Transforming Mental Health Care: A Focus on the Schools Larke Nahme Huang, Ph.D. American Institutes for Research 9th Annual Conference on Advancing School-Based Mental Health Dallas, Texas October 8, 2004 President’s New Freedom Commission on Mental Health The Mission Conduct a comprehensive study of the U.S. mental health service delivery system and recommend improvements to the President. President’s New Freedom Commission on Mental Health Charge “ The Commission …shall…recommend improvements to enable adults with serious mental illnesses and children with severe emotional disturbances to live, work, learn, and participate fully in their communities.” About the Commission 15 Commissioners Public, private; payers, providers, consumers, family members, policy makers, researchers 7 Federal Ex officio members: Labor, Education, Veterans Affairs, HUD CMS, SAMHSA, NIMH, Monthly meetings Site Visits,Testimony and Town Hall meetings Research Review/Consultants Website Responses – content analysis 15 Subcommittees 15 Working Subcommittees Acute Care Children and Families Consumer Issues Co-occurring Disorders Criminal Justice Cultural Competence Employment & Income Support Evidence-based Practice & Medication Issues Housing and Homelessness Medicare/Medicaid Mental Health Interface with General Medicine Older Adults Rights and Engagement Rural Issues Suicide Prevention Analysis of Federal Funding Streams President’s New Freedom Commission on Mental Health Interim Report, October 2002 “The mental health delivery system is fragmented and in disarray – not from lack of commitment and skill of those who deliver care, but from underlying structural, financing, and organizational problems… The system’s failings lead to unnecessary and costly disability, homelessness, school failure, and incarceration.” Selected Findings: A Public Health Crisis in Mental Health 20% adults/children have a mental health problem ½ have a serious emotional disorder 20 million suffer from serious disabling mental illness Suicide: ~30,000 a year [80/day] ~40% had contact with primary care provider within the last month Adolescents 15-19y/o: 3rd leading cause of death; 17-19% think about killing themselves; 5-8% make attempt; only 1/3 get treatment YET, Only half of individuals with serious mental illness get treatment, services or supports Scope of MH Needs of Youth “By the year 2020, childhood neuropsychiatric disorders will rise by over 50% internationally to become one of the five most common causes of morbidity, mortality, and disability among children… no other illnesses damage so many children so seriously.” World Health Organization, 2002 Presenting Problems of Youth Admitted to MH Services: 1997 50% 46% 44% 41% 24% 20% 16% 16% 13% 11% Update, www.ihhcpar.rutgers.edu, 2002 Selected Findings for Children Of children with serious emotional/behavioral disorders: ~50% drop-out of high school (compared to 30% of students with other disabilities) (Dept of Education) Youth entering Juvenile Justice: ~66-75% have serious emotional problems (Coalition on Juvenile Justice; Teplin) ~500,000 children in foster care: estimates up to 85% have emotional/behavioral and/or substance abuse problem; 44% < 5 yrs old (The AFCARS Report: Preliminary FY 2001 Estimates as of March 2003. Washington, D.C., DHHS, 2003. ( latest federal statistics on foster care supplied by the states for the Adoption and Foster Care Analysis and Reporting System; Zero to Three) 1/3 children in mental health system have a cooccurring disorder (~age 11; ~age 17-18 SA) Disparities for Children of Diverse Racial and Ethnic Groups Black and Latino kids identified/referred at same rates as general population, but less likely to receive specialty mental health or meds (Kelleher, 2000) Minority children tend to receive mental health services through juvenile justice and child welfare systems more often than through schools or mental health setting (Alegria, 2000) African American and Latino children have highest rates of unmet need (Sturm, 2000) Asian American and Latino female teens have highest rates of depression (Commonwealth Fund, 1997) In child welfare, minority youth have poorer outcomes, fewer services, less likely to have plans for family contact and more likely to be in outof-home placements (Courtney et al, 1996). Rural Disparities Rates of mental disorders are similar between rural and urban youth, although limited sampling in rural America Exception: Rural adolescents have higher rate of suicide than urban counterparts Significantly higher rate among Native American youth Child poverty higher in rural areas; children of color atrisk with 46% African American, 43% Native American and 41% Hispanic rural children in poverty President’s New Freedom Commission on Mental Health Final Report Achieving the Promise: Transforming Mental Health Care in America “ We envision a future when everyone with a mental illness will recover, a future when mental illness can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any stage of life has access to effective treatment