The Importance of IM4Q

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The ODP IM4Q Program - Overview

As part of its continuous quality improvement efforts, the Pennsylvania Office of Developmental Programs (ODP) provides funds to all Administrative Entities (AE) to contract with local Independent Monitoring for Quality (IM4Q) programs - non-profit entities which do not provide direct service/supports to people with intellectual disabilities. IM4Q gathers, analyzes and reports on information to improve satisfaction and everyday living outcomes for individuals and families who receive intellectual disability services through ODP. The focus on everyday living outcomes such as choice and control, inclusion, relationships and rights makes it possible to apply IM4Q or quality practices to individuals wherever they are living and working.

IM4Q conducts face-to-face monitoring interviews with a sample of people receiving services/supports from ODP. With the interviewee's permission, each program also conducts a telephone interview with a family member, friend, or guardian. Based on these interviews, reports are provided to supports coordination organizations (SCOs) within each AE for follow-up action, and data are recorded for system wide quality improvement.

Each local IM4Q program has a governing board, which is comprised primarily of people with disabilities and their families. The board hires a coordinator who selects teams of people with disabilities, family members, and interested others to conduct the interviews using the statewide interview instruments.

The IM4Q Program enters data collected through the interviews into the ODP Home and Community Services Information System (HCSIS), along with data collected for the National Core Indicators (NCI). With the interviewee's permission, the local IM4Q program submits to the AE a written report with specific considerations to improve the person's life. The AE works with the SCO whose supports coordinators work with a provider agency and/or family/guardian to address considerations. The local IM4Q program is informed of what changes have occurred in a person's life, through the process agreed upon between the AE and the local IM4Q program. The intent of the report is not only to improve the interviewed person's life, but also to assist the AE and provider agency to continuously improve quality. In addition, the IM4Q data are analyzed by ODP's contracted entity, which produces both statewide and individual AE reports. All aggregate reports are public documents.

The Deputy Secretary of the ODP appoints an IM4Q Statewide Steering Committee that independently reviews State reports and makes recommendations to ODP to improve IM4Q practices, policies, operations, supports and services. The Deputy Secretary also assigns IM4Q responsibilities to ODP staff and assigns resources for the operational needs of the IM4Q Program.

The Importance of IM4Q - Consumer, Family and Citizen Involvement

The IM4Q data from interviews with people receiving at least one ODP service and their Family/Friend/Guardian provides:

Consumer/Family/Guardian Perspective: IM4Q is the ONLY INDEPENDENT source of information from families/consumers gathered by ODP allowing consumers, family members, and guardians input about the ODP service system. On average, 5300 individuals are interviewed yearly and 1600 Family Surveys are collected yearly. Over the 19 years of the program, 111,700 people supported by ODP and close to 42,500 family members have been interviewed.

Employment: Local IM4Q programs employ people with disabilities. On average, 640 people work in IM4Q yearly, 39% of whom are people with disabilities, 41% are family members of people with disabilities, and 20% are Commonwealth residents interested in disability issues. For some people with disabilities this is their first paid job and the experience has led them to other employment.

Board Member Participation by Consumers/Families: IM4Q programs have boards comprised of 51% people with disabilities and family members of people with disabilities. On average, 274 people yearly participate in IM4Q Boards, 39% people with disabilities, 37% family members of people with disabilities, and 24% interested Commonwealth residents.

Monitor Decision-making Participation: IM4Q monitors (family members/consumers/other non-human service people) record (i.e. write a consideration) what individuals and family members indicate would make their lives better, participating in AE and state level decision-making.

IM4Q Data

Leads to ODP Policy Changes:

The data collected has led ODP to institute policy changes in order to improve its service system and customer satisfaction. For example:

IM4Q data indicated that many people who were interviewed did not have an effective form of communication. As a result, an ODP Communication Bulletin was developed in which AEs were to emphasize communication training for providers and supports coordinators; supports coordinators were also instructed to regularly review consumer's access/use of technology based on appropriate, clinical assessment.

IM4Q data indicated that many people served did not have a valid form of identification. ODP issued a memorandum that all people served in the ODP system are required to have identification cards.

IM4Q data indicated many people wanting to vote were not able to do so. Supports coordinators are now directed to regularly ask people if they want to vote and if not registered, they will be provided the necessary assistance to register to vote.

IM4Q data indicated that many people served were having their mail read without being asked. An ODP memorandum to providers states that a person's privacy with regard to receiving mail must be protected.

Supports the Centers for Medicare & Medicaid Services (CMS) Waiver Assurances + the Home & Community-Based Services Final Rule:

IM4Q is one method that ODP uses to address waiver assurances with regard to health and safety. ODP can use IM4Q data not only to support the minimum requirements, but also to address major quality improvement issues.

