Transforming the Medicaid Children’s Mental Health System ROSIE D. V. PATRICK Transforming the Medicaid Children’s Mental Health System

Transforming the Children’s Mental Health System I. Litigation – Purpose and Outcome II. Pathway to Home-Based Services III. Implementation & Monitoring IV. Opportunities and Benefits Across Child Serving Systems

The Litigation – Purpose and Outcome

The Problem in Communities Inadequate behavioral health services leading to negative outcomes for children, youth and families: ● Children stuck in ER’s or institutions ● Limited early identification of mental health needs ● Services without sufficient intensity or duration ● Fragmented service system ● No single point of care coordination and treatment planning ● Inappropriate use of juvenile justice and child welfare systems to address conduct resulting from lack of behavioral health treatment resources

The Problem in Schools Unaddressed behavioral health needs underlying or exacerbating students’ struggles in school: • Children suspended more than 10 days had average of three mental health diagnoses (Rappaport 2006) • Students with mental health needs had a much higher rate of absenteesim, tardiness and lower grades (Gall et al., 2000) • Hospital admissions interrupting educational services • Students left considering more restrictive environments in order to have their social, emotional and behavioral needs met

The Response The class action lawsuit filed in 2001 to compel provision of intensive mental health treatment to Medicaid eligible children in their homes and communities, thus avoiding unnecessary hospitalization or extended out-of-home placement Brought by the parents or guardians of eight children with serious emotional, behavioral, or psychiatric conditions representing a class of Medicaid-eligible children who needed home-based services to be successful in their communities These parents and families were the real heros of this litigation. They invited us into their lives, shared their struggles to care for their children, their frustrations regarding available services and supports, and the pain and trauma of hospitalization and out-of-home placement. They endured with us through years of court proceedings, knowing that the remedy they were fighting for might be a decade away. While some of those children have aged out of the class, manu are still at home and fighting to stay there. Class projections – commissioned an epidemiological study which found that there were approximately 50,000 children on Medicaid with serious emotional disturbance. Some of those children will be well and appropriately served by traditional out-patient services (perhaps 20%). Many will need more intensive, in-home services at some point in time. Remedy currently includes MassHealth members in the standard category and in the expansion population known as Commonhealth – together represent approximately 87 percent of all children on Medicaid (approxiamtely 460,000) One issue currently before the court is whether this Rosie D. remedy, and the rights to medically necessary services under federal law, will apply to other expansion populations covered under the state’s 1115 Medicaid demonstration waiver. Essential (19,20 year olds) and Family Assistance (varies by age of children) are the two groups most likely to contain children who could be eligible for relief in this case. Generally represent persons who are above 300 percent of poverty.

The Legal Claims The federal Medicaid program mandates Early Periodic Screening Diagnosis and Treatment – EPSDT – for children under 21 EPSDT mandates screening and treatment necessary “to correct or ameliorate a physical or mental condition” States must provide this treatment promptly and for as long as needed Found in federal statue at 42 USC Section 1396(a) et seq. is a comprehensive sets of entitlements for children, mandating medically necessary treatment which meet broad definitions of medical assistance, including the category of rehabilitative services, which encompasses behavioral health care.

The Remedy 1/26/06: Court finds Massachusetts in violation of EPSDT provisions of the Federal Medicaid Act 2/22/07 Court orders development of in-home services, including comprehensive care coordination, screening, assessments and crisis services 4/27/07 Appoints Karen Snyder as the Court Monitor 6/18/07 Parties begin implementation meetings 7/16/07 Court enters judgment including detailed remedial plan with implementation timelines. The remedial plans before the Judge contained many similar or overlapping concepts and approaches to services, but also contained very substantive differences. They were probably most similