Cutler Institute for Health and Social Policy

Disability and Aging Products: Community Living

Profiles of Older Adults and People with Disabilities

This Chartbook is a rich reference document for those interested in the aging of the population in Maine It includes historical and projected population trends by county and variations in poverty rates, disability, and caregiver availability throughout the state.  Recent patterns of nursing home use, residential care use and use of home and community based services is also highlighted. Common diagnoses and other characteristics of Maine long term care service users are noted. MaineCare cost and quality data for long term service users are also provided. 

See also: Chartbook: Older Adults and Adults with Physical Disabilities: Population and Service Use Trends in Maine (2010 Edition)

This Chartbook is the original edition of this report and provides historical and projected information on population and service use trends for older adults in Maine. 

Profile of the "Homelike" Characteristics of Residential Care Facilities in Maine

Prepared in collaboration with the Maine Department of Health and Human Services as part of the State Profile Tool Project, the Muskie School prepared a Chartbook of  the results of a survey of Maine residential care facilities that serve older adults and adults with disabilities, adults with developmental disabilities, adults with mental illness and adults with brain injury. The purpose of the survey was to measure the “homelike” characteristics of residential settings in Maine. Survey questions were developed to measure facility attributes related to autonomy, privacy, and facility “look and feel”.  Results examine the differences in size, bedroom and bathroom set-ups, amenities, control over environment, movement and meals, and other facility characteristics across populations. The report provides a framework for better understanding and defining services that are provided in the most integrated care settings.

For more information, contact Eileen Griffin, 

Survey and Interviews with People Who Use Long Term Services and Support

Personal Experiences with MaineCare
Prepared by the Muskie School of Public Service for the Maine Department of Health and Human Services, this report provides the results from a survey and personal interviews that were conducted with MaineCare members who use long term services and supports -- specifically those who are on the Elder and Adults with Disabilities Waiver and those using Private Duty Nursing (PDN) Services. Report results shed light on the experience of members and their use of medical services; the coordination between the medical and home care systems; care transition services; home care services; and use of transportation services. The surveys also include information on the satisfaction of members with their workers, their use and need for assistive technology devices, and their access to other community resources.

For more information contact: Julie Fralich,

Personal Experiences with Long Term Care Services and Supports
In a report prepared for the Maine Long-term Care Ombudsman Program, researchers captured the first-hand experiences and input of long-term care supports and services consumers, family members, workers, advocates, and community members so that their voices might become an integral part of state-wide planning for such services and supports.

For more information contact:Julie Fralich,

Consumer Directed Programs for People with Dementia
Under an Administration on Aging (AoA) Alzheimer’s Disease Supportive Services Program grant, Maine’s Office of Elder Services (OES) partnered with the Muskie School of Public Service to collect qualitative information on the experiences and support needs of employers who direct services of a family member with dementia.  Using structured telephone interviews, staff from the Muskie School surveyed FPSO employers about their experiences finding, hiring, and training personal care workers and interfacing with the program’s service coordination agency, Elder Independence of Maine (EIM). 

The feedback presented in this report represents the experiences and opinions of six employers who volunteered to participate in this study.

Assessment of Programs that Serve People with Disabilities in Maine

A Cross System Profile of Maine’s Long Term Support System
Prepared in cooperation with the Maine Department of Health and Human Services as part of the State Profile Tool Grant, this document provides a new way of looking at Maine’s long term services and supports with an emphasis on developing a common approach for describing and analyzing LTSS across programs.  The report provides a comprehensive overview of Maine’s programs that serve adults and children including adults with mental illness, older adults and adults with disabilities, adults with brain injury, adults with developmental disabilities, children with need for continuing services and supports. 

