1. Building Strong Partnerships to Put the Puzzle Together Marianne Beach MEd. LCSW Sheila Rucki Ph.D APRN BC

2. Objectives Describe innovative strategies for meeting the needs of families with children with special health care needs. Discuss family centered care delivery initiatives that safely bridge families with community and heath care services. Discuss opportunities that maximize parent partnerships and actively build relationships between the tertiary care center, pediatric practices and Title V programs on behalf of children with special health care needs.

4. The Population of Interest  …the frequent flyers...  the complex, the challenging ... those who have  Chronic physical, developmental, behavioral, or emotional conditions  Who require health and related services of a type or amount beyond that required by children generally (USMCHB, 97) About 13% of all US children Account for 65-80% of pediatric health care expenditures

5. The Trajectory of Care Vulnerability Fixed deficits and progressive conditions Roles and relationships Family vs. system focused delivery models Creating and sustaining linkages Care coordination Transitions

6. Barriers to Partnerships  Differences among systems to access services and resources  Obligations for care transcend single episodes  No single point of entry  Separate criteria for eligibility  No single organization/ agency coordinated to provide requisite services  Inability to share financial or human resources across systems

7.  Fragmented and bounded systems of care  Systems of care and health care professionals that often are not linked  Different services required for different needs and ages  Different languages (professional, cultural)  Geographic location and transportation

8. Goals of Care – Child within the Family Unit To balance the child’s specific health care needs with the family’s other priorities –Minimizes the disruption for the child and family –Normalizes the care of the child within the family context –Maximizes the family’s ability to function –Build partnerships –Create capacity –Build collaboration opportunites

9. Crossing the Quality Chasm – A new health care system for the 21 st century “ The current care systems cannot do the job. Trying harder will not work. Changing systems of care will” “Improved performance will depend on new system designs.”

10. Unique Perspectives and Power Differentials The family’s view The health care system’s view The school system’s view The community ‘s view

11. Critical Interfaces Ongoing processes and structures for collaborative planning Financial support Support coordinated activities “People” support across systems Pre-service and in-service training Recognition of success

12. Family Centered Care Shifting orientation

13. Advantages of Community-Care for Families  Less disruption in family life, work, and school.  Family connected with community and natural support systems.  Service plans reflect family and community values.

14. Putting Partnerships to Work Benefits to Families Opportunities to share with other families Network with providers Expand knowledge Gain skills Benefits to Providers Increase knowledge of family needs Increase empathy and understanding about families Brings fresh perspective to the table

15. Opportunities  Reform existing services  Create access to services  Gain comfort with complexity  Create changes in the health care system  Redefine roles/relationships of providers

16. Outcomes of Partnerships  Promotes timely access to needed services at all levels  Promotes continuity of care.  Maximizes use of resources.  Improves quality of care and life.  Increases family satisfaction.  Increases care giver satisfaction

17.  Develops competence of families, adolescents and young adults  Enhances positive health, developmental, functional, cognitive, psychosocial, and behavioral outcomes  Creates system change for all

18. Medical Home Responsibilities of primary care provider:  Accessible  Family centered  Comprehensive  Continuous  Coordinated  Compassionate  Culturally competent

19. Medical Home is... The place where primary care is provided The process of care in that place The team of people including families and all office staff delivering primary care For all children/youth/adults A continuum of quality care Part of a community of resources About relationships...

20. How Does the Care Differ from the Care of Other Children? Requires more information about: –The family – attitudes, resources, capacity to care for the child, and priorities Family does most of the care and is in charge most of the time –Requires partnership Balance condition related needs with general well-being of child and family Involves many systems and people

21. Gains Professional-family PARTNERSHIP through a MEDICAL HOME OUTREACH to meet the family at the level at which they an use the service MULTIDISCIPLINARY TEAMS that COMMUNICATE honestly and effectively with one another and with the family EMPOWER FAMILIES to meet the needs of their children COORDINATION of care

22. Care Coordination Increased access to resources Increased use of available services Improved efficiency and effectiveness in service delivery. Family centered rather than service centered

23. Care Coordination Strategies  Key stakeholders become partners  Family determines service needs  Family & caretakers and community stakeholders establish partnerships.  Partnership is consistent, fluid and continuous.

24. Family Centered Partnerships Open sharing of information and concern Be available Help get information and answers to questions Become partners –Offer choices in treatments –Involve family in decision making –Develop family advocates

25. Rewards Share the joys of focusing on the child’s growth and development (accentuate the positive) Support and encourage the parents about what a good job they are doing under difficult circumstances Empower families to regain control of their lives Engage in authentic communication Support strengths of families

26. Our Partnerships in Action Parents Baystate Children’s Hospital MA Department of Public Health American International College State and Community Agencies Tufts’ University Residency program

27. Recent Initiatives Tufts’ residents Community Month- parents as teachers; home visits and yearly training series AIC nursing students community health rotation in families homes for 6 weeks Medical Home Center for Families activities and peer counseling Medical Home Grand Rounds with parents and pediatricians presenting together

29. …and More Medical Home Work Group monthly meetings Schwartz Rounds Statewide Consortium for CSHCN Annual Regional trainings with parent presentations Health Fairs

30. Our Hope Children with special health care needs will be able to experience the world through their eyes on their terms without limitations, contempt, ignorance, revulsion, disapproval, cruelty or condescension. They should guide the process so they are part of the family, the class, the school and the community

31. They are: They are the only limiting force and they will show us their potential

32. Children with Special Health Care Needs The decision is not about whether or not to become partners with care providers…it is about how good of a partner to become. We challenge you to become partners in this journey… The rewards are endless.