Evidence-Based Practices for Organizing Family-Centered, Community-Based Services

1. Evidence-Based Practices for Organizing Family-Centered, Community-Based Services Diane Behl, Champions for Inclusive Communities Deborah Allen, MA Consortium for Children with Special Needs Kathy Watters & Eileen Florenza, CO Health Care Program for CSHCN MODERATOR: Diana Denboba, DSCSHN Integrated Services Branch March 3, 2008 Alexandria, VA

2. Workshop Purpose • Share findings from the literature on effective coalitions • Present examples of how these practices are applied in the MCH world

3. Community Coalitions Why Did You Choose This session? “I Came to this Session Because” (Audience Participation)

4. What are Evidence-Based Practices in Coalition Building?Diane Behl and Cora PriceChampions for Inclusive Communities

5. What is a Coalition? AKA: • Collaborative partnership • Community forum • Task force • Consortium • Coordinating council A mutually beneficial relationship between individuals, governmental agencies, private and/or public sector organizations based on achieving common goals.

6. Levels of Evidence • Research—studies subject to peer review • Expert Opinion—professional/expert groups • Promising Practices/Field Lessons—implemented in the field but lack conclusive evaluation data • Theoretical Rationale—strong causal reasoning

7. How Were EBP’s Identified? Synthesized 8 published literature reviews (1996-2006) reflecting 18-80 studies each. • All were community-based coalitions • All had a health focus • Target populations varied

8. Outcomes Achieved by Coalitions • Reduced risky behaviors • Improved access to services • Reduced lead poisoning among children • Reduced infant mortality rate • Reduced adolescent pregnancy rate

9. EBPs can be Tied to the CQI Process • Building partnerships • Developing plans • Implementing in communities • Measuring and monitoring

10. Key Ingredients for Building Partnerships • Mutual respect, understanding and trust among members Typically member self-report • Include persons representing all levels of position power in decision-making, service provision, and service “customers” • Clearly-established roles for coalition members and coalition staff to prevent confusion/conflict • Clear rules about how to handle conflict/differences • Building skills, knowledge, and positive attitudes of their members • Selecting partners with links to resources and represent broad sectors • Diverse membership re: ethnicity, age, SES, and citizens impacted • Benefits of involvement are clear and outweigh the costs to members CO: Leveraging assets of community partners MA: Ensure understanding of goal/mission

11. Building Partnerships (continued) Strong leadership • Using incentives to reward/motivate • Tasks directly linked to accomplished goals • Shared leadership that emphasizes exchange of ideas, voices • Collective leadership based on democratic principles

12. Key Ingredients for Developing Plans A concrete, clear mission combined with quality plans and attainable goals is essential. • Keep focus on the coalition’s priorities and reasons for coming together • Develop short-term goals with high chance of success • Include a range of sectors from the community when appropriate (government, faith based, private providers, business) • Use open, frequent, predictable communication methods • Establish fair problem-solving and conflict resolution procedures • Plan actions that build on the strengths within the community • Develop actions for change that fit within the community’s culture CO: Use of logic model CO: Utilize family leaders in all aspects MA: Developed clear functions to guide efforts

13. Key Ingredients for Implementation (Taking Action!) • First step is often changing community attitudes • Access training opportunities, technical assistance, and support for the coalition • Allocated/paid staff, materials, work space to support the work of the coalition • Secure financial resources for program activities, staff pay, and future needs • Skilled leadership to deal with conflict management • Plan for set backs and be flexible about changing specific implementation plans CO: Implementing care coordination MA: Recognizing role of government, legislators in implementation

14. Key Ingredients for Measuring and Monitoring • Work with community to identify meaningful indicators of change; • Establish measurement plan that is based on these recommended indicators; • Hold members accountable for creating change –Even if they do not change the policies themselves, they are responsible for getting the public opinion behind them to convince legislators or agency heads to change the policies. Even if they are not teenagers, if their campaign reduces teenage pregnancies, they can feel responsible and celebrate that. • Celebrate coalition accomplishments – frequently. • Keep records of the work accomplished, ranging from meeting attendance and minutes to documentation of policy changes;  CO: ? MA: Data are collected based on multiple sources.

15. EBP Limitations • Inconsistent use of dependent vs. independent variables • Lack of controlled studies • Paucity of “treatment” information • Lack of outcomes demonstrating increased system efficiency/integration

16. …and we are making a difference.

