Family Partnerships: Improving Quality of Care for Children with Special Health Care Needs in Managed Care Plans

1. Family Partnerships: Improving Quality of Care for Children with Special Health Care Needs in Managed Care Plans July 17, 2003 Sponsored by the Division of Services for Children with Special Health Care Needs

2. Lynda Honberg Division of Services for Children with Special Health Care Needs,Maternal and Child Health Bureau

3. Shared ResponsibilitiesBuilding Partnerships between Health Plans and Families Caring for Children with Special Health Care Needs Susan G. Epstein New England SERVE July 17, 2003 MCHB Webcast

4. Why Build Partnerships? • Responsibility for assessing and improving the quality of care is shared by all stakeholders. • Health plans • Purchasers • Providers • State agencies/public policy makers • Researchers and... • Consumers/families

5. In a complex health care system... • The quality of care for individuals is dependent on their knowledge of how to navigate the system, and • The quality of the system of care is dependent on its knowledge of the needs and experience of its users.

6. CSHCN low prevalence use multiple systems public/private chronicity dependent on changing technology Families high importance both providers & consumers of care need updated information heavy users of health care system Why Families are experts

7. Why Do It?Health plan perspective • Belief in real benefits of consumer expertise • Leadership - Champion • Purchaser requirements • Environmental incentives • Consistent with mission • Importance of specific population • Limitations of consumer satisfaction tools

8. Why Do It?Consumer Perspective • Improve quality of care • Share expertise - tell the truth • Eliminate adversary mentality • Help other families “You can’t improve systems without our help.”

9. Process To be heard Respect & dialogue Avoid labels Allow challenges Family-centered Focus on family strengths *Family Participation Statement-Advisory Council NHP, May 1999 Outcomes Commitment to implement changes Build systems that respect families as partners Increase family supports within health plan Expectations of Family Advisors*

10. Challenges • Discomforts • Identifying consumers • Intensity of supports needed • Language & cultural diversity • Variability of preparation • Preparation of staff • Mentoring

11. Ladder of Consumer Participation* • Minimalist……………………..non-participation • Informing/Consulting…legitimate participation • Partnership….shared decision-making; negotiation • Delegated Power….directly linked to policy making, control, governance * adapted from Arnstein, SR, A Ladder of Citizen Participation, Journal of the American Planning Association, vol 35, no.4,July 1969, pp. 216-224

12. Supports for Family Partnerships • Training…on both sides • Orientation - role definition, purpose of partnership • Preparation for specific tasks • Collaboration • Mentoring • Reimbursement • stipend • travel, childcare

13. Shared Responsibilities:Toolkit for Health Plans

14. Purpose of Toolkit • Get attention of health plans • Identify CSHCN as a population • Make a business case for investing in quality improvement • Provide range of tools/resources to improve systems of care for CSHCN

15. Introductory Brochure • WHO are CSHCN? • WHY identify CSHCN? • WHY invest in collaboration? • HOW can health plans improve quality of care? • WHAT is ROI?

16. Identify CSHCN Screener QuICCC-R Clinical Risk Groups Administrative data algorithm Improve Health Plan Checklist Organizational Readiness Measures Best Practices Collaborate Family Survey Provider Survey Family Participation Statement Family Advisor job description List of state Title V contacts Reporting format for information to PCPs Tools

17. How Can Health Plans Improve Quality of Care? • Information for families • Simplify access to care • Enhance coordination • Match resources to needs • Help families navigate system • Promote best practices

18. Consumer Surveys Identifying barriers within the system Advisory Roles Advisory Committees Focus groups Standing Committees Grievance Quality Ethics Staff/Consultant Roles Review of written materials Design outreach strategies Training for health plan staff Quality Improvement Teams How can Families Assist Health Plans to Improve Quality?

19. For more information on Shared Responsibilities Toolkit... http://www.neserve.org/publications/srt_overview.html

20. Family Partnerships: Putting it into Practice Children’s Choice of Michigan • Managed care program in Michigan for the Children’s Special Health Care Services population. • Serves any child who meets the state requirements determined by their qualifying diagnosis, and who elect to participate. • Contract with Title V requires family partnerships.

