Independent Monitoring for Quality: An Evidence-Based Strategy for Building and Sustaining Effective Programs Guy Caruso and MaryJo Caruso 2011 National Lifespan Respite Conference Phoenix, AZ

Presenters Dr. Guy Caruso Western Coordinator Institute on Disabilities at Temple University guyucdd@consolidated.net 724-934-1142 & MaryJo Caruso Care Break Coordinator The Watson Institute maryjoa@thewatsoninstitute.org 412-749-2863

Goals of the Presentation 1. Learn about the PA Independent Monitoring for Quality (IM4Q) evidence-based program and it's 10 years of experience with collecting, summarizing and sharing results. 2. Identify how IM4Q has relevance to respite providers looking for a consumer driven tool to collect data to make evidence informed decision making. 3. Enhance current program functioning, identify quality standards and develop some possible respite programs based on the monitoring for quality model.

IM4Q Beginnings 1997, the State developmental disabilities Planning Advisory Committee recommended that the State develop Independent Monitoring for Quality (IM4Q) as part of service system modernization Designed to be conducted by people with developmental/other disabilities, families, and other interested people Does not measure compliance with government regulations or service/provider quality, and instead it measures people’s quality of life outcomes

Quality of Life Areas Measured Satisfaction Dignity, Respect and Rights Choice/Control Relationships Inclusion Competence, Personal Growth Supports for the Person Physical Setting (These are part of the interview survey – Essential Data Elements)

Respite Questions What Quality of Life Areas Would a Respite Program Measure? Who Would Develop the Respite Survey Instrument? For Whom?

Describing IM4Q & What it Does IM4Q programs are County contracted/State approved/funded independent/conflict-free 501c3 entities with local governing boards that are person/family-driven, and community-based The County and local IM4Q Program follow State protocols and practices to ensure monitoring is done consistently across the state (IM4Q Manual)

Respite Questions Who Would Oversee an independent Statewide Respite evaluation component? Who Would Develop Guidelines for the independent Respite evaluation component?

Describing IM4Q & What it Does The program sends a trained 2 person team including at least one person with a disability/family member out on an interview with a standardized interviewing instrument - Essential Data Elements (EDE) Interviews generate a team considerations report sent to the County to forward to the provider and supports coordinator to discuss/address the consideration (often added to a person’s Individual Service Plan - ISP)

Respite Questions Once an Interview is Completed Who Would be on a Respite Interview Team? Once an Interview is Completed Where Would the Results Go? What Would be Done with the Results?

Describing IM4Q & What it Does The State has a contract with the Institute on Disabilities to develop standardized state, County, and other relevant reports

Respite Questions What Would Happen With the Reports? Who Would Develop Reports and Analyze the Data? What Would Happen With the Reports?

Describing IM4Q & What it Does The State: Has a statewide IM4Q Steering Committee to advise it on IM4Q with diverse stakeholder representation (e.g., self advocates, providers) Contracts with the Institute on Disabilities to have technical advisors for IM4Q

Respite Questions What State Committee Structure Would You Have to Advise the Respite Evaluation Component? Would There be Technical Advisors Whose Role is to Continually Improve the evaluation program and ultimately the program? If so, from where?

Yearly IM4Q Interviews 6,000 interviews a year across state with consumers 3000 with Family/Friend/Guardians

Respite Questions How Many Interviews Would You Want to Conduct a Year? Who Would be Interviewed? People Receiving Respite? Families of People Receiving Respite? Persons Providing Respite?

Outcomes – Various Reports A process for change at the individual level has been developed between each local program and County (“Closing the Loop”) Statewide steering committee makes recommendations for change at the systems level to the State (e.g., Communication Bulletin)

Respite Questions What Process Would be Created to Insure People/Family Caregivers Receiving Respite are Satisfied with What They Receive? Would the Lifespan Respite Network / Coalition, Respite State Advisory Group Make Recommendations for Program or Statewide Improvement and to Whom?

Almost a Decade of IM4Q Data The following graphs and charts depict some of the results over the years.

Satisfaction: Do you like where you live? YEAR SATISFACTION 2000* - 2001 89% 2002 90% 2003 2004 2005 2006 2007 2008 Percent who like where they live has remained stable over time These answers obtained in consumer interview * Wording change in question

Respite Question What Satisfaction Questions Would You Develop for People Receiving Respite and Their Family Caregivers?

Dignity Scale, 2000-2008 YEAR DIGNITY SCALE 2000 79.9 2001 78.5 2002 81.4 2003 80.3 2004 81.5 2005 2006 2007 81.8 2008 82.5 Scale ranges from 0 to 100, with a higher score indicating higher levels of dignity and respect Dignity and respect for the individual has remained stable from year to year. These answers obtained in consumer interview

Respite Question What Dignity Questions Would You Develop for the People Receiving Respite and Their Family Caregivers?

Choice Scale, 2000-2008 Scores on the Choice and Control Scale could range from 0 to 100, with a higher score indicating more opportunities to exert choice and control Greatest opportunity for choice and control achieved in 2008 YEAR Choice Scale 2000* - 2001* 2002 40.2 2003 43.0 2004 42.3 2005 46.9 2006 47.2 2007 47.9 2008 48.2 * Scale changed significantly in 2002

Respite Question What Choice Questions Would You Develop for People Receiving Respite and Their Family Caregivers?

Inclusion Scale, 2000-2008 Inclusion Scale 41.8 40.2 40.8 YEAR Inclusion Scale 2000 41.8 2001 40.2 2002 40.8 2003 41.9 2004 40.5 2005 42.4 2006 41.5 2007 41.4 2008 42.1 Scores on the Inclusion Scale could range from 0 to 100, with a higher score indicating greater inclusion (going more frequently to places in the community) Inclusion scores have remained stable over time

Respite Question What Questions Would You Use to Measure Community Inclusion for the People Receiving Respite and Their Family Caregivers?

Revisiting Today’s Goals Relevance to Respite How does IM4Q have relevance to respite providers who are looking for a consumer driven tool to collect data to make evidence informed decision making? Possible Respite Models How could possible respite programs that enhance current program functioning and identify quality standards be developed based on the monitoring for quality model?

Closing Questions / Comments? Dr. Guy Caruso Western Coordinator Institute on Disabilities at Temple University guyucdd@consolidated.net 724-934-1142 MaryJo Caruso Care Break Coordinator The Watson Institute maryjoa@thewatsoninstitute.org 412-749-2863