1. Best Practices in Health and Safety By Valerie Bradley Human Services Research Institute

2. Signs of Change in Performance Management No longer just better than the institution Rooted in outcomes Emphasis on enhancement Changing role of the state Changes in experiences of families and people with mental retardation Changes in accreditation approaches Outcomes Expectations Inclusion

3. More Signs of Change Movement away from prescriptive standards Emphasis on CQI Exploration of self-assessment Collaborative development of standards Inclusion of customer satisfaction Satisfaction CQI Consensus

4. Person-Centered Systems: Facilitate individual choice Support relationships and community membership Encourage natural supports Encourage health, well-being and safety Foster productivity and participation in meaningful work Maximize self-determination Support families Build staff and provider capacity

5. Public Quality Assurance Responsibilities Assuring that individuals are free from abuse, neglect, and exploitation; Protecting the rights of individuals and families; Assuring accountability in the use of public dollars; Assuring that individuals have access to necessary professional services; Evaluating the effectiveness if service and supports; Assessing the performance of service providers

6. Changing Quality Landscape Exposure of fault-lines in the system (e.g., HCFA and the press) Expansion of supports to individuals on the waiting list Emergence of self-determination Olmstead decision Struggles with MIS applications Direct support staff shortages

7. Critical Constraints Consolidation of providers Management of multiple systems “Generic” approaches to quality Increasing gray areas in public jurisdiction Pressure from HCFA Lack of collaboration with sister agencies

8. Emergence of Performance Indicators First appeared in behavioral and acute care Provide some “cues” for managing these complex systems Highlight impact of cost containment Illuminate what’s working Provide early warning signs For more information: www.hsri.orgwww.hsri.org (Core Indicators Project)

9. Project Beginnings NASDDDS and HSRI collaboration Launched in 1997 Seven field test states + steering committee ~60 candidate performance indicators Development of data collection instruments

10. Current Participating States Arizona Connecticut Delaware Hawaii Illinois Iowa Indiana Kentucky Massachusetts Montana Nebraska North Carolina Oklahoma Pennsylvania Rhode Island Utah Vermont Washington West Virginia Wyoming

11. What will CIP accomplish? Nationally recognized set of performance and outcome indicators for developmental disabilities service systems Benchmarks of performance Trend data at the state level Broad dissemination to all stakeholders

12. What are the Core Indicators? Consumer Outcomes: Satisfaction, choice, employment, community inclusion, natural supports, family supports… System Performance: Service expenditures and utilization, access… Protection of Health and Safety: Injuries, crime victimization, mortality data… Provider Agency / Workforce Stability: Staff turnover…

13. Data Sources Consumer Survey Family Support Survey (plus new version for families with kids) Family/Guardian Survey Provider Survey (limited) DD System MIS

14. Consumer employment data Where people work: Duplicated counts Aggregate N = 3900 (11 states) 27.7% -- supported employment 21.7% -- group employment (enclave/crew) 40.4% -- facility-based employment 36.8% -- non-vocational day supports

15. Types of Employment Supports by State

16. Community Inclusion

17. Choice and Decision-Making

18. Consumer Outcomes Access 81% of respondents reported that they almost always have a way to get where they want to go Safety 93% of respondents report feeling safe in their neighborhoods 96% report feeling safe at home

19. Health Outcomes

22. Family Survey Comparisons More positive responses on Family/Guardian Survey (this group was generally older and received more supports) Out-of-home families more satisfied with individual supports than those with family members living at home (84% vs. 64%) Much greater variation on satisfaction ratings for the in-home group (50% to 70%)

23. Staff Stability Day support providers report: Lower turnover Current staff have been employed longer Half as many vacant positions (both FT and PT) Both types of agencies report: Staff who left within the last year were employed on average about 19 months Part-time position vacancies are much higher than full-time position vacancies

24. For more information… Visit HSRI’s website: www.hsri.org/cip/core.html

25. Pennsylvania OMR Independent Monitoring Project Provides an independent evaluation of the provided by the PA mental retardation system Based on personal interviews with consumers and families Reports issued to counties and the state containing with findings and recommendations for program improvements. The Mission of the Independent Monitoring Project is to: ID outcomes achieved by persons receiving supports Measure achievements Recommend improvements Continually promote the values of Every Day Lives

26. Pennsylvania OMR Independent Monitoring Project Continued How does the process work? Monitors have a contract with the local County MH/MR facility Interviewing teams are made up of consumers, families, and other interested people Reports prepared by Temple University Reports are used by providers, counties, and the state to improve the quality of services provided and to make changes where necessary Reports also reviewed by a state wide steering committee that advises the Office of Mental Retardation on actions to be taken.

