The Medical Home in Practice

1. The Medical Homein Practice Rural Community-Based And Tertiary Care Center Models

2. CHILDREN’S HOSPITAL OF WISCONSIN (CHW) SPECIAL NEEDS PROGRAM A PRIMARY CARE/ TERTIARY CARE MEDICAL HOME PARTNERSHIP Holly Colby, RN, MS

3. EVOLUTION OF THE SPECIAL NEEDS PROGRAM (SNP) • In 1998 the SNP was developed from a contract with WI Medicaid for case management services. • Physician joined the program in January 2003 as Medical Director and Care Coordinator • Development of physician care coordination in collaboration with nurse case manager (CM) for high intensity/medically fragile children

4. Special Needs Program Goals • Provide exceptional care coordination services • Advocate for improved care coordination for all children with special health care needs (CSHCN) • Educate and assist other providers and programs in providing care coordination services for their patients Medically Fragile children require a Medical Home to promote safe, coordinated care to optimize clinical and related outcomes and decrease parental stress

5. What do Families Say They Want • People (doctors, nurses, therapist, et al) who help them negotiate the medical and non-medical maze of services

6. OUR VISION Care coordination at Children’s Hospital of Wisconsin will: • Facilitate high quality, comprehensive, cost effective care

7. VISION • Promote optimal quality of life for children and families • Meet and exceed the expectations of all customers

8. Children’s Hospital of Wisconsin SNP Description • In 2003-116 children in SNP with an average of 7 physicians and mean hospital charges of $157,576/yr • Target population: • 974 patients had 3 major specialists and mean charges of $27,860/yr. • 193 patients had 5 or more specialists and mean charges of $83,940/yr. • SNP staff: 3 Nurse Case Managers, 1 part-time Clinical Nurse Specialist, 2 part-time physicians, program manager and part-time administrative assistant

9. Family desires to work with Case Manager (CM). Program is voluntary. Highly complex medical condition At least five sub-specialists Multiple and/or uncertain diagnoses Patient is not already followed by a CM Criteria for SNP enrollment

10. Medical condition requires frequent care and monitoring Periods of medical instability Socially complex situation PCP requests care coordination assistance Criteria for SNP enrollment

11. REFERRAL SOURCES 2003 • Specialty physicians at CHW-23% • Population-specific programs at CHW-17% • Inpatient Case Managers-12% • Parents/Guardians-7% • Primary Care Physicians-5% • Birth to Three Programs-5% • Others (Schools, Social Workers, Dieticians, Health Departments, Family Centers)-26% • 149 referrals in 2003 (66 enrolled)

12. INTAKE PROCESS • Weekly intake rounds attended by SNP team, Social Work, Rehab Physician, and a staff member of the Special Needs Family Center • Referrals reviewed using established program criteria • Recommendations made re: who or what program can best meet patient/family needs • Acuity determined using SNP Intensity Scoring tool to predict CM effort/patient • Communication with PCP, family and referral source re: team recommendation

13. THE SCOPE OF SNP CARE COORDINATION SERVICES • Case plans and clinical summaries • Communication link between families, PCP, sub-specialists, and other providers • Facilitate and coordinate health care delivery, appointments, care conferences, referrals • Attend IEPs, clinic appointments, home visits

14. SCOPE OF CARE • Provide psychosocial support and advocacy • Provide health and resource information • Average case loads: 25-30 complex CSHCN

15. TO FAMILIES Assists with establishing a plan of care Facilitates communication between providers Coordinates appointments Provides a single point of contact Facilitates access to community resources To PCP Initiates a clinical summary Keeps PCP in the loop Facilitates communication with specialists One-stop shopping (call CM for appointments, results, etc) Comment from a PCP: “You’ve made it so much easier to follow my patients” BENEFITS OF SPECIAL NEEDS PROGRAM

16. Patient/family satisfaction (Ireys and Perry) Cost and reimbursement data evaluated Anecdotal feedback from primary care physicians and other providers Outcomes including Quality of Life, Functional Status, and resource utilization will be measured PROGRAM EVALUATION

