Living Well Cross Site Evaluation Indiana Living Well Grantee Profile 1

Living Well 2020 

Cross-Site Evaluation

INDIANA

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

The Indiana Family and Social Services Administration Division of Disability and Rehabilitative Services (DDRS) 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 Indiana 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 Indiana 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 Indiana Family and Social Services Administration was established by the Indiana General Assembly in 1991 and is a 

health care and social services state agency with six care divisions. Within the Family and Social Services Administration, 

DDRS manages the delivery of services to children and adults with developmental disabilities (DD). 

Within DDRS, the Bureau of Quality Improvement Services monitors the quality of HCBS waiver services for individuals 

with DD and the organizations and providers who are approved to provide those services. They oversee the approval and 

enrollment of new providers, provider recertification, case record reviews, incident management, community monitoring 

and complaints. In addition, the Bureau of Quality Improvement Services assists in the distribution of multiple resources, 

quality-related trainings, and technical assistance. Further, the Bureau of Developmental Disabilities Services provides 

services for individuals with DD that enable them to live as independently as possible in their communities. As part of 

these efforts, the Bureau of Developmental Disabilities Services assists individuals in receiving community supports and 

residential services using a person-centered plan to help determine which services are needed and who can best provide 

them.
Living Well Cross Site Evaluation Indiana Living Well Grantee Profile 5

III. Grantee Partnerships

The DDRS partners with key stakeholders on their Living Well grant (collectively, the Indiana Living Well team) 

including, but not limited to including self-advocates, families, providers, the National Association of State Directors of 

Developmental Disabilities Services (NASDDDS) Culture of Quality, and Charting the LifeCourse (CtLC) Nexus Chapter 

through the University of Missouri Kansas City.

IV. State Context

Variations in access to quality home and community-based settings (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 

DDRS’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.

Indiana DDRS oversees the Partners in Transformation stakeholder group, which maintains a common vision and set of 

goals to align systems change efforts; this includes engaging local and statewide stakeholders, defining quality metrics and 

service outcomes, providing education to system partners to help people achieve a “good life,” and supporting providers 

and case managers. Collectively, these activities work towards a system that supports the individual as the primary driver of 

their own life and the system as a whole using CtLC as an organizing framework. Systems change efforts in Indiana include 

the redesign of HCBS waivers administered by the Bureau of Developmental Disabilities Services and ongoing participation 

in the Supporting Families and Cultural Competency communities of practice. As a whole, DDRS is integrating their Living 

Well grant activities into broader systems change efforts. 

Indiana DDRS is the only state agency among the eight Living Well grantees. As a state agency, building trust can be 

difficult. The team is working to build a grassroots movement, but is sometimes constrained by DDRS’ competing priorities, 

such as their response to the COVID-19 pandemic. At the same time, DDRS’ role as a state agency can facilitate grant 

activities, such as alignment with other systems change initiatives.
Living Well Cross Site Evaluation Indiana Living Well Grantee Profile 6

V. Model and Objectives

The Indiana Living Well grant model focuses on using the CtLC organizing principles and framework. The Indiana 

Living Well team began by working to include self-advocates, families, direct support professionals (DSPs), and other 

key stakeholders. In concert with these stakeholders, the Indiana Living Well team is working to develop, and eventually 

implement, a new integrated proactive community monitoring system by examining the current system through the lens of 

the CtLC framework. The Indiana Living Well team and stakeholders are developing and disseminating toolkits using CtLC 

principles to support HCBS.

The Indiana Living Well team’s model objectives are:

1. Collaborate with and empower self-advocates, families, and key stakeholders throughout this project, ensuring full 

involvement in the development of practices, policies, and procedures to elevate HCBS;

2. Develop and implement an improved process for analyzing data from HCBS providers to influence practices, 

policies, and procedures for increasing quality of and access to services that improve positive outcomes for 

individuals with I/DD;

3. Develop and test toolkits for providers, individuals, and their families to improve monitoring of safety, health, and 

well-being of individuals with I/DD as well as reduce risk factors for abuse, neglect, and exploitation; and

4. Identify, develop, and implement an innovative approach to build the capacity of community supports for 

individuals with I/DD, bolstering paid and non-paid community services and supports.
Living Well Cross Site Evaluation Indiana 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 Indiana Living Well team during this evaluation period to address this core component: 

Key Activity: Explore Data Collection Strategies and Systems

• The Indiana Living Well team continued addressing the challenge of community monitoring and reporting occurring 

in silos by examining what data are being collected and exploring potential data collection systems. The Indiana State 

Department of Health Division of Long Term Care, which oversees licensing and certification for long term care 

facilities, has a robust data collection system. The Indiana Living Well team will meet with representatives from the 

Division of Long Term Care to discuss strategies for data collection and integration. 

Key Activity: Identify Quality Indicators and Conduct Surveys

• The Indiana Living Well team conducted an extensive review of literature, review of state policies, and interviews to 

identify quality indicators to inform a shift in culture and performance for DDRS and develop innovative strategies 

that impact Indiana’s systems change efforts. The Indiana Living Well team aligned strategies with the CtLC 

framework. Through this process, the team recognized a need to disseminate a survey to case managers, providers, 

and DSPs. The survey, developed in partnership with Indiana University, is for case managers, DSPs, and management 

of provider organizations. The goal of the survey is to gauge the priorities of respondents based on the direction they 

believe that the state agency has set.

• The Indiana Living Well team also began development of a survey to gather baseline data focused on expectations that 

individuals receiving supports and their families, providers, and other key stakeholders have for the state. The survey 

aims to capture what the perceived priorities of the state are compared to what the key stakeholders believe priorities 

should be.