and supports-essentials for living, working, learning, and participating fully in the community.” Principles Underlying Transformation Services and treatments that – Are consumer and family-driven, not focused primarily on the demands of bureaucracies Provide real and meaningful choice of treatments, services and supports – and providers Engage consumers, families, youth Principles Underlying Transformation Care is focused on: Promoting consumers’ and family’s ability to manage life’s challenges successfully Facilitating recovery Building resilience, not just managing symptoms President’s New Freedom Commission on Mental Health Goals of a Transformed System: 1 2 3 4 5 6 Americans Understand that Mental Health is Essential to Overall Health Mental Health Care is Consumer and Family Driven Disparities in Mental Health Care are Eliminated Early Mental Health Screening, Assessment, and Referral to Services are Common Practice Excellent Mental Health Care is Delivered and Research is Accelerated Technology is Used to Access Mental Health Care and Information Transforming Concepts: Recovery and Resiliency “Consumers and families told the Commission that having hope and the opportunity to regain control of their lives was vital to their recovery. Indeed, emerging research has validated that hope and self-determination are important factors contributing to recovery” Metro Youth, Chicago: compelling testimony and survey data presented importance of youth voice. President’s New Freedom Commission Transforming Concept: Consumer & Family-Driven “…the effectiveness of services, no matter what they are, may hinge less on the particular type of service than on how, when, and why families or caregivers are engaged in the delivery of care…it is becoming increasingly clear that family engagement is a key component not only of participation in care, but also in the effective implementation of it” (Burns, Hoagwood, & Mrazek, 1999) “Not all the studies show that the improvements resulted from the intervention specifically. Family engagement may play a stronger role in outcomes than the actual intervention program” (Thomlison, 2003) Direct implications for schools: have the interventions, have the technology, but how do we ENGAGE students? So, what? How is the NFC relevant to what you do? How can you use the report? Is there a children’s goal? What will it take to transform mental health care for children and families? There is no single children’s goal or recommendation. Children’s issues embedded throughout. Recommendations with Implications for Children and Families 1.1- National anti-stigma campaign, and national strategy for suicide prevention 2.1- Individualized plans of care 2.2 -Consumers and families fully involved in orienting system toward recovery 2.3 -Align federal programs to improve access and accountability 2.4 -Comprehensive State Mental Health Plan 2.5 -Protect and enhance rights of people with mental illnesses Recommendations with Implications for Children and Families 3.1- Improve access to quality, culturally competent care 4.1- Promote mental health of young children 4.2- Improve and expand school mental health programs 4.3- Screen for co-occurring disorders, and link with integrated treatment 4.4- Screen in primary care, and connect to treatment and supports Recommendations with Implications for Children and Families 5.2- Advance evidence-based practice using dissemination & demonstration projects 5.3- Improve and expand workforce providing evidence-based services and supports 5.4- Develop knowledge base in four understudied areas (trauma, medications, disparities, acute) 6.2- Integrated electronic health record, and online personal health information systems/resources Is there a school-related goal? “The fundamental policy problem related to mental health in schools is that existing student support services and school health programs do not have high status in the educational hierarchy… schools and districts treat such activity, in policy and practice, as desirable but not a primary consideration… the programs and staff are marginalized… interventions are referred to as”auxiliary”… Student support personnel almost never a prominent part of a school’s organizational structure…deemed dispensable as budgets tighten.” Adelman & Taylor, Submitted to the NFC Goal 4/Rec 4.2 - Improve and Expand School Mental Health Programs Work with parents, local providers, local agencies to support screening, assessment and early intervention; Ensure that mental health services are part of school health centers Ensure that these services are federally funded as health, mental health and education programs Implement empirically supported prevention, early intervention approaches at the school district, local school, classroom, and individual student levels; Create State-level structure for school-based mental health services to provide state leadership and collaboration among education, general health, and mental health Key Learnings: Mental health consumers/ youth/families are not in the mental health