17. Patient Satisfaction Survey 2003 • Results • Coordinating care: 8% very good, 80% excellent • Referring to other specialties: 12 % very good, 78% Excellent • Communication with professionals: 12% very good, 78% Excellent Parent comments: “CM services have been the greatest plus that has ever happened to us“ “The CM has been a wonderful asset to our family and has taken much of the stress out of our child’s health care” “Our CM saves me so much time and reduces my stress level greatly. I can be mom, not her nurse and case manager too”

18. REIMBURSEMENT STRATEGIES • WI Medicaid program: targeted case management • Commercial Payers for nurse case management • Physician billing for care coordination • Other grants and funding

19. ISSUES/CHALLENGES • Funding for care coordination services • Increasing demand for case managers • Limited capacity for current staff to increase caseloads • Inadequate reimbursement adversely affects ability to add more case managers to program

20. FUTURE DIRECTIONS OF THE SNP PROGRAM • Prove to payers and administrators that care coordination of CSHCN makes a difference-MEASURE PERTINENT OUTCOMES! • Validate intensity/acuity scoring tool • Refine identification of the target population • Perform needs assessment of families of CSHCN, PCPs, and sub-specialists • Seek funding opportunities for continuing program development and outcomes studies • Spread Medical Home partnerships in WI • Continue collaboration with the resident teaching program

21. The SNP is considered by families, physicians, and other healthcare professionals to provide optimal care for medically fragile children. The SNP is uniquely able to work with families and the PCP to improve quality of care, eliminate inefficiencies, and improve family satisfaction. One parent comments: “The CM has been a life-saving asset to our family, our sanity and our child’s medical team.” SUMMARY

22. TogetherEveryone AchievesMore A Children with Special Health Care Needs rotation for third year (PL-3) Residents at Children’s Hospital of Wisconsin Anne K. Juhlmann RN, BSN

23. BACKGROUND • Children with special health care needs (CSHCN) make up 15-18% of the U.S. pediatric population • Special health care needs impact development, function, and well-being of children, families and communities. • Pediatricians are expected to successfully serve the growing population of CSHCN and their families.

24. BACKGROUND “Is there nothing that medical faculty …can do to stay in more open, feeling contact with their own humanity and that of their patient? Renée Fox

25. REALITY Greater than 70% of practicing pediatricians report feeling unprepared to provide care to CSHCN and their families.

26. REALITY: The typical Pediatric Residency does not focus on how to provide a medical home to CSHCN and families. Vision: Every child deserves a medical home and by 2010 every child will have one. EDUCATION The bridge between vision and provision

27. OVERALL GOAL • Improve health care for CSHCN by developing a CSHCN rotation for third year Pediatric Resident that is fun, practical and focuses on: • The impact of chronic disease and disability on the child, family, community, and health care providers. • The importance of providing medical homes for these children and their families.

28. INTENTION OF ROTATION • Give residents the opportunity to appreciate the challenges, rewards, needs, beliefs, hopes and perspectives of families of CSHCN • Teach residents that serving CSHCN and their families requires a TEAM approach utilizing community, primary and tertiary care providers and resources.

29. INTENTION OF ROTATION • Teach residents about the potential benefits, challenges and opportunities inherent in providing medical homes for CSHCN. • Provide residents with practical approaches to caring for CSHCN and their families.

30. Description of CSHCN Rotation • In Jan. 2003 the Children with Special Health Care Needs Rotation was added to the curriculum’s required third year Behavior and Development Rotation. • Residents participate in approximately 14 half day experiences in hospital, outpatient clinic and community settings. • Teachers are physicians, nurses, physical, occupational and speech therapists, community providers and most importantly - families

31. THE FOCUS All experiences focus on the IMPACT of special health care needs on children, their families and the community AND the need for an interdisciplinary TEAM approach to caring for CSHCN.

32. FOCUS OFCARE COORDINATION EXERCISES and TEAM MEETINGS How to prepare clinical summaries and strategies for providing care coordination to CSHCN Identifying and mobilizing resources for CSHCN and families. “It seems so many things get missed when no one is coordinating care” “I plan to start clinical summaries for the CSHCN in my practice. What an asset to families & providers!”