Key Activity: Revise Needs Assessment and Evaluation Plan

• The Indiana Living Well team continued to revise the ongoing needs assessment and evaluation plan based on the 

project’s activities and focus. Part of these efforts included analysis of Indiana’s National Core Indicators (NCI) from 

2015-2018. Staff shared results from the analysis at the NCI Annual Meeting.

• The Indiana Living Well team discussed efforts to link NCI data, portal data, and Medicaid reimbursement data to 

gain a stronger understanding of what data gaps exist. The team also began discussions on what questions to add to 

the NCI survey to support understanding of three CtLC domains and waiver redesign. In order to avoid redundancy, 

Indiana Living Well team members planned to review three existing data sources first.

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 Indiana Living Well team during this 

evaluation to address this core component: 

Key Activity: Align Efforts Across Systems

• The Indiana Living Well team engaged key stakeholders in the state with partners in NASDDDS Culture of Quality 
Living Well Cross Site Evaluation Indiana Living Well Grantee Profile 8

and the CtLC Nexus through University of Missouri-Kansas City to inform a collective impact approach to align state 

initiatives with broader systems change efforts. For example, the Indiana Living Well team initiated efforts to align 

their work in the Community of Practice for Cultural and Linguistic Competency in Developmental Disabilities with 

the CtLC framework and the Living Well grant work to ensure adequate consideration of people’s backgrounds and 

cultures. The team shared this goal with stakeholders at a meeting in January 2020. Additionally, the Indiana Living 

Well team used Culture of Quality resources to develop a weekly residential provider check-in process via phone call, 

in response to COVID-19. This process enabled the Indiana Living Well team to support providers with key challenges 

in a timely, collaborative manner. Based on the results and feedback from this process, the team is exploring how to 

leverage this approach into its broader community monitoring approach. As a result, staff recorded detailed steps of 

the process and progress, including how they trained staff and analyzed data, to inform future Living Well and other 

related efforts.

Key Activity: Conduct a Series of Trainings and 

Events for Self-Advocates, Families, and Providers

• The Indiana Living Well team worked to ensure self-advocates and families have equal footing with other 

stakeholders. The CtLC Ambassador Series included self-advocates, and the team reserved several other Ambassador 

Series’ targeted at different stakeholder groups (e.g., self-advocates, families, providers, and case managers) to build 

leadership and encourage participation.

• A subset of the larger grant team was developed to serve as the leadership group. The group includes self-advocates, 

families, providers, and other system stakeholders, including the Governor’s Council and Protection & Advocacy 

representatives, who are also self-advocates. The leadership group participated in a policy-focused Ambassador Series 

to support team development and improve information-sharing.

• The Indiana Living Well team began development of a series of provider trainings on the CtLC framework, as well as 

partnerships to provide on-the-ground support to self-advocates. The provider trainings aim to ensure that providers 

can facilitate self-advocate leadership opportunities in the future.

VII. Analysis and Conclusion

A. Contextual Factors

The Indiana Living Well team is uniquely positioned within a state agency, and leverages this role by capitalizing on 

existing partnerships, access to key stakeholders, and rapport built across systems since the agency’s inception. As a 

result, the Indiana Living Well team works closely with leadership across partner agencies to integrate Living Well goals, 

philosophies, and activities for short- and long-term support. While there is some apprehension among individuals about 

DDRS’ ability to impact true systems change as an agency tied to fluctuating priorities, such as COVID-19, the Indiana 

Living Well team built strong partnerships with other agencies early on, allowing the team to disseminate Living Well 

project information widely and generate enthusiasm around the project across systems. The Indiana Living Well team also 

has a unique opportunity to engage with other related grants in which DDRS is involved, such as an advocacy grant with 

the Arc of Indiana, and braid Living Well goals to those existing opportunities.

B. Model Design

The Indiana Living Well team utilizes a variety of strategies to build on existing structures in the state while updating or 

creating new tools to promote Living Well activities. Notably, the state focuses on how to embed the CtLC framework in a 

range of initiatives, which supports alignment across their work. Through integration of the framework, the Indiana Living 

Well team strengthened stakeholder engagement and improved person-centered thinking among agency leadership. In 

tandem, key partnerships, such as with NASDDDS, support transformational change in the way HCBS are implemented 

in the state. Indiana’s Living Well objectives include areas of focus across a wide range of stakeholders, from self-advocates 

and families to policymakers, in order to affect change on a systems-level and offer effective, scalable, and sustainable 

products that will continue even after the grant ends.
Living Well Cross Site Evaluation Indiana Living Well Grantee Profile 9

C. Key Activities

The Indiana Living Well team works to create opportunities for self-advocates and family members to serve in leadership 

roles and trains providers to create similar opportunities, which also serves as a strategy to uphold Living Well philosophies 

once the grant ends. In order to sustain and scale data collection and evaluation tools, the Indiana Living Well team 

developed metrics to assess progress. These include creating surveys and working with quality managers to review data 

collection methods and use, update provider reviews and examine provider-level outcomes, and build provider capacity 

based on incident reporting. All of these activities provide critical information on gaps that may exist and other areas 

of need to better inform and drive the conversation on the trajectory of the Living Well project, including as it relates to 

sustainability. Overall, the Indiana Living Well team capitalizes on existing systems change momentum to integrate Living 

Well goals and achieve desired outcomes through hands-on activities with self-advocates, families, community members, 

providers, care coordinators, and other state agencies.