Building Systems of Care for Children and Youth with Behavioral H ealth Challenges

1. Building Systems of Care for Children and Youth with Behavioral Health Challenges Sheila A. Pires Senior Partner, Human Service Collaborative Core Partner, Technical Assistance Network for Children’s Behavioral Health Senior Consultant, Child Health Quality Programs Center for Health Care Strategies Illinois Children’s Services Workgroup July 10, 2014

2. System of Care Definition A broad, flexible array of effective services and supports for defined populations, which: • Is organized into a coordinated network; • Integrates care planning and care management across multiple levels; • Is culturally and linguistically competent; • Builds meaningful partnerships with families and youth at service delivery, management, and policy levels; • Has supportive management and policy infrastructure; and, • Is data-driven. Pires, S. (2010). Building systems of care: A primer, 2nd Edition. Washington, D.C.: Human Service Collaborative for Georgetown University National Technical Assistance Center for Children’s Mental Health.

3. System of care is, first and foremost, a set of values and principles that provides an organizing framework for systems reform on behalf of children, youth and families. Stroul, B. 2005. Georgetown University. Washington, D.C.

4. System of Care Core Values Pires, S. (2009) Building systems of care: A primer 2nd Ed.. & Primer Hands On (2012) Washington, D.C.: Human Service Collaborative.

5. Definition of Family Driven • Family-driven means families have a primary decision-making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This includes: • choosing culturally and linguistically competent supports, services, and providers • setting goals • designing, implementing, and evaluating programs • monitoring outcomes • partnering in funding decisions T. Osher, D. Osher and Blau, FFCMH and CMHS, SAMHSA.

6. Definition of Youth Guided “Youth Guided means to value youth as experts, respect their voice, and to treat them as equal partners in creating system change at the individual, state, and national level.” www.youthmovenational.org

7. National CLAS Standards • The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the National CLAS Standards) are intended to: • advance health equity • improve quality • help eliminate health care disparities • (2010) National CLAS Standards Enhancement Initiative launched to revise the Standards to reflect the past decade’s advancements, expand their scope, and improve their clarity to ensure understanding and implementation. Office of Minority Health. US Dept. of Health and Human Services: https://www.thinkculturalhealth.hhs.gov/pdfs/NationalCLASStandardsFactSheet.pdf

8. Historic/Current Systems Problems Pires, S. (1996). Human Service Collaborative, Washington, D.C.

9. Identified Needs in Illinois* • Additional care coordination across service systems • Reduce psychiatric hospitalization and residential placements • Reduce segregation of funding that results in fragmentation • Family-driven, youth-guided care • More flexible array of services • Culturally competent services • Maximize funding through blending, braiding, pooling funds • Transparency in utilization and cost data *Source: DHS: Pathways – Illinois’ Strategic Plan for Children’s Mental Health

10. Characteristics of Systems of Care as Systems Reform Initiatives FROM Fragmented service delivery Categorical programs/funding Limited services Reactive, crisis-oriented Focus on “deep end,” restrictive Children/youth out-of-home Centralized authority Foster “dependency” TO Coordinated service delivery Blended resources Comprehensive service array Focus on prevention/early intervention Least restrictive settings Children/youth within families Community-based ownership Build on strengths and resiliency Pires, S. (2010). Building systems of care: A primer, 2nd Edition. Washington, D.C.: Human Service Collaborative for Georgetown University National Technical Assistance Center for Children’s Mental Health.

11. Frontline Practice Shifts Control by professionals Partnerships with families/youth (I am in charge) (acknowledging a power imbalance) Only professional services Partnership between natural and professional supports/services Multiple case managers One service coordinator Multiple service plans Single, individualized child (meeting needs of agencies) and family plan (meeting needs of family) Family/youth blaming Family/youth partnerships Deficits focused Strengths focused Mono Cultural Cultural/linguistic competence Orrego, M. E. & Lazear, K. J. (1998) EQUIPO: Working as Partners to Strengthen Our Community and Conlan, L. Federation of Families for Children’s Mental Health

12. Examples of Family Members & Youth Shift in Roles and Expectations Lazear, K. & Conlon, L. (2004). “Primer Hands On” for Family Organizations. Human Service Collaborative: Washington, D.C.

13. System Change/Transformation Focus (e.g., financing; regulations; rates) (e.g., assessment; service planning; care management; services/supports provision) (e.g., data; quality improvement; human resource development; system organization) (e.g., partnerships with families and youth; natural helpers; community buy-in) Pires, S. (2002). Building systems of care: A primer. Washington, D.C.: Human Service Collaborative.

