LIVING WELL CROSS-SITE EVALUATION 2020-2021 1

Strategies for Using Data Tools for 

Monitoring and Decision-Making

Living Well Grant Background

Variations in access to and quality of home and community-based services 

(HCBS) across the country can put the wellbeing of people with intellectual and 

developmental disabilities (I/DD) living in their communities at risk. To address 

these pressing needs, the Administration for Community Living (ACL) 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 administers Living Well grants through the Projects of National Significance 

program. ACL awarded eight five-year grants across two cohorts in 2017 and 2018 

to identify, develop, and evaluate model approaches that address the two goals. Grantees 

are located in the following states: Alaska, Georgia, Idaho, Indiana, Missouri, New Hampshire, 

Virginia, and Wisconsin. ACL contracted with the Lewin Group, as a sub-contractor to New 

Editions Consulting, to conduct a cross-site evaluation of the eight grants.1

Each Living Well grantee is developing and implementing data tools and evidencebased practices to monitor and address the health and safety of individuals with developmental 

disabilities at increased risk.2 This brief focuses on how grantees are utilizing data tools to address 

community monitoring challenges and make data-driven decisions. Throughout this brief, the recipients of Living Well grants and their respective project teams are referred to as “grantees.”

This brief focuses 

on how grantees are 

utilizing data tools to 

address community 

monitoring challenges 

and make datadriven decisions.

Background: The Need for Data Tools

State systems of community monitoring are complex and typically require coordination across 

multiple state agencies. Within a state, there are often multiple reporting channels, each with its 

own processes and requirements (e.g., type of incident, age of individual involved, mandated 

reporters). States typically require significant documentation of incident reporting and response, 

but may face challenges analyzing, interpreting, and acting on the data.3 Addressing these 

challenges requires states to integrate data from multiple sources, reduce burden on individuals 

and providers, and analyze data to identify trends and take action.

1 For mor e detailed information on the Living Well grant, grantees, and full evaluation findings, evaluation reports can be found here: 

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

2 Living W ell-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-approachesenhancing-quality-effectiveness-and-monitoring-home-and-1

3 Bour ne, M.L., Sowers, M., & Vegas, L. (2017). Health and Welfare Review: Report and Self-Assessment. National Association of State 

Directors of Developmental Disabilities Services.
LIVING WELL CROSS-SITE EVALUATION 2020-2021 2

Data Tools 

Grantees are using data tools, both nationally available and custom built, to address challenges 

associated with aggregating and utilizing data to their full potential. This brief describes the data 

tools, provides an example of how each tool is being utilized in Living Well grant initiatives, and 

discusses the intended impact of each tool.

Therap

Tool Overview

Therap is a secure, Health Insurance Portability and Accountability Act (HIPAA)-compliant, 

and comprehensive electronic monitoring system for HCBS providers. It allows for consistent 

and standardized documentation of incident reporting, medication management, goals, and 

outcomes. Data can then be aggregated at the individual, program, provider, and project level 

through the use of Therap’s Business Intelligence platform to assess the impact of project 

activities on individuals’ outcomes.

Example: Georgia

The Georgia Living Well team is using Therap with the five provider agencies 

participating in their pilot. The Georgia Living Well team uses two dashboards 

available in the Therap Business Intelligence platform that aggregate data 

entered by providers. The Data Driven Outcomes dashboard allows for largescale data aggregation and assessment of outcomes across two measurement 

types (Important To and Important For) and five domains: Safety, Health and 

Wellbeing, Social Connectedness and Relationships, Meaningful Activities, 

Person-Centered Planning, and Choice. The General Event Reporting 

dashboard, where incident reports and adverse incidents data are collected, 

allows for summary and longitudinal analyses of adverse incidents at all levels 

of organizations. The dashboard also has the capacity to input existing state 

level data to support comparative analyses. Providers enter day-to-day service 

data that are distributed to the internal quality assurance team. Raw data can 

be filtered and analyzed to look at incidents by program, the types of incidents 

occurring, and the number of incidents per individual. 

