IMPROVING THE SYSTEM OF SERVICES FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS

1. IMPROVING THE SYSTEM OF SERVICES FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS REGION VIII

2. LEARNING OBJECTIVES • To understand the population of children/youth with special health care needs • To understand the system of services that families need • Assess Title V’s role in promoting/facilitating this system • How have other states worked to improve the system • Resources to support system improvement

3. Who Are Children and Youth with Special Health Care Needs?

4. WHY DOES THE DEFINITION MATTER? • Estimate resources and personnel requirements • Define population for needs assessment • Identify research needs • Evaluate services • Define a social agenda

5. Different people have different ways to define these children and youth Diagnostic : Presence of a specific disease or condition ( e.g. at birth such as spina bifida or acquired like cancer) Disability of Functional Impairment: a condition that restricts every day activities (e.g. deafness or wheelchair bound) Developmental: Delays in certain childhood developmental milestones (e.g. learning disabilities) Cost: Medical care costs that exceed a certain amount (in a health plan) Chronic Illness: A condition that lasts at least 12 months Eligibility : For specific programs like foster care, supplemental security income (SSI)

6. LEGISLATIVE DEFINITIONS AMERICANS FOR DISABILITIES ACT (ADA): physical or mental impairment that substantially limits 1 or more life activities SUPPLEMENTAL SECURITY INCOME (SSI): medically determinable physical or mental impairment with functional limitations expected to last no less than 12 months INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA) : Categories of disabilities (e.g. autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment) 

7. MCHB DEFINITION Developed by group of experts Endorsed by American Academy of Pediatrics Children who have, or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and require health & related services beyond required by children

8. 2010/11

9. WHAT ARE THE PROGRAMS THAT SERVE CYSHCN? • Federal vs state vs local • Education (especially special ed) • Social services (e.g. foster care) • Recreation • Health care • Insurance plans • Mental health/behavioral health • Juvenile Justice • Vocational Rehabilitation

10. WHAT IS TITLE V’S ROLE? APPLYING A PUBLIC HEALTH APPROACH TO THIS POPULATION

12. Legislative Authority Omnibus Budget Reconciliation Act of 1989 (OBRA 89)– established the MCHB’s authority to: “Facilitate the development of community-based systems of services for CYSHCN and their families”; and “Promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for CYSHCN and their families.

13. Healthy People 2010 and 2020 Surgeon General Healthy People 2010 and 2020: Increase the proportion of States and territories that have service systems for CYSHCN; Increase the proportion of CYSHCN who have access to a medical home; Increase the proportion of YSHCN whose health care provider has discussed transition planning from pediatric to adult health care; Reduce the proportion of people with disabilities who encounter barriers to participating in home, school, work, or community activities.

14. A Public Health Approach Categorizing children by diagnosis led to a proliferation of disease specific “systems” – disease “silos”; Service needs are not limited to children with specific diagnoses -all CYSHCN have elevated service needs beyond those of the “average” child; Shifts the focus from diagnosis to a focus on addressing those systemic issues that affect all CYSHCN regardless of diagnosis. Families – no matter what the diagnosis- face barriers to accessing services and navigating systems and multiple providers

15. What Do Families Want? Access to a medical home; Family partnership in decision-making; Early and continuous screening; Adequate financing for needed services; Services organized for easy use; Transition to adult health care. THE SIX NATIONAL PERFORMANCE MEASURES Risk and Protective Factors

16. Meeting the Goal: 2010 Status Access to a medical home; (43%) Family partnership in decision-making; (70%) Early and continuous screening; (79%) Adequate financing for needed services; (61%) Services organized for easy use; (65%) Transition to adult health care. (40%) CYSHCN for whom the system met all: (18%) BUT significant disparities exist across race, income and functional limitations.

17. What is an integrated system? “linkage of programs and activities to promote overall efficiency and effectiveness and achieve gains in population health.” Mutual Awareness Collaboration Isolation Merger Cooperation Partnership Institute of Medicine. Primary Care and Public Health Exploring Integration to Improve Population Health. 2012

18. IOM Report on Primary Care & Public Health: Principles of Integration • Shared goal of population health improvement; • Community engagement to define and address population health needs; • Aligned leadership; • Sustainability = establishment of a shared infrastructure and building for enduring value and impact; • Shared and collaborative use of data and analysis; • Integration can evolve Source:  IOM (Institute of Medicine). 2012. Primary Care and Public Health: Exploring Integration to Improve Population Health.Washington, DC: The National Academies Press.

19. What Does it Mean to Build an Integrated System? “building blocks do not alone constitute a system, any more than a pile of bricks constitutes a functioning building. It is the multiple relationships and interactions among the blocks—how one affects and influences the others, and is in turn affected by them—that convert these blocks into a system.” Source: Don de Savigny and Taghreed Adam (Eds). Systems thinking for health systems strengthening. Alliance for Health Policy and Systems Research, WHO, 2009.