Used to Make Data Comparisons:

ODP, by using National Core Indicator (NCI) data, can compare quality of life indicators at the national, state, regional, and county (AE) level with NCI reports issued by the Human Services Research Institute (HSRI), as well as compare data included in IM4Q Statewide Summaries created by the Institute on Disabilities at Temple University.

Used to Improve ODP System:

AE MH/ID Boards, AE Quality Councils and provider agencies are now using IM4Q data to improve their practices, which leads to better services for people with intellectual disabilities.

Used by Providers for Improvement:

In the same ways that AEs are using IM4Q data to inform their practices, providers now have enough data to analyze and improve their practices with regard to quality improvement efforts for the individuals they support.

Has Longitudinal Usefulness:

The 19+ years of IM4Q data can be used in the ODP Quality Management system as an integral part of improving ODP services. Data can be examined using trend analysis to look for patterns of performance.

Used as a Planning Tool for ODP and AEs:

ODP will use IM4Q to gather information on their business questions to assist with yearly and future planning activities; AEs use IM4Q data for consideration in quality management plans and actively use IM4Q data to make change locally. The IM4Q Statewide Steering Committee, an advisory body to ODP, uses the reports developed by HSRI and the Institute on Disabilities at Temple University to make policy/practice recommendations to ODP.

IM4Q is a Recognized Program of Distinction

IM4Q presentations have been made on the state, national, and international levels, such as the Pennsylvania Advocacy and Resources, Reinventing Quality, the American Association of Intellectual and Developmental Disabilities, TASH (an international advocacy association of people with disabilities, their family members, other advocates, and people who work in the disability field), the Association of University Centers on Disabilities, the Social Role Valorization (Australia), and the International Association for the Scientific Study of Intellectual and Developmental Disabilities (Australia) conferences.

List of published articles, book chapters, and state/national/international conference presentations on IM4Q:

• "Independent Monitoring for Quality: Pennsylvania's Experience," in Quality Enhancement in Developmental Disabilities, Valerie J. Bradley & Madeleine H. Kimmich, Paul H. Brookes, MD., Celia Feinstein & Guy Caruso, 2003
• Inter-rater reliability of the Pennsylvania independent monitoring for quality program's essential data elements scale, Anthony J. Goreczny, Bree Miller, Brenda Dunmire, Geoffrey J. Tolge; Chatham College, Woodland Road, Pittsburgh, PA 15232, USA, Research in Developmental Disabilities 26 (2005) 231-241
• Community involvement and socialization among individuals with ID, Amy L. Kampert, Anthony J. Goreczny; Chatham College, Woodland Road, Pittsburgh, PA 15232, USA, Research in Developmental Disabilities, 28 (2007) 278-286
• Attitudes toward individuals with disabilities: Results of a recent survey and implications of those results, Anthony J. Goreczny, Erin E. Bender, Guy Caruso, Celia S. Feinstein; Research in Developmental Disabilities 32 (2011) 1596-1609
• Statewide Summaries created by the IM4Q technical advisors at the Temple University Institute on Disabilities

Unique Aspects of IM4Q

Flexibility and Utility of IM4Q: The IM4Q process has been used to collect data and evaluate various aspects of the ODP service system. In addition, data on specific subsets have also been collected, such as people residing in personal care homes, youth in transition, employment, habilitation, and life-sharing. AEs have been able to add their own questions to the standardized survey instrument and have requested specific reports from their local program.

Major Concerns are Discovered and Investigated to Address and Prevent Harm: IM4Q acts as an independent safeguard for ODP by addressing the health and safety of the people interviewed. IM4Q teams report any real or perceived incidents (Major Concerns) jeopardizing the health and safety of people receiving services, averting potential or additional harm or injury.

Impact on the Consumer Interviewed: The people interviewed lives improve as a result of the monitor sharing with the AE written considerations of what would improve a person's life. The AE shares the consideration(s) with the Supports Coordination Organization (SCO) who through its supports coordinators shares the consideration with the provider/family to work toward change in the person's life, what is called "closing the loop."

Significance of Participating in the National Core Indicators (NCI) Project: Pennsylvania has participated in the National Core Indicators Project since its inception in 1998. 47 states and the District of Columbia currently participate in the project, and the Administration on Intellectual and Developmental Disabilities (AIDD) has placed resources into the Projects of National Significance for more states to begin. The federal government will use this data in benchmarking state practices.

For more information about IM4Q please contact

Mary Kay Cunningham, Assistant Director of Technical Assistance
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Voice: 215-204-1485 | Fax: 215-204-6336

Guy Caruso, PhD, Coordinator, Western PA Office
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Voice: 724-272-6162 | Fax: 724-591-5448