21. Children’s Choice Promise to members: • Family Centered Services • Community Based Care • Care Coordination

22. Family Centered Care at Children’s Choice • Respects critical role of family in caring for children with special needs. • Family approval of IHCP required. • Education and Information sharing • Consumer staff requirements • Members as Advisors

23. Challenges of Member Involvement • Unnatural Alliance • Requires a shift in the power base • Unfamiliar Territory, new way of doing business • Requires staff and financial resources • It’s hard work

24. Benefits of Member Involvement • Adds expertise – families are experts in receiving services • Provides up front evaluation • Shared Responsibility • Economic and operational efficiencies • Powerful marketing tool • Creative problem solving

25. The Good News! • We have good role models for partnership: • Title V programs for • HIV and AIDS programs • Children’s Hospitals • Maternity Care • Early Intervention

26. Multiple Roles For Member Participation • Administrative staff • Member Services staff • Liaison to Community Groups • Board members • Quality Advisors

27. Manager of Family Centered Services • An employee of DMC who was enrolled in CSHCS or has a child who is/was enrolled in CSHCS • Monitors quality of care and ease of delivery • Monitors policy and procedures • Assist family in role as advocates • Member education • Monitors member appeals and grievances • Provider education on Family Centered Care

28. Internal Policy and Practices • Review all policies and procedures • Participate in Senior Mgmt Team • Participate in Clinical Improvement Team • Monitor member appeals and grievances • Participate in Quality Advisory Committee • Staff support to members on Board • Conduct annual member satisfaction survey

29. Member Education • Editor of Member Newsletter • Monitor Member listserv • Monitor and update website • Develop, review and maintain member handbook, and other documents for members • Conduct educational seminars for member families on topics related to CSHCN • Assure that member ed methods and tools promote and support family centered, culturally competent practice

30. Member Outreach • Community Forums • Family Groups with Title V Parent Participation Program • Member marketing materials development and maintenance • Link with existing family groups and organizations; Family Voices, Arc Michigan, CAUSE

31. Provider Education • Review All Provider Ed materials • Contribute to provider education materials regarding Family-Centered, Community Based, Culturally Competent Coordinated Care, and Medical Home.

32. Non-medical resources and supports • Monitor and disseminate community resource guide • Develop guidance material on steps to access community based supports such as respite, waivers, special education services, etc • Research and disseminate information to local care coordinators on non-medical supports for CSHCN • Assist families in obtaining medically necessary services that are not covered benefits

33. National, State and Community Relationships • Participate in local initiatives for CSHCN i.e.; CHM Parent Professional Advisory Committee • Participate in state level initiatives for CSHCN, i.e.; CSHCS Advisory Committee, Michigan Family Voices, Michigan Hospice and Palliative Care • Participate in national initiatives for CSHCN, i.e.; Family Voices, American Academy of Pediatrics Committee on Children with Disabilities, National Center on Financing for CSHCN, etc.

34. Special Projects • Identify areas of need for special projects • Medical Home • Transition • Identify funding sources for special projects • Develop and submit grant proposals

35. For more information Go to: www.childrenschoicemi.com or Call: 1-800-566-1110

36. Family Partnerships:The Maryland Family Access Project Grace Pushparany Williams

38. Partners • Office of Genetics and CSHCN – Title V • Office of Health Services – Medicaid • Maryland Physicians Care –MCO • AG’s Health Education & Advocacy Unit • American Academy of Pediatrics – MD Chapter

39. Trainees • Nine parents of children with SHCN • Geographically distributed across state • Three placed with partner one day per week • All work in community • Ongoing training

40. Parent Training • On-site training once per month • Monthly conference calls • Weekly homework • Active listserv • Shared experiences • Partners train • Parents become trainers

41. Initial Placements • Medicaid • Health Education and Advocacy Unit • Maryland Physicians Care

42. Medicaid • Orientation to all divisions/activities • Special Needs Advisory Committee • Communication/EPSDT subcommittees • MCO enrollment cards • Review material from parent perspective • Policy formation • Develop own project

43. Health Education & Advocacy • Orientation • Private insurance • Consumer Hotline • Over 2000 complaints annually • Mediation/arbitration

44. Maryland Physicians Care • Resource for MPC parents • Family Outreach for members with SHCN • Participate in CSHCN team meetings • Attend Consumer Advisory Board (CAB) meetings • In-service to case managers & CAB • Develop managed care primer for parents

45. Other Activities • Survey of Pediatricians • Place in community pediatricians offices • Advise parents on managed care issues • Training for families in navigating health plan & advocacy for change • Additional community contacts • Evaluation & data collection

47. Questions and Answers Division of Services for Children with Special Health Care Needs,Maternal and Child Health Bureau