20. Converting Blocks into a System The State Implementation Grants for Integrated System of Services (D70)

21. Foundation for System Change

22. State Implementation Grantees (D70s) Washington Maine Montana North Dakota Minnesota Oregon New Hampshire Wisconsin Vermont Idaho South Dakota New York Massachusetts Michigan Wyoming Rhode Island Pennsylvania Iowa Connecticut Nebraska Nevada Ohio New Jersey Utah Illinois West Virginia Indiana Delaware Colorado Kansas Missouri Maryland California Virginia Kentucky North Carolina Tennessee Oklahoma Arizona Arkansas New Mexico South Carolina Alabama Georgia Mississippi Texas Louisiana Florida District of Columbia N.N.* Alaska *Navajo Nation 2012 2014 2015 2008 2009 2011 Hawaii

23. Build, enhance, and maximize partnerships; Engage family and youth as partners; leaders, and agents of change; Use Continuous Quality Improvement (CQI); Use data to build capacity and measure impact; Provide technical assistance, resources, and support; Promote policy and legislative changes. Strategies for Systems Integration

24. Colorado: Serving One Section vs the Entire Stadium

25. Minnesota: Sustaining System Change Through Legislation • Over 7,500 CSHCN identified by teams; • 1,200 care plans were written • Top 3 areas of QI: delivery system design, care partnership support, and clinical information systems; • Analysis of claims data for 500 children in 9 medical home practices: • ER visits & inpatient admissions decreased; • Dental & well child visits increased. 36 teams from medical practices participated in 6 Medical Home Learning Collaboratives using PDSA cycles. Work resulted in funding to continue and expand Medical Home Learning Collaborative;  MN Health Care Home legislation passed in 2008.

26. Utah: Integrated Services through QI • Utah Pediatric Partnership to Improve Healthcare Quality (UPIQ) Learning Collaborative to spread medical home as a practice standard • Utilized multiple methods • 5 Sessions followed by site visits to practices • Emails, monthly conference calls and weekly “resource news” • Data including Medical Home Index (MHI), Medical Home Family Index (MHFI), Chart Reviews, Medical Home Provider & Transition Surveys • Spread this model to autism Successful elements of the UISP project were continued, including medical home portal (www.medhomeportal.org) which is key component of CHIPRA quality demonstration project and is being spread to other states

27. Making a Difference “This grant has been “essential” and made a huge difference to Title V as we moved away from direct clinical services to care coordination in the New Orleans region. The grant came just at the right time and is “filling the gap” by expanding the Family Resource Center (FRC) to help families navigate the system.” -- Susan Berry, Medical Director, LA Title V, 2012

28. A tool developed by Title V Leaders Involved in the Learning Collaboratives • Assesses progress toward becoming a quality improvement organization • Guides development of a state system capable of creating and sustaining integrated systems of care for CYSHN • Prompts reflection and examination of program strengths and weaknesses • Helps Title V programs identify and implement improvement strategies Title V Index

29. TITLE V INDEX: DOMAINS AND INDICATORS • Strategic leadership • Partnerships across public and private sectors • Quality Improvement • Use of available resources • Coordination of service delivery • Data Infrastructure Preparation Preliminary action steps Implementation Mastery Sustainability

30. CSHCN LEADERSHIP DOCUMENT • Specific skills & content knowledge required of CSHCN Leaders • Based on MCH Leadership Competencies & Title V Index • Six attributes: Overall Leadership; Quality Improvement; Use of Resources; Service and Coordination; Partnership; Data Infrastructure • Discussion: Does this reflect your role in your state?

31. NATIONAL CENTERS National Center for Family Professional Partnership: www.fv-ncfpp.org National Center for Cultural Competence: http://nccc.georgetown.edu The Catalyst Center for Improving Financing: www.hdwg.org/catalyst The National Center of Medical Home Initiatives: www.medicalhomeinfo.org National Center for Hearing Assessment and Management: www.infanthearing.org National Center for Community Based Services: www.communitybasedservices.org Got Transition: www.gottransition.org

32. OTHER SYSTEM RESOURCES • Data Resource Center for Child & Adolescent Health: www.childhealthdata.org • AMCHP:www.amchp.org • Models of Care for Children and Youth with Special Health Care Needs • Champions for Inclusive Communities: http://www.eiri.usu.edu/projects/champions • Defining a System of Care – multi-media presentation • A State-Level Tool Kit for Building a Community-Based Service System • JSI Project Spaces www.projectspaces.jsi.com • D70 state resources • E-mail to hilary_segar@jsi.com

33. QUESTIONS?? Lynda Honberg Lhonberg@hrsa.gov 301-443-6314 Kathy Watters Kwatters@hrsa.gov 301-443-0272