Independent Monitoring for Quality
Every year, thousands of people with disabilities, family members and support professionals in Pennsylvania are interviewed by the Independent Monitoring for Quality (IM4Q) project to learn about the overall quality of life for people who receive support through the Office of Developmental Programs (ODP) in Pennsylvania. The key objective of IM4Q is to provide information that might help improve the quality of life of people with disabilities.
The interviews are conducted in each of Pennsylvania's 48 county Mental Health/Intellectual Disabilities programs by 38 select, independent programs throughout the Commonwealth. Interview teams, each including a person with a disability or a family member of a person with a disability, are carefully selected and thoroughly trained before the interviewing begins. See examples of data collected from our most recent survey.
The Institute on Disabilities developed the program along with collaborators including people with disabilities, created the survey, provided training and technical assistance to the interviewers, analyzed the data, and produced annual statewide summary reports along with reports for each county program.
In 1997, Pennsylvania's Office of Developmental Programs (ODP) (then known as Office of Mental Retardation) began disseminating its multi-year plan, conveying its vision, values and goals. Among the recommendations in the plan, developed by ODP's Planning Advisory Committee (PAC), was to create the capacity/mechanism to monitor the quality of life of those people who receive services from ODP. The monitoring should be done by people/agencies outside of the Intellectual Disabilities system.
After much debate, a PAC subcommittee, which included consumers, families of consumers, providers, advocates, counties, direct care staff and ODP staff, recommended the process of "independent monitoring." A pilot program was conducted in 1999-2000. The final report from the pilot program was used as the basis of the 2002 State Report of Independent Monitoring for Quality. In addition, these findings, along with recommendations from the IM4Q Steering Committee were used as the foundation for the development of a 2003 Quality Action Plan that is being implemented with all Intellectual Disabilities system stakeholders.
A full description of the IM4Q methodology and procedure is included in the annual summary report (available upon request - see Overview section above).
At the request of ODP, counties select local IM4Q Programs to conduct the interviews. All programs are screened by the IM4Q Steering Committee. Criteria for selection includes: independence of the projects from service delivering entities, consumer and family involvement on governing boards and involvement of individuals receiving supports and families in data collection activities.
The Institute on Disabilities trains local IM4Q programs on the interview instrument, the Essential Data Elements (EDE). The EDE contains 101 questions, 46 of which can only be answered by a person with a disability and is comprised of the following sections: Pre-survey; Pre-survey addendum; Satisfaction; Dignity, Respect and Rights; Choice and Control; Relationships; Inclusion; Monitor Impressions; Major Concerns; Family/Friend/Guardian Survey.
The local IM4Q programs assigned interview teams to individuals randomly selected to be monitored, as sent to them by ODP. Each team is comprised of a minimum of two people, one of whom must be an individual with a disability or a family member of a person with a disability. Teams might also include other interested citizens who are not a part of the Intellectual Disabilities system. Participation in the interview is voluntary and the home visits are scheduled with the individual to be surveyed.
The collected data is sent to the Institute on Disabilities for analysis and the creation/distribution of reports.
Finally, each local IM4Q Program has developed a process, referred to as "closing the loop" (follow-up) activity with the county with whom they contract, to ensure that issues related to individuals, as well as systemic issues on the provider or county level, are addressed.
For more information about IM4Q please contact
Mary Kay Cunningham, Assistant Director of Technical Assistance
Voice: 215-204-1485 | Fax: 215-204-6336
Guy Caruso, PhD, Coordinator, Western PA Office
Voice: 724-272-6162 | Fax: 724-591-5448
James A. Lemanowicz, Assistant Director of Research