33. FOCUS OF HOME PROVIDER EXPERIENCES Durable Medical Equipment (DME) Provider: The expertise and activities of DME Providers. Home Care Agency: The pivotal role of home care providers and how pediatricians can help them serve CSHCN. “I never knew how much preparation went into even a single day at home for a single complex patient!” Sam Juhlmann “It made me realize that there are many more people behind the scenes that help me to care for a CSHCN.”

34. FOCUS OF FAMILY HOME VISIT The focus is on daily life for the child and the family and the family’s ability to find quality of life despite their many challenges. “I was inspired to become the physician they spoke so highly of.” “After two hours I was exhausted – mentally and emotionally. It is hard to imagine living with the daily routines this family has established.” “The positive attitudes of parents is a true inspiration!”

35. FOCUS OF FAMILY HOME VISIT How kids can be kids and families can be families despite special health care needs. “This mom helped me to understand that she still has hopes and dreams for her child to lead the best life that she can. Isn’t that really the hope that all parents have for their children? This was my best experience to truly understand a CSHCN!

36. FOCUS OF OUTPATIENT CLINIC EXPERIENCES Cerebral Palsy, Muscular Dystrophy, Spina Bifida, Palliative Care, Tracheostomy/Ventilator • Impact of pediatric disorders and technology on CSHCN and their families. • Importance of home nurses in the lives of these children and families. “Functionality is really what families care about and want to talk about. Something most doctors do not consider”

37. FOCUS OF SEATING & EQUIPMENT CLINIC Improving mobility and quality of life for children who require custom wheelchairs and adaptive equipment. “It is crucial to maximize the mobility of the family rather than just the mobility of the child.“

38. FOCUS OF PHYSICAL, OCCUPATIONAL AND SPEECH THERAPY SESSIONS. The impact of developmental delays on the child, family and community. When and how to request, monitor and advocate for various types of therapeutic intervention. “therapy does not just end in clinic but is a way of life at home. “

39. FOCUS OF SCHOOL VISIT Needs, challenges, barriers and opportunities for CSHCN in school. How physicians can support and advocate for accessible, individualized and appropriate education.

40. FOCUS OF CSHCN REGIONAL CENTERS IN WISCONSIN The crucial role of community and statewide resources for CSHCN and families. “”As a physician I can advocate for more resources” “People who know resources are a substantial and invaluable resource.” “Families are a great support for each other!”

41. ASSESSING RESIDENT LEARNING

42. ASSESSING RESIDENT LEARNING

43. ASSESSING RESIDENT LEARNING THROUGH DAILY JOURNAL ENTIRES Residents were required to record their thoughts and reflections upon completion of each of their experiences. “Reflective writing enables doctors to examine their practice critically from a wide perspective, and to increase their understanding and empathy.” “Writing keeps us alert, alive and flexible. It keeps us questioning: questioning medical practice, our patients and ourselves.” Gillie Bolton

44. ASSESSING RESIDENT LEARNING THROUGH FORMAL PRESENTATIONS All residents prepared a formal presentation at the end of his/her rotation that focused on the challenges faced by families caring for CSHCN, the benefits of a medical home and how they will deal with the barriers to implementing a medical home for CSHCN in their practice.

45. FAMILY (TEACHER) VIEWS “Talking with the resident made me feel like all of our experiences could be used to help the resident be a better doctor for other children and families like ours.” “I was touched at the resident’s genuine amazement at all we do. It made me feel like she was beginning to get it.”

46. FAMILY (TEACHER) VIEWS “The resident said, ‘I never knew how much fun your child had at home. I used to wonder why you continued to care for him. Now I know why.” The resident shared some of the feelings she had as an intern caring for my child. I shared my sense feelings during hospitalizations. I felt as if we began to build a bridge of understanding tonight.”

48. SUMMARY and CONCLUSIONS • Good time to do it • The right amount of time • The residents take it seriously

49. Without a medical home a child’s life may easily become overshadowed or even defined by their special health care need.

50. Every Child Deserves A Medical Home!