system – de facto systems Stigma: key barrier to changing practice Gap between what we know works and what we practice. Places that have changed their systems: better outcomes and cost savings Mental health consumers/youth/families are not in the mental health system – de facto systems - schools Over 52 million children in ~ 100,000 schools in U.S.; 6 million adults working in the schools: 1/5 of U.S. population Children receive more MH services through schools than any other public system Student support services/school health programs need greater focus in health and education policy initiatives Must serve ALL children….. so they can learn in schools. Stigma: prevents accessing mental health Schools are accessible, familiar to families Stigma and school-comfort level variable among diverse groups Generally, stigma, non-compliance, inaccessibility lesser in schools Youth report: painful stigma in classroomprefer jj involvement, SA disorder rather than MH disorder Schools- pivot point to families, community stakeholders Gap between what we know works and what we practice. School MH programs decrease absence and discipline referrals, improve test scores (Jennings et al., 2000). School “connectedness” related to academic, behavioral and social success in schools (Blum & Hibbey, 2004). School-based wraparound decrease out-ofschool & out-of-home placements (Eber et al., 1996). Positive behavioral interventions and supports (PBIS- Horner & Carr, 1997; Sugai et al.2000) Promotion and Prevention Interventions Children and Families Issue Paper: Background Report Comprehensive overview of children’s issues; resources and rationale 9 Policy Areas, 26 Recommendations and 120 Implementation Options Broad stakeholder Input Children and Family Issue Paper: 9 Policy Areas 1) Cross Agency Responsibility, Coordination and Financing to Reduce Fragmentation 2) Family & Youth Partnerships and Support 3) Access to Care and Reducing Disparities 4) Broaden Array of Services and Supports 5) Develop & Apply Knowledge 6) Build Workforce 7) Prevent Disorders 8) Communication Strategy and Stigma 9) Accountability and Quality Improvement Built on: Surgeon General’s Reports: Mental Health; Mental Health: Culture, Race & Ethnicity Surgeon General’s National Action Agenda for Children National Academy of Sciences: From Neurons to Neighborhoods New Freedom Commission on Excellence in Special Education Reviews of Evidence-base Practices in Prevention and Treatment Etc. Stakeholder Input & Key Experts American Psychological Association AACAP CWLA NASP Federation of Families for Children’s Mental Health State Family Organizations NMHA NAMI CHADD Professional Guilds/Associations NASMHPD State Children’s MH Directors National Racial/Ethnic Associations Child Policy Centers Natl Assoc. State Directors of Special Education Policymaking Partnership Families & Youth National Assembly on Schoolbased Health Care University Child Study Centers Bazelon Center for MH Law Amer. Acad. Pediatrics Gains Center (JJ) Natl Council on Disability Natl Assoc Psychiatric Health Systems Calif. Institute of Mental Health Early Childhood Programs Community Agencies NASADAD School Mental Health Projects Coalition for Juvenile Justice Natl Council for Community Behavioral HealthCare School-related Recommendations in C&F Background Issue Paper Policy option IV.4.3: Promote Mental Health in the Education System Multi-level, tiered approach Collaboration at Federal, State, local level Workforce (1) Strengthen mental health services in schools and the role of schools in promoting social and emotional well-being ED & DHHS Collaborate to Strengthen and Develop/Implement Plan: Identify strategies to promote the social and emotional well-being of children in schools Identify children who need specialized services Encourage partnerships with families Provide or link children with needed services and supports TA on service options, payment mechanisms, outcomes (2) Expand Prevention and Early Intervention Approaches and Positive Behavioral Supports in Schools ED and SAMHSA work together to expand existing efforts and develop prevention/early intervention approach to social and emotional well being of children in schools. Include interventions at: School system/district level School building level Classroom level Individual level with students with special needs (3) Ensure that Mental Health Services are Provided as Part of School Health Centers DHHS ensure that mental health services are provided through school health centers and allocate funding for this as part of Federally funded mental health and education programs. This will increase access to care. (4) Train teachers and school personnel to recognize signs of emotional problems in children and to make appropriate referrals for assessment and services Pre-service and professional development and staff training for teachers and school personnel to increase ability to recognize “early warning signs” and take appropriate action: Referrals for assessment/services Classroom accommodations Partnering with