Living Well 2020 

Cross-Site Evaluation

Volume I 

Introduction
Living Well Cross Site Evaluation Volume I: Introduction 2

I. 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.

II. 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 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;

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.

Community 

Monitoring

Community 

Capacity 

Building

Exhibit 1. Core Components 

of Living Well Models
Living Well Cross Site Evaluation Volume I: Introduction 3

• 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

III. Eight Key Features

Grantees incorporate eight key features into their 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

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, selfdetermination, 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 Volume I: Introduction 4

IV. 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.

V. About this Report

This report is comprised of four volumes: (I) Introduction, (II) Grantee Profiles, (III) Cross-Site Analysis and Conclusion, 

and (IV) Methodology. Volume II reports grantee-specific data, including grantee background, state context data, and 

evaluation findings and analysis. Volume III provides cross-site analysis and discussion, comparing and contrasting grantee 

models by core components and key features.

The evaluation reports from grant year 2018-2019 are publicly available on the Administration for Community Living’s 

website.