14. Categorical vs. Non-Categorical System Reforms Categorical System Reforms Non-Categorical Reforms Pires, S. (2001). Categorical vs. non-categorical system reforms. Washington, DC: Human Service Collaborative.

15. Illinois NB v. Hamos Population All Medicaid-eligible children under the age of 21 in the State of Illinois: (1) who have been diagnosed with a mental health or behavioral disorder; and (2) for whom a licensed practitioner of the healing arts has recommended intensive home-and community-based services to correct or ameliorate their disorders

16. Prevalence/Utilization Triangle More complex needs IntensiveServices – 60% of $$ Home & community services and supports; early intervent’n–35% of $$ 2 - 5% Prevention and Universal Health Promotion – 5% of $$ 15% Less complex needs 80% Pires, S. 2006. Human Service Collaborative. Washington, D.C.

17. Rosie D. Remedy - Massachusetts • Amended Medicaid State Plan to cover: • Intensive care coordination using wraparound • Family peer support • Intensive in-home services • Behavioral management therapy and monitoring • Therapeutic mentoring • Mobile crisis intervention…with • Service definitions tailored to children • Mandated screening by primary care providers for BH issues, use of standardized screens, higher rates, training • Care management entities for children with intensive needs • Common UM criteria across MCOs • Training and TA • Interagency governance through Children’s BH Initiative – Exec. Off. HHS

18. Children in Medicaid Using Behavioral Health Care Are an Expensive Population • Have mean Medicaid expenditures (physical and behavioral health care) of $8,520 per year – nearly 5x higher than for Medicaid children in general ($1,729 per year). • TANF children – nearly 3x higher • Foster care – 7x higher • SSI/Disabled – nearly 9x higher • Expenditures are driven more by behavioral health service use than by physical health service use, except for children on SSI/Disabled, for whom mean physical health expenditures are slightly higher. • 9.6 % of children using behavioral health care account for an estimated 38% of all spending in Medicaid for children Pires, SA, Grimes, KE, Allen, KD, Gilmer, T, Mahadevan, RM. 2013. Faces of Medicaid: Examining Children’s Behavioral Health Service Utilization and Expenditures. Center for Health Care Strategies: Hamilton, NJ

19. What Drives Medicaid Costs (and often poor outcomes) for Children with Behavioral Health Challenges? • Use of Residential Treatment, Psychiatric Inpatient (& Day Treatment) • Use of traditional outpatient therapies • “Based on current evidence of the effectiveness of interventions • in community mental health settings, there is no reason to assume • that the outpatient mental health services provided to foster children • are effective in improving outcome” (James, S., Landsverk, J., Slymen, D. and Leslie, L. • Predictors of Outpatient Mental Health Service Use—The Role of Foster Care Placement Change • Ment Health Serv Res. 2004 September; 6(3): 127–141) • “Results indicate that children who have experienced long-term foster care do not benefit from • the receipt of outpatient mental health services” (Bellamy, J., Gopala, G., Traube, D • A national study of the impact of outpatient mental health services for children in long-term foster care. • Clin Child Psycholog Psychiatry 2010 Oct;15(4):467-79) • Strategy: Effective home and community-based alternatives • and effective OP therapies – e.g. TF-CBT, FFT, PCIT Pires, S. 2013. Human Service Collaborative

20. What Drives Medicaid Costs (and often poor outcomes) for Children with Behavioral Health Challenges? • Inappropriate Use of Psychotropic Medications • Strategies: Red flag monitoring (too young, too many, too much) • and consultation to/education of prescribers as in OR and WY; • Psychiatric consultation to primary care docs as in MA (MCPAP); • Informed consent supported by access to psychiatric consultation • as in IL and VT • Duplication of Services (e.g., multiple assessments, • multiple care coordination) • Strategies: fidelity Wraparound approach with dedicated • care coordinator, low ratios; common screening/assessment tools Pires, S. 2013. Human Service Collaborative

21. Illinois Recommendations* • Focal point of management and accountability at the state level • Interagency structures to set policy • An individualized, wraparound approach • Family-driven, youth-guided services • Strong youth and family partnership (e.g., involvement in policy, • training, funding) • Reduce racial, ethnic and geographic disparities and • improve cultural and linguistic competence of services • Increase use of Medicaid • Maximize federal grants • Redeploy funds from higher cost to lower cost services • Ongoing training and t.a. capacity • Use data on outcomes and cost across systems • Cultivate partnerships with providers, MCOs, others *Source: DHS: Pathways – Illinois’ Strategic Plan for Children’s Mental Health

