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Independent Monitoring for Quality: An Evidence-Based Strategy for Building and Sustaining Effective Programs

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Title: Independent Monitoring for Quality: An Evidence-Based Strategy for Building and Sustaining Effective Programs


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
  • guyucdd_at_consolidated.net
  • 724-934-1142
  • MaryJo Caruso
  • Care Break Coordinator
  • The Watson Institute
  • maryjoa_at_thewatsoninstitute.org
  • 412-749-2863

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 peoples 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 persons
    Individual Service Plan - ISP)

10
Respite Questions
  • 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
  • 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 90
2004 90
2005 89
2006 89
2007 89
2008 90
  • 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, 2000-2008
YEAR DIGNITY SCALE
2000 79.9
2001 78.5
2002 81.4
2003 80.3
2004 81.5
2005 81.5
2006 81.4
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, 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
25
Respite Question
  • What Choice Questions Would You Develop for
    People Receiving Respite and Their Family
    Caregivers?

26
Inclusion Scale, 2000-2008
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 Todays 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
  • guyucdd_at_consolidated.net
  • 724-934-1142
  • MaryJo Caruso
  • Care Break Coordinator
  • The Watson Institute
  • maryjoa_at_thewatsoninstitute.org
  • 412-749-2863
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