families Maximize established funding streams (IDEA,No Child Left Behind) (5) Ensure Special Education and Related Services for Children with Emotional Disturbances under IDEA ED work with States to more effectively implement IDEA Services coordination should be considered related services and included in IEPs for children with emotional disturbances under Part B of IDEA. (6) Create a State-level Infrastructure for School-based Mental Health Services Ensure clear, coordinated State agenda for school health and mental health services Collaboration between Education and Mental Health Pool funding for school-based mental health services Link with State’s comprehensive plan for children’s mental health (Goal 2, NFC) (7) Create Specific Funding Streams for School Mental Health Services To support provision of mental health and substance abuse services, designate small percentage of funds from selected programs: Safe and Drug Free Schools No Child Left Behind Safe Schools/Healthy Students Title V School-based Health Center Grants (8) Create a Collaborative Grant Program to Support Effective SchoolBased Mental Health Approaches SAMHSA and ED grants to States, other units of government, and private nonprofit organizations to schools in providing: Screening and assessment Early intervention, crisis interventions, and mental health services to children with or atrisk of emotional/behavioral disorders (9) Study the Role of School Culture in Promoting Social and Emotional Well-being ED, SAMHSA, NIMH study and identify evidence-based interventions for promoting both academic success and social and emotional well-being through strengthening school culture. Information on these interventions to be disseminated and technical assistance provided to increase “uptake” (10) Develop a Comprehensive Strategy for School-based Response to Trauma DHHS, Federal Homeland Security & ED Train/prepare teachers and other school personnel Develop linkages with trained mental health providers for trauma response Include school-based mental health interventions in Federal, State and community disaster and emergency response plans Consider needs of children beyond initial crisis to identify/refer/treat PTSD and other mental health problems following trauma Policy Option IV.5: Achieve Cultural Competence Develop federal leadership to focus on disproportionate numbers of youth of color with MH problems in JJ, foster care and special education. Strengthen capacity of schools to be key link to comprehensive, seamless system of school- and community-based identification, assessment and treatment services. Involve SAMHSA, CMS, Office of SpEd and Rehabilitation Services (0SERS), State agencies Thrust of Recommendations Build a continuum of mental health services in schools: promotion, prevention, early identification, and treatment Federal Level: SAMHSA Child and Families Action Plan – FY 05 New Initiatives State MH Transformation Grants to include children and families (offered) Prototype grants to fund State adolescent SA treatment coordinators to build infrastructure/capacity for services integration Enhance TA Efforts Develop toolkit on SA and MH screening for use in multiple settings with multiple age groups, strategies and incentives for linking to care Develop prototype of individualized plan of care for children and their families Federal Level: SAMHSA Child and Families Action Plan Align Federal Programs Collaborate with Dept of Education to expand school-based mental health programs Collaborate with ASPE, ACF,CMS and Depts. of Education and Justice on eliminating practice of parents giving up custody for treatment Track and Report Child/Family focus across relevant grants Leverage NFC Report for State-Level Reform MH/School Leadership participate in State Mental Health Plans (use experience, outcome and cost data). Major reform efforts in New Mexico (legislation May 2004 Purchasing Collab.17 agencies), Illinois(Ch MH Partnership), South Carolina drawing on NFC Different strategies: focus on specific goal areas or general concept of transformation and recovery (www.nasmhpd.org for state implementation activities) Leverage NFC Report for Local Reform Educate public officials about NFC report and its alignment with mental health in school efforts Use NFC recommendations to fuel innovation, e.g., Westchester County implement recommendation in Goal 4; screening for mental health in Latino primary care clinics Use NFC financing discussion to map behavioral health financing and expenditures across childserving systems to identify opportunities for improved integration and efficiency Social marketing of NFC to gain political will Using the Report Strategically 1. Alignment of NFC principles with underlying principles in school-based mental health 2. Leverage NFC report for local reform 3. Leverage NFC report and local & State data for State level reform 4. NFC report and background papers for advocacy, promoting transformation Websites to Access (Pending) Report www.samhsa.gov. www.mentalhealthcommission.gov www.tapartnership.org