22. Larger Environment • Medicaid re-design: health reform, budget deficits, quality and efficiency • Renewed interest in managed care, including for populations with high use/cost (e.g., chronic conditions, foster care, SSI, SED) • Capitated PH/BH – “integrated” designs • Emphasis on integrated care- medical homes, health homes • Accountable Care Organization structures • Renewed interest in various waivers/options • 1115, 1915b, 1915i, Money Follows the Person, health homes • Child welfare reform; Juvenile Justice reform Pires, S. 2013. Washington DC: Human Service Collaborative

23. Integrated PH/BH at the Medicaid Purchaser Level Research has shown that… • When physical and behavioral health dollars are integrated within a capitated managed care environment, there is a risk of behavioral health dollars being absorbed by physical health services • When adult and child behavioral health dollars are integrated, there is a risk of child behavioral health dollars being absorbed by adult services Especially in the absence of customization within the design for children with serious BH challenges, risk-adjustment strategies, strong contractual performance measures and monitoring mechanisms See publications and issue briefs published by the Health Care Reform Tracking Project at: http://www.fmhi.usf.edu/cfs/stateandlocal/hctrking/hctrkprod.htm

24. Accountable Care Organizations • “I believe, with some exceptions, ACOs will not succeed…it will be difficult for anything but an organization that has been at it a long time to develop the team culture needed to be an ACO” • “The reason that patient-centered medical homes will not succeed is that health care follows the 80/20 rule - 20% of patients generate 80% of the costs. Those 20% are the chronically ill, and I don’t see how primary care physicians serving those patients add value to their care.” • “Focused factories of care – that is a term I use for provider organizations that deliver highly specialized care for a certain group of patients, such as those with diabetes…you need specialists for that. They are the opposite of ACOs that do everything for everyone.” --Regina Herzlinger, Harvard Business School, as quoted in Managed Care Magazine Online (http://www.managedcaremag.com) REALITY: Care coordination ratios within Medicaid ACOs- for the highest need- run 1:50-75. Pires, S. 2013. Washington DC: Human Service Collaborative

25. Analysis of Medical Home Services for Children with Behavioral Health Conditions “All behavioral health conditions except ADHD associated with difficulties accessing specialty care through medical home” “The data suggest that the reason why services received by children and youth with behavioral health conditions are not consistent with the medical home model has more to do with difficulty in accessing specialty care than with accessing quality primary care”. There is a need for more customized, intensive care coordination approaches for children with significant behavioral health challenges. Sheldrick, RC & Perrin, EC. “Medical home services for children with behavioral health conditions”. Journal of Developmental Pediatrics, 2010 Feb-Mar 31 (2) 92-9 Pires, S. 2013. Washington DC: Human Service Collaborative

26. Children and Youth with Serious Behavioral Health Conditions Are a Distinct Population from Adults with Serious and Persistent Mental Illness • Children with SED do not have the same high rates of co-morbid • physical health conditions as adults with SPMI • Children, for the most part, have different mental health diagnoses • from adults with SPMI (ADHD, Conduct Disorders, Anxiety; not so much • Schizophrenia, Psychosis, Bipolar as in adults), and diagnoses change often • Among children with serious behavioral health challenges, two- • thirds typically are involved with child welfare and/or juvenile justice systems • and 60% may be in special education – systems governed by legal mandates • Coordination with other children’s systems – child welfare, juvenile justice, • schools – and among behavioral health providers, as well as family issues, consumes most of • care coordinator’s time, not coordination with primary care • To improve cost and quality of care, focus must be on child and family/caregiver(s) – • takes time Pires, S. March 2013 Customizing Health Homes for Children with Serious Behavioral Health Challenges . Human Service Collaborative

27. Customized Intensive Care Coordination Approaches Are Needed • Neither traditional case management nor • care coordination approaches for adults are sufficient • Need lower case ratios • Need higher payment rates • Need approach based on evidence of effectiveness

28. Customized Care Coordination Approaches for Children with Serious Behavioral Health Challenges(May 7, 2013 CMCS Informational Bulletin) • Care Management Entities Organizations providing intensive care coordination at low ratios (1:10) using high quality Wraparound approach • High Quality Wraparound Teams Providing intensive care coordination at low ratios embedded in supportive organization, such as CMHC, FQHC or school-based mental health center Growing number of states – MA, LA, NJ, WI, IL; PRTF Waiver Demo states; CHIPRA Care Management Entity Quality Collaborative states – MD, GA, WY; OK – better outcomes, lower per capita costs, better family and youth experience with system – Triple Aim Pires, S. 2013. Washington DC: Human Service Collaborative

