1. Parent Professional Partnership Assuring an Integrated System of Care for CSHCN

2. Deborah Garneau, OSHCN Director RI Department of Health Lisa Schaffran, Associate Director RI Parent Information Network

3. Parent Professional Partnerships at Work

4. Health Care in Rhode Island Universal Newborn Screening Hospitals and Specialty Services Comprehensive Medicaid Program 3 Major Health Plans RIte Care/RIte Share

5. Parent Professional Partnerships at Work Health Care in Rhode Island High Rates of Insured Children Medical Home Model Medical Care for CSHCNs CEDARR Family Centers

6. Parent Professional Partnerships at Work The RI you may not know… 6 th highest prevalence of CSHCN –Early Intervention and Special Education Facing a budget deficit of $500 Million Immigration Languages

7. Parent Professional Partnerships at Work Needs Assessment Physician and Family Concerns Disconnect between health care and community social services Difficult to navigate community-based service and support systems

8. Parent Professional Partnerships at Work State Partners Pilot Program to Bridge the Gap Development of a model to bridge the physician practices & community programs & resources Provides parent consultant services to primary and specialty care physicians dedicated to serving CSHCNs and their families PPEP model was established – Pilot implemented

9. Parent Professional Partnerships at Work

10. Department of HEALTH Title V Special Needs Office Quality Assurance Initiatives Valuing Parents as Partners Natural Development of Model

11. Parent Professional Partnerships at Work What is the PPEP? Medical Home project that provides enhancement services in a high quality and cost effective manner Family centered approach to health care Collaborative care that depends on all partners for success THE PARTNERS

12. Parent Professional Partnerships at Work The Rhode Island Partners Department of Health- OSHCN Department of Human Services Rhode Island Parent Information Network Neighborhood Health Plan of RI Family Voices of RI Hasbro Children’s Hospital American Academy of Pediatrics All Participating Sites

13. Parent Professional Partnerships at Work Department of HEALTH Administer the PPEP Financial Management Physician / Practice Correspondence Data and Evaluation

14. Parent Professional Partnerships at Work

15. Rhode Island Parent Information Network (RIPIN) Founded in 1991 Statewide, 501(c)(3), charitable, nonprofit organization with a collective programmatic reach that extends to every Rhode Island community, the state’s major family- serving systems, schools, associations, and agencies Serves more than 20,000 families each year

16. Parent Professional Partnerships at Work Rhode Island Parent Information Network (RIPIN) Mission RIPIN informs/educates, supports, and empowers ALL families to be equal partners in advocacy for the education, health, and socio-economic well being of their children and families….And Achieves family centered systems changes, which are culturally competent, and community based by partnering with, collaborating with, and educating key stakeholders.

17. Parent Professional Partnerships at Work Rhode Island Parent Information Network (RIPIN) Offers 11 programs and services to all families and professionals in RI Federally designated: PTIC, PIRC, and the Family to Family Health Information and Education Center Home to Family Voices of RI Provides Parent Consultant Services

18. Parent Professional Partnerships at Work Why this model of peer-to-peer support? Track record of success Commitment System navigation Networking RIPIN Connection Collaborating/Networking is the key to success!

19. Parent Professional Partnerships at Work Where do parents get their information? Sherlock Center on Disabilities – RIC Parents Face-to-Face and One-to-One Consistent Findings

20. Parent Professional Partnerships at Work Who are the Parent Consultants (PCs)? Parents and family members who have CSHCNs and individuals with SHCNs who have experience in navigating the complex systems of care in Rhode Island. This experience includes knowledge of resources: from information re: basic needs (food, shelter, clothing) to accessing the appropriate insurance plan or specialty evaluation.

21. Parent Professional Partnerships at Work RIPIN’s Role in PPEP Recruit Hire Train Development of training plan - Individual and Team Ongoing support and supervision Parent Consultant Activities

22. Parent Professional Partnerships at Work Participating Primary Care Sites 12 Primary Care Sites including: Hospital Based Primary Care Clinics Health Centers Private Physician Office Private Physician Group Practices Neo-natal Follow-Up Clinic

23. Parent Professional Partnerships at Work Participating Specialty Care Sites 13 Specialty Care Sites including: Hospital Based Multi-Disciplinary Evaluation Sites (2) Intensive Clinical Services: NICU, VIP, Rehabilitation Disability Specific Programs: Autism, Asthma Special Needs Dental Provider Special Intervention Teams: Housing, Behavioral Health, Women’s Prison, Prevent Child Abuse, Young Parents