27. Massachusetts DMR Risk Management System Implemented in 1999 Mission is to balance the responsibility of a public agency to keep individuals with mental retardation safe while promoting independence and self determination. This involves: Creating a foundation of trust between the state and individuals that does not limit freedom assists the individual to make safe choices. Insuring that there is a strong management system and framework that the level of supervision and oversight is appropriate. Emphasizing safeguards and strategies that result in reasonable risk, and a balance between risks and responsibilities.

28. Massachusetts DMR Risk Management System Continued The DMR Risk Management System has 4 basic components: Risk Identification and Prevention A review process conducted by service coordinators. Risk Assessment and Planning Persons determined to be at-risk will have a risk management planning meeting with their planning team. Risk Training, Consultation, and Support Training for DMR staff working with person at-risk; also provider training and public education efforts. Risk Management System Oversight Activities A standardized process coordinated by the Central Office Risk Management Director.

29. California DDS Wellness Initiative A 1996 statewide initiative by DDS to promote quality medical, dental, and mental health services for all Californians with DD. Activities include: Regional Projects funding of 86 regional projects that address Abuse, Aging, Behavioral, Dental, Health Documentation, Health Assessment, Medication, Mental Health, Nutrition, Telemedicine, Training, and Women’s Health Publications includes the Wellness Digest Newsletter and The Road to Wellness, a booklet on accessing Medical Services Partnership Activities Provide training & resources for medical professionals, universities, regional centers, care providers, consumers, and families

30. New Mexico Continuum of Care Project Mission: to provide quality health care for people with DD including: Creating learning opportunities, Promoting best practice policies, and Offering specialized developmental disabilities services. Assumptions: Health care services should be available and delivered in a comprehensive and coordinated manner from infancy to adulthood Health services should be multidisciplinary Health care professionals need to becoming more knowledgeable and competent in dealing with developmental disabilities Health care should honor personal values, promote quality of life, and respect cultural differences.

31. Healthy People 2010: Disability & Secondary Conditions Healthy People 2010 (released by HHS in 2000) is a set of health objectives over the first decade of the new century. Chapter 6: Disability and Secondary Conditions was developed by the Center for Disease Control and Prevention, the U.S. Dept. of Education, and the National Institute on Disability and Rehabilitation Research. The objectives of this chapter are to: promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.

32. Healthy People 2010: Disability & Secondary Conditions Misconceptions Four main misconceptions about people with disabilities: all people with disabilities automatically have poor health, public health should focus only on preventing disabling conditions, a standard definition of “disability” or “people with disabilities” is not needed for public health purposes, and the environment plays no role in the disabling process. Lead to an under emphasis on health promotion and disease prevention and an increase in the occurrence of secondary conditions. Challenging these misconceptions will clarify the health status of people with disabilities and address the environmental barriers that undermine the health, well-being, and participation in life activities of people with disabilities.

33. Healthy People 2010: Disability & Secondary Conditions Objectives Summary of Disability Objectives for 2010: Include standard definition of people with disabilities in data sets Reduce feelings of depression among children with disabilities Reduce feelings of depression interfering with activities among adults with disabilities Increase social participation among adults with disabilities Increase sufficient emotional support among adults with disabilities Improve satisfaction with life among adults with disabilities

34. More Recommendations Reduce congregate care of children and adults with disabilities Create employment parity between adults with and without disabilities Increase the number of children and youth with disabilities included in regular education programs Increase accessibility to health and wellness programs for people with DD Increase access to assistive devices and technology for people with DD Reduce environmental barriers affecting participation in activities Increase public health surveillance and health promotion

35. Resources: To find more info on the projects presented you can visit the following web sites: PA Independent Monitoring Project www.dpw.state.pa.us/omr/omrImt.asp MA Risk Management System www.qualitymall.org (QA Store, Monitoring Health & Safety Dept.) CA Wellness Initiative www.dds.ca.gov/Wellness/main/Well01.cfm NM Continuum of Care star.nm.org/coc/ Healthy People 2010 www.health.gov/healthypeople/Default.htm

36. Important Next Steps Place individual outcomes at the center of the system Enlist assistance of consumers and families Identify key areas of performance Link technology with need for information Look at the costs and benefits of existing approaches Make results available and accessible Get serious about uniform reporting of critical health and safety events Develop staff credentialing and expand training options Reassess roles of case managers Refine performance contracting Expand understanding of person-centered planning

37. Final Words “ Beware the Continuous Improvement of Things Not Worth Improving ” W. Edward Deming