For more information contact: Eileen Griffin,

Money Follows the Person
The Maine Department of Health and Human Services, with assistance from the Muskie School of Public Services (MSPS), developed an Operational Protocol approved by the Centers for Medicare & Medicaid Services (CMS) to transition 122 persons residing in nursing facilities to home and community-based settings over a five year period. The three target populations are older adults; adults with physical disabilities; and persons with complex medical, behavioral and cognitive impairments. Following the approval of Maine’s Operational Protocol, Maine received funding to implement the “Homeward Bound” demonstration grant. The Muskie School provides support to assist DHHS manage program quality in compliance with the Operational Protocol by:

  • Developing a quality management infrastructure and quality management tool and tracking database.
  • Analyzing program and quality data and preparing quarterly quality management reports.
  • Conducting an analysis of Medicaid claims and MDS Section Q data.
  • Developing a training curriculum for Transition Coordinators in transition planning and the development and implementation of individualized transition plans.
  • Supporting consumer participation in the Homeward Bound External Advisory group.

For more information contact: Danny Westcott,

Implementation of Programs and Tools for People with Intellectual Disabilities

Implementation of the Supports Intensity Scale (SIS) in Maine
Maine’s Department of Health and Human Services’ Office of Aging and Disability Services (OADS) has contracted with the Muskie School of Public Service to provide consultation and technical assistance as it implements the Supports Intensity Scale (SIS), a standardized assessment tool for persons receiving developmental services.  Created by the American Association of Intellectual and Developmental Disabilities (AAIDD), the SIS measures the practical supports and resources people with intellectual disabilities need to live meaningful, independent lives in the community.  A number of states have already adopted the SIS for use in Person-Centered Planning (PCP), and many of these states have utilized SIS data to develop resource allocation models.

Maine intends to use the SIS for both of these purposes.  OADS will pilot the SIS on a sample of waiver participants before rolling out the SIS assessment to other types of service recipients.  The Human Services Research Institute (HSRI), a national firm with in-depth experience developing payment models, will analyze Maine’s early SIS results and begin developing a resource allocation model.

During this implementation phase, Muskie’s roles will include:

  • Researching SIS policies and practices in other states;
  • Developing guidelines and procedures for SIS interviews, grievance filing, reporting, and quality management;
  • Creating management tools to ensure that SIS protocols are followed;
  • Planning stakeholder meetings; and
  • Assisting the SIS Leadership Team with ongoing project management and planning.

Work is funded under a Cooperative Agreement with Maine’s Department of Health and Human Services’ Office of Aging and Disability Services (OADS).

For more information contact: Nadine Edris, or Janice Daley

The Happy, Healthy and Well Program

The Happy, Healthy and Well project supports healthy lifestyles by creating educational materials designed to teach adults with intellectual and developmental disabilities about nutrition and fitness.  Materials are developed by a team of experts, including self advocates, members of the Maine Nutrition Network, staff from Cutler’s Disability and Aging program, and staff from Maine’s Office of Aging and Disability services.  Information is shared using guides, games, and toolkits and is presented in a way that many adults with developmental disabilities can understand and enjoy.  

Happy, Healthy and Well materials are first introduced to consumers at the agency level.  Project team members train direct service staff to use Happy, Healthy and Well materials to increase knowledge of nutrition and physical activity and to support consumers to take charge of their health and wellness. Project team members also provide technical assistance and reinforcement to agency staff as they initiate strategies to support lifestyle changes that improve health status.

For more information, please visit the project website.

Evaluation of Services Provided by Area Agencies on Aging in Maine 

Evaluation of the Aging & Disability Resource Centers (ADRCs) Project
The State of Maine’s Department of Health and Human Services (DHHS), Office of Elder Services received funds  from the Administration on Aging to expand the number of Aging and Disability Resource Centers from three to five and strengthen their capacity to serve people of all ages and with disabilities. Aging and Disability Resource Centers provide information, referral and options counseling to people who want to know about the resources and support services available in their communities.

The Muskie School evaluated the satisfaction of people who received services from the ADRCs from 2010 to 2012. The results of these surveys and a summary of comments from respondents on their experience with the ADRCs is included in this evaluation report. 