17. Questions?

18. The Mass Consortium for CSHCN:An Organization in Transition to AdulthoodDeborah Allen, ScDBoston University SPH

19. Infancy:1998-1999 • 11 projects all doing research on CSHCN • State agencies • Academic groups • Parent organizations • Non-profits • Came together to avoid duplication and mutual interference

20. Starting with parallel play • What we found • Shared interests • Shared needs • Value of mutual support • A strong sense that this could be the foundation for collaborative improvement efforts

21. Childhood: 1999-2003 • Phase 1: Clearinghouse: Who is doing what • Phase 2: Collaboration: Who is doing something someone else could help with • Phase 3: Coordination: What could some or all of us do together • Phase 4: Consensus: Can we define a shared mission Phase 5: Crafting a 2010 action agenda Phase 6: Constructing our organization

22. The tasks of our adolescence • Mission • Structure • Leadership • Workgroups • Membership • Projects

23. Mission Together we are committed to promoting and realizing the Healthy People 2010 national objectives of building a more responsive and family centered system of care for children with special health care needs. (June 2001)

24. Member Views on Structure • Maintain and enhance diversity of participants • Special focus on family participation • Leave room for disagreement- different perspectives • Leave room for many levels of participation • Maintain non-judgmental atmosphere • Share leadership responsibilities • Permit efficient decision-making • Don’t get too bureaucratic

25. Steering Committee 12 members 5 parents 2 parent organizations 3 MDs 1 health plan 1 large clinic system 1 tertiary hospital 2 state agencies 2 public health researchers Work Groups At various times Medical home CBSC/Care coordination Transition Financing/Medical necessity Family participation Ad hoc work/advisory groups Structural Units

26. Membership • Individuals • Organizations • Seek broad participation, but • Focus on commitment of participant, rather than organizational representation • Membership = completion of form • Offers multiple levels of participation • No dues at present

27. Projects

28. Moving to Adult Autonomy • Prerequisites • Stable funding base • Rock solid public-private partnership • Deep shared understanding of mission and mandate • Strong mutual trust • Realistic program expectations • Willingness to take risks

29. Mission and Mandate • Mission: • Continues to be the national agenda • Mandate • We must assure • Diverse leadership team • Broad constituency • Visibility • Program and policy innovation • Recognition and support for government role • Improved collection and use of CYSHCN and disability data

30. …and we are making a difference.

31. Questions?

32. Colorado Community Coalition BuildingKathy Watters & Eileen FlorenzaCO Health Care Program for CSHCN

33. Today’s Information: • Respite Care Coalition Building Steps • Other Examples of Local Coalitions • Action Guide

34. Considerations 1. Do you Have a Champion in Your Title V Program that Promotes Local Coalition Building?

35. Considerations Continued: 2. Does Your State Culture Involve Strong Central or Local Control? The Culture of Colorado is Strong Local Control. We Support our Local Communities.

36. Considerations Continued: 3. What is Your Structure or Mechanism for Implementing Local Coalitions? Colorado Title V/CSHCN Contracts With All Local Public Health Agencies. This is the Mechanism for Coalition Building for CSHCN.

37. Respite Coalitions 8 Steps

38. Respite Care Coalition Building Steps EBP Building Partnerships • State champion encourages/inspires a shared vision, provides consultation, and technical assistance. • State champion connects with the pulse of the community-utilizing relationships with family agencies to know the “buzz” of what gaps exist. Principle #2 Constituency.

39. Respite Care Steps Continued 3. Local champions are identified--state champion leads with a “can do” approach providing steps or P&Ps, with other community stakeholders sharing the vision and responsibilities. Principle #1 Collaborative Leadership, Principle #5 Role of Government

40. Respite Care Steps Continued 4. Convening diverse perspectives-community call to action! Inclusive approach to leadership Principles #2 Constituency, #3 Visibility of CSHCN

41. Steps Continued EBP Developing Plans • Develop implementation plan-timelines, responsible parties, sustainable funding. Principle #4 Strategic thinking, #5 Role of Government, #6 Data Collection

42. Steps Continued EBP Implementing in Communities 6. Program implementation and development principles, what’s working (keep it). Value statements (Respite: extended time for families, community involvement, student/youth involvement) Maintaining and being accountable to the shared vision. Principle #1 , #6

43. Steps Continued EBP Measuring and Monitoring 7. Identify outcomes for the community, family, child. 8. Measure outcomes for community, family , child

45. Community OutcomesFamily OutcomesChild Outcomes

46. Other Coalition Examples • Faith Communities Coalitions • Coalitions for Screening, Assessment and Referral for CSHCN • Early Intervention and Public Health Coalitions

47. Proposed Coalitions • Newborn Hearing Screening and Follow-Up Coalitions • Medical Home Quality Improvement Coalitions

48. Colorado MCH Action Guide HandoutNational Adolescent Health Leaders

49. …and we are making a difference.

50. Questions?