29. The Wraparound Process • Wraparound is a defined, team-based service planning and coordination process • The Wraparound process ensures that there is one coordinated plan of care and one care coordinator • Wraparound is not a service per se, it is a structured approach to service planning and care coordination • Focuses on the whole youth and family, on developing optimism, self-efficacy and enduring social supports • Goals are to improve outcomes and youth/family satisfaction and reduce per capita costs of care National Wraparound Initiative at nwi.org

30. Role of the Family or Youth Partner • A peer with lived experience • Assist the family/youth to help them engage and actively participate on the team, and make informed decisions that drive the process. • Peer-to-Peer Support • Advocate • Cultural Broker • (National Wraparound Initiative – Resource Guide to Wraparound ) Penn, M. 2010 Pre-Institutes Training Program, National Technical Assistance Center for Children’s Mental Health, Georgetown University Center for Child and Human Development

31. Wraparound is Increasingly Considered “Evidence-Based” • State of Oregon Inventory of Evidence-Based Practices (EBPs) • California Clearinghouse for Effective Child Welfare Practices • Washington Institute for Public Policy: “Full fidelity wraparound” is a research-based practice

32. Examples of Populations Served • Children in, at risk, for residential treatment, group care • Children in, at risk for detention • Children in, at risk for inpatient psychiatric hospitalization • Children in, at risk for alternative schools • Children staying too long in therapeutic foster care • Children with multiple placement disruptions States use standardized screening tools (e.g., CANS, CASII) and administrative data (e.g., Medicaid claims) to identify children with intensive BH needs

33. Creating “Win-Win” Scenarios Child Welfare Alternative to out-of-home care high costs/poor outcomes Medicaid Alternative to IP/ER-high cost System of Care ICC/Wrap Alternative to detention-high cost/poor outcomes Alternative to out-of-school placements – high cost Juvenile Justice Special Education Pires, S. (2006). Primer Hands On – Child Welfare. Washington, D.C.: Human Service Collaborative.

34. Care Management Entity Functions Pires, S. 2010. Care Management Entities: A primer. Center for Health Care Strategies, Inc.

35. “Integration” with Primary Care in a Wraparound Approach For children with complex behavioral health challenges enrolled in Health Home, Care Management Entity or Wraparound, the Health Team is responsible for: • Ensuring child has an identified primary care provider (PCP) • Tracking of whether child receives EPSDT screens on schedule • Ensuring child has at least an annual well-child visit • Communicating with PCP opportunity to participate in child and family team and ensuring PCP has child’s plan of care and is informed of changes • Ensures PCP has information about child’s psychotropic medication and that PCP monitors for metabolic issues such as obesity and diabetes Pires, S. 2013. Customizing Health Homes for Children with Serious Behavioral Health Challenges. Hamilton, NJ; Center for Health Care Strategies

36. Wraparound Milwaukee (1915 a) Mobile Response & Stabilization co-funded by schools, child welfare, Medicaid & mental health CHILD WELFARE Funds thru Case Rate (Budget for Institutional Care for Children-CHIPS) JUVENILE JUSTICE (Funds budgeted for Residential Treatment for Youth w/delinquency) MEDICAID CAPITATION ($1557 per month per enrollee) • MENTAL HEALTH • Crisis Billing • Block Grant • HMO Commercial Insurance 11.0M 11.5M 16.0M 8.5M SCHOOLS youth at risk for alternative placements Wraparound Milwaukee Care Management Organization $47M Families United $440,000 Per Participant Case Rates from CW ,JJ and ED range from about $2000 pcpm to $4300 pcpm Provider Network 210 Providers 70 Services Intensive Care Coordination Child and Family Team All inclusive rate (services, supports, placements, care coordination, family support) of $3700 pcpm; care coordination portion is about $780 pcpm Plan of Care • Use CANS Wraparound Milwaukee. (2010). What are the pooled funds? Milwaukee, WI: Milwaukee Count Mental Health Division, Child and Adolescent Services Branch.

37. New Jersey (1115) BH, CW, MA $$ - Single Payor Dept. of Human Services Division of Medical Assistance and Health Services (Medicaid) Department of Children and Families Division of Children's System of Care (CSOC) UMDNJ Training & TA Institute Contracted Systems Administrator-PerformCare – ASO for child BH carve out • 1-800 number • Screening • Utilization management • Outcomes tracking Provider Network Mobile Response & Stabilization Services Family Support Organizations *Care Management Entities- CMOs Medicaid and DCF-certified providers • Use CANS Family peer support, education and advocacy Youth movement Lead non profit agencies managing children with serious challenges, multisystem involvement *Care coordination rate of $1034 pcpm Adapted from State of New Jersey 2010

