identify areas for improvement. The team 

will make any changes to the series and is recruiting a new group of county collaborative teams to begin a second pilot 

group.

Key Activity: Establish Innovation Collaboratives

• The Missouri Living Well team established five innovation collaboratives to address specific topics of interest, such 

as data informed decision-making and person-centered support coordination. Each workgroup is currently led by 

members of the Missouri Living Well team and open to members of county collaborative groups from the first pilot 

cohort. Early workgroup members will form a steering committee for each workgroup and the Missouri Living Well 

team will expand the workgroups to the next cohort of county collaborative members once they complete training and 

coaching in CtLC (i.e., the Ambassador Series for Systems Transformation). The workgroups were launched in April 
Living Well Cross Site Evaluation Missouri Living Well Grantee Profile 8

2020 and are in the early stage of development.

• The Missouri Living Well team is developing evaluation plans for each of the innovation workgroups. The evaluation 

plans will evaluate the goals, objectives, and activities of each workgroup in relation to the overall project outcomes.

Additional Activities:

• Conduct Training Using CtLC in Your Own Life Curriculum: The Missouri Living Well team is conducting trainings 

for self-advocates through their ‘Using CtLC in Your Own Life’ to build self-advocate capacity.

• Conduct CtLC Family Leadership Ambassador Series: The Missouri Living Well team is also conducting capacity 

building training for family members of individuals with I/DD.

• Partner with Station MD: The Missouri Living Well team worked with the Division to bring Station MD to all 

recipients of the Division’s Medicaid HCBS waivers. Station MD provides 24/7 access to an on-call emergency room 

physician who specializes in treating individuals with I/DD. The implementation of Station MD was accelerated by 

the COVID-19 pandemic. In HCBS settings, DSPs can consult with a physician prior to visiting the hospital, which 

reduces unnecessary emergency room visits. If medical care is required, Station MD physicians can consult with 

the individual’s providers to ensure quality care. Missouri Family-to-Family has supported the effort by using their 

platform to share information and tips about using Station MD.

VII. Analysis and Conclusion

A. Contextual Factors

The Missouri Living Well team is leveraging their levels of impact model and the CtLC framework to implement grant 

activities. The team is both strengthening existing partnerships and creating new partnerships to support their work. The 

Missouri Living Well team reports that their relationship with the Division is a significant advantage and is allowing them 

to integrate grant goals with the Division’s strategic initiatives and the DD Councils next five-year state plan. 

B. Model Design

Missouri’s Living Well model addresses grant objectives both locally and statewide. The levels of impact framework helps 

the Missouri Living Well team ensure that all levels of the DD system are targeted for improvement. The development, 

pilot, and evaluation of the new CtLC Ambassador Series for Systems Transformation is both driving positive changes in 

the communities participating in the pilot process and developing tools for future use. 

C. Key Activities

The Missouri Living Well team is developing new tools, implementing existing tools, and developing new and fostering 

existing partnerships through their Living Well grant. The Missouri Living Well team’s multifaceted approach will lead to 

new tools and outputs that are sustainable beyond the grant funding period. Changes being identified and implemented 

at the county level will spur systems change in the coming years and the data dashboard will inform future decisions. The 

Missouri Living Well team intends to continue developing and implementing these tools, making modifications based on 

their internal evaluations and engaging new county collaborative teams in the final years of the grant. These finalized tools 

will then be ready for sustained use by other stakeholders in Missouri, as well as across the country.