24. Parent Professional Partnerships at Work How do we measure success? Individual Level Evaluation Demographics / General Information: Age, Diagnosis, Race, Ethnicity, # in Household, Problems Identified Process Measures: Activity Type, Activity Location, Activity Content, Time Spent Outcomes: Goal Achievement, CEDARR Referrals, Referrals Made & Type, Utilization Analysis

25. Parent Professional Partnerships at Work In 4 years: Served 1927 CYSHCN and their families Had 8,721 contacts with families Addressed 2,749 family concerns Assisted families in achieving 71% of concerns 25 Parent Consultants are currently working on 662 concerns

26. Parent Professional Partnerships at Work Categories of Concerns:  22% Education  19% Mental / Behavioral Health  17% Specialty Evaluation  9% Health Insurance  7% Recreation / Social  7% General Parenting  5% Housing  4% Food / Clothing  4% Nutrition  3% Medical Equipment  3% Child Care

27. Parent Professional Partnerships at Work How do we measure success ? Practice Level Evaluation Identification of CSHCNs within practice Track and monitor CSHCNs Practitioner productivity Comprehensive service delivery / provision

28. Parent Professional Partnerships at Work Practice Level Results: ↑Physician Productivity ↑Patient Satisfaction ↑Physician Satisfaction ↑Comprehensive Care ↑Knowledge of System ↓Family Wait Time ↑FAMILY CENTERED CARE

29. Parent Professional Partnerships at Work How do we measure success? System Level Evaluation Systems Barriers identified and worked on Integrated Service Delivery System for CSHCN and their families Practices Buying-In Recognition as a Reimbursable Service!

30. Parent Professional Partnerships at Work System Level Results CEDARR works better Reduce Wait Lists Increase in Family Education Identified Need for Coordinated Information INTEGRATED SYSTEM OF SERVICES

31. Parent Professional Partnerships at Work How do we measure success? Utilization Analysis NHPRI members seen in the PPEP practice sites Those members with a least a year’s worth of claims before and after entry into the PPEP Medical, pharmacy and behavior health services

32. Parent Professional Partnerships at Work Finding for Utilization Study Major reduction in Inpatient Utilization: > -56% (-65) Increase in Outpatient / Home & Community-based Services Major shift in Behavioral Health Services: 48% Increase in Outpatient Services 100% Decrease in Inpatient and Day/Night Services

33. Parent Professional Partnerships at Work Cost Analysis Over 57% of members had lower health care costs after becoming involved in PPEP Cost Decreases: Behavioral Health (Inpatient and Day/Night) Institutional (Hospital affiliated Services) Cost Increases: Professional & Pharmacy

34. Parent Professional Partnerships at Work Summary of Findings Decreased Costs Decreased utilization of Inpatient / More Intensive settings Increased utilization of Home & Community-Based services Increased Professional and Pharmacy

35. Parent Professional Partnerships at Work Family Outcomes Families report: greater understanding and satisfaction of care feel empowered increased knowledge of supports Family Success story

36. Parent Professional Partnerships at Work Challenges Sustainability Ensuring that Parent Consultants are well-informed of community resources; RIte Care benefits; available care management programs for Medical and Behavioral Health Developing linkages to critical health care and social services

37. Parent Professional Partnerships at Work Opportunities Enhanced reimbursement for the “Medical Home” On-going training of Parent Consultants Co-Location of behavioral health services in the medical practice Collaboration and partnerships with community-based health care and social services organizations Creating a similar model to support adults with disabilities Medical Home and Adolescent Transition

38. Parent Professional Partnerships at Work Interactive / Toolkits…. Developing / enhancing a parent information center in your state Forms, Surveys, Agreements & Data Reports – the How To’s of PPEP Policy directed by the community / consumer Promoting Adolescent Healthcare Transition in the Medical Home

39. Parent Professional Partnerships at Work Deborah Garneau Chief, OSHCN RI Department of Health 401.222.5929 Deborah.Garneau@health.ri.gov Lisa Schaffran Associate Director RI Parent Information Network 401.727.4144 x153 schaffran@ripin.org

40. …and we are making a difference.

41. Questions?