38. Massachusetts(1115 Waiver) State Medicaid Agency - Purchaser MCO MCO MCO MCO PCCM BHO Standardized tools for screening and assessment *Locally-Based Care Management Agencies (called Community Services Agencies) – Non Profit Specialty Organizations • Ensure Child & Family Team Plan of Care • Ensure Intensive Care Coordination • Link to peer supports and natural helpers • Manage utilization , quality and outcomes at service level *Care Coordination Rate: Massachusetts does not use a PMPM rate. However, for comparative purposes , (if assuming a productivity standard of approximately 26 hours a week, and an average caseload of 10), the 15-minute rate for Care Coordination and Family Support &Training may appear to suggest a PMPM of $1,100 - $1,200.

39. EX: Redirection and Braided Funds DAWN Project - Indianapolis, IN How Dawn Project is Funded Dawn Project Cost Allocation CFT and Care Coordination Structure RAINBOWS (Family Organization) 2005 CHIOCES, Inc., Indianapolis, IN

40. OUTCOMES • New Jersey estimates it has saved • over $30m in inpatient costs alone • over the past three years and reduced • residential treatment use by 15%. • Wraparound Maine experienced 30% reductions in Medicaid spending with increases in Targeted Case Management and in-home service expenditures and reduction in inpatient and residential expense (net overall 30% spending reduction). Pires, S. (2012). “Primer hands On” Washington, D.C.: Human Service Collaborative

41. OUTCOMES Milwaukee Wraparound • Reduction in placement disruption rate from 65% to 30% • School attendance for child welfare-involved children improved from 71% days attended to 86% days attended • 60% reduction in recidivism rates for delinquent youth from one year prior to enrollment to one year post enrollment • Decrease in average daily RTC population from 375 to 50 • Reduction in psychiatric inpatient days from 5,000 days to less than 200 days per year • Average monthly cost of $4,200 (compared to $7,200 for RTC, $6,000 for juvenile detention, $18,000 for psychiatric hospitalization) Milwaukee Wraparound. 2004. Milwaukee, WI.

42. OUTCOMES Family/Caregiver Experience Milwaukee Wraparound *Nearly half had previous CPS referral 91% felt they and their child were treated with respect (n=191) 91% felt staff were sensitive to their cultural, ethnic and religious needs (n=189) 72% felt there was an adequate crisis/safety plan in place (n=172) 64% reported Wrap Milwaukee empowered them to handle challenging situations in the future (n=188) Pires, S. (2006). Primer Hands On – Child Welfare. Washington, D.C.: Human Service Collaborative.

43. Potential for Care Management Entities in Georgia: Locus of Management Accountability for Children with Complex, Multisystem Needs Regional Care Management Entities DCH MCO MCO MCO DBHDD ASO DFCS • Ensure Child & Family Team Plan of Care • Ensure Intensive Care Coordination • Link to peer supports and natural helpers • Manage utilization , quality and outcomes at service level DJS DOE Use Same Decision Support Tool to determine need for CME Pires, S. 2008. Washington, D.C.: Human Service Collaborative

44. Implications for How RTCs are Utilized • Movement away from “placement” orientation and long lengths of stay • Residential as part of an integrated continuum, connected to community • Shared decision making with families/youth and other providers and agencies • Individualized treatment approaches through a child and family team process • Trauma-informed care For more information, go to Building Bridges Initiative: www.buildingbridges4youth.org Data Trends #127, February 2006,University of South Florida.

45. CMS/SAMHSA Informational Bulletin

46. Benefit Design

47. Other Home- and Community-Based Services • States have also developed service definitions for a variety of additional home and community-based services • Can be provided through State Plan Amendment, 1915(c) waivers and the 1915(i) program Additional Services • Therapeutic mentoring • Supported employment for older youth • Mental health consultation services • Telehealth

48. Example: Broad Service ArrayDawn Services & Supports 2005 CHIOCES, Inc., Indianapolis, IN

49. Services/Supports Array Focused on a Total Population Universal Targeted Core Services Prevention Early Intervention Intensive Services • Family Support Services • Youth Development Program/Activities • Coordinated Intake Assessment & Service Planning • Service Coordination • Intensive Care Management • Clinical Services • School Supports • School-Wide Climate Change Initiatives Pires, S. & Isaacs, M. (1996, May) Service delivery and systems reform. [Training module for Annie E. Casey Foundation Urban Mental Health Initiative Training of Trainer Is Conference]. Washington, DC: Human Service Collaborative.

50. Family & Youth Roles in System of Care Conlon, L. (2013) Primer Hands On” f Human Service Collaborative: Washington, D.C.