1. 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

2. Presenters Dr. Guy Caruso Western Coordinator
Institute on Disabilities at Temple University
&
MaryJo Caruso
Care Break Coordinator
The Watson Institute

3. 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.

4. 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

5. 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)

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

7. 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)

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

9. 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)

10. 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?

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

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

13. 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

14. 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?

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

16. 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?

17. 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)

18. 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?

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

20. 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

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

22. Dignity Scale,
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

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

24. Choice Scale,
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

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

26. 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

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

28. 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?

29. Closing Questions / Comments? Dr. Guy Caruso Western Coordinator
Institute on Disabilities at Temple University
MaryJo Caruso
Care Break Coordinator
The Watson Institute