For more information contact: Julie Fralich or Mark Richards,

Evaluation of Maine’s Community Living Program
In 2009, the State of Maine’s Department of Health and Human Services, Office of Elder Services received funds from the Administration on Aging, under its Community Living Program, to strengthen the capacity of the Aging Network to target and serve individuals at highest risk for residential facility placement by offering options counseling and other flexible services.

The Muskie School evaluated the implementation of the program through consumer satisfaction surveys and surveys of staff at the agencies. Overall, options counseling recipients were highly satisfied with the help they received. Almost all respondents indicated that the information was what they wanted; was understandable and gave them choices.

For more information contact: Julie Fralich, or Mark Richards,

Evaluation of the Options Counseling Standards Project
The Maine Department of Health and Human Services received a grant from the Administration on Aging to develop standards for options counseling performed by Aging and Disability Resource Centers in Maine. Grant funds were used to standardize options counseling delivery policies and procedures, identify and invest in staff training, and implement common client tracking procedures for assessing the performance of Options Counselors.

The Muskie School is evaluating the process of implementing the new standards using multiple methods including; interviews and surveys of ADRC managers and staff; review of documents; and participation in Steering Committee meetings.  The Muskie School surveyed  Options Counselors to assess their understanding of their role, their comfort and understanding of the principles of options counseling, and any changes in their practices or functions within the agency.  The Muskie School interviewed  key managers at each ADRC to assess training requirements, information systems, or other internal processes. A final summary report is in development.

For more information contact: Julie Fralich, or Mark Richards,

Quality Management Tools for State Policymakers

Performance Measurement: Managing and Using Home and Community-Based Services Data for Quality Improvement
The purpose of this report is to outline the key components of performance measurement and to discuss their relevance and potential use in HCBS. The paper also offers practical approaches for states to gradually build a HCBS performance measurement set to serve as the foundation for their quality management activities and CMS required reporting.  

Reporting: Managing and Using Home and Community-Based Services Data for Quality Improvement
This paper walks through different types of HCBS waiver reports and includes steps for thinking through the purpose, content and format, while tailoring report presentation to meet the needs of specific audiences. Wherever possible, state examples are provided and supplemented by sample reports that combine promising features. Seven types of reports are highlighted that guide program management, inform policy development, measure program outcomes and identify areas for quality improvement.

Data Quality and Analysis: Managing and Using Home and Community-Based Services Data for Quality Improvement
Many rely on technical staff to actually conduct the technical aspects of data import, cleaning and analysis. Nevertheless, it is important for a program manager to understand the process and to provide the time and resources necessary to produce reliable and accurate data. This paper focuses on ways to assure the accuracy, discusses tools for analyzing trends and patterns and provides tips on interpreting results.

Discovery Methods for Remediation and Quality Improvement in Home and Community Based Services
This report examines the methods that states may use to remediate and improve the quality of home and community based services. It reviews the reasons why discovery methods are important and how to develop a system that is reliable and produces reports that can be used to take action.

Work Book: Improving the Quality of Home and Community Based Services and Supports
The Work Book is a tool for states to improve the quality of home and community based programs and supports (HCBS) programs. The Work Book describes a quality improvement system for all HCBS programs, not just those approved under federal waiver authority. The focus of the Work Book is on quality improvement, not compliance with requirements. It is intended to be used in three ways: To understand the components of a quality improvement process for HCBS programs; To guide the design and implementation of a quality improvement project; and To document and monitor progress of a state's quality improvement activities.

Addressing Potential Conflicts of Interest in Colorado’s Program for Persons with Disabilities

The Muskie School was requested by the Colorado Division of Developmental Disabilities (DDD) to assist in defining appropriate safeguards and protections related to potential conflicts of interest arising from the multiple roles of Community Centered Boards (CCBs).   CCBs are central to the delivery of Colorado’s home and community based services, including case management.  Over the years, stakeholders and federal officials objected to the role of the CCBs and the potential for conflict of interest in their dual positions as both service provider and case manager.  As part of our work, Muskie conducted document review, gathered stakeholder input, developed an “operational definition” of “conflict of interest”, reviewed approaches used in other states, evaluated existing safeguards and identified opportunities for improvement.