Intended Outcomes

The Georgia Living Well team expects to use these data to make decisions about allocating 

resources and identifying individuals who are at risk of abuse, neglect, or other adverse 

outcomes. The Georgia Living Well team anticipates improved outcomes including increased 

achievement of personal goals by people with I/DD who are receiving supports. The Therap 

reporting tool and dashboards allow staff to see progress in the system (e.g., decreased critical 

incidents) and quickly assess performance against established benchmarks and domains based 

on individualized service data. The performance metrics allow the Georgia Living Well team and 

provider agencies to better target interventions to improve the quality of services provided.
LIVING WELL CROSS-SITE EVALUATION 2020-2021 3

Health Risk Screening (HRS) Platform

Tool Overview

The Health Risk Screening Tool (HRST) is a validated web-based screening tool for individuals 

with disabilities. The HRST assigns scores to 22 health and behavioral rated items to detect 

health risks and destabilization early. Health care information is entered into the HRST monthly 

and whenever a significant event occurs. When the screening is complete, the HRST provides an 

overall Health Care Level (HCL) showing an individual’s risk intensity and considerations for action 

to address risks.4

Example: New Hampshire

The New Hampshire Living Well team partnered with IntellectAbility Inc, 

formerly Health Risk Screening, Inc., to use the HRS Platform to improve the 

community monitoring system in New Hampshire and move from paper-based 

to electronic data collection and documentation methods. The HRS Platform 

is used statewide to integrate person-centered planning documentation and 

to host the Health Risk Screening Tool (HRST), New Hampshire Service 

Agreement, Supports Intensity Scale, Planning Process Acknowledgement 

Form, Service Agreement Amendment Form, and the Quarterly Satisfaction 

Surveys. The HRST diagnoses are auto-populated into the service agreement 

to avoid duplication of effort for service coordinators and to eliminate errors.

The platform will track critical events and mortality reports in addition to hosting 

health care information, service agreements, and satisfaction survey results. 

The team is meeting with various stakeholders to assess and improve the 

quality of the data being entered into the system and ensure that the state 

can easily pull reports to support Medicaid HCBS waiver requirements and 

renewals.

Intended Outcomes

The New Hampshire Living Well team is aiming to use the HRS platform to track both sentinel 

events (i.e., critical incidents), as well as data to calculate performance measures for Centers for 

Medicare & Medicaid Services (CMS) reporting. This will allow the state to track and analyze data 

in real time and identify immediate action steps when a problem is identified. The development 

and use of this tool is supporting improved community monitoring for abuse, neglect, exploitation 

in New Hampshire, one of the Living Well team’s project goals.

4 Health Risk Screening Tool. IntellectAbility. (2021). Retrieved September 13, 2021, from https://replacingrisk.com/health-risk-screeningtool/.
LIVING WELL CROSS-SITE EVALUATION 2020-2021 4

Custom Tools

Tool Overview

In some cases, grantees are developing their own data tools to analyze data in new ways 

to support community monitoring and decision-making in their states. While commercially 

available tools are easily available, grantees can design custom tools to collect and aggregate 

data from multiple sources and display it in a way that best meets their needs.

Example: Missouri

The Missouri Living Well team partnered with the Human Services Research 

Institute to build a data dashboard to improve the accessibility and usefulness 

of the state and national data. The team engaged in a mapping exercise to 

identify data currently available to the team and data collected by project 

stakeholders. Through the Charting the LifeCourse (CtLC) Ambassador 

Series (a structured introduction to CtLC principles and tools) for Systems 

Transformation, members of county-based pilot sites 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 as well as gaps in available data. The 

dashboard, which is still under development, currently includes National Core 

Indicators, Centers for Disease Control and Prevention, and Census Bureau 

data. The dashboard will provide background information and case studies 

before displaying the actual data to provide context for users. The team is 

collecting feedback on the dashboard and identifying additional data sources, 

such as critical incident data from the state.

Intended Outcomes

The Missouri Living Well team is aiming to use their custom data dashboard to present a wide 

range of data to help stakeholders better understand the real-world meaning of a specific data 

point and use it to support decision making. Goals include being able to evaluate quality of life 

across individuals with and without I/DD to better benchmark quality standards. The team hopes 

that this information will drive improved outcomes across HCBS and I/DD supports in Missouri.

Conclusion

Living Well grantees are using a variety of data tools to support progress toward their goals and 

improved individual outcomes by:

• Increase providers’ ability to collect and analyze data to identify areas for growth through 

Therap and the Business Intelligence dashboards;
LIVING WELL CROSS-SITE EVALUATION 2020-2021 5

• Improve community monitoring and drive service improvements by tracking and analyzing 

data in a centralized system such as the HRS platform;

• Support the use of data from multiple sources to inform decisions and better understand 

quality.

This use of data tools in Living Well grants is supporting decisions that will lead to higher quality 

supports and HCBS for individuals with I/DD. This in turn will lead to improved outcomes 

including more individuals achieving their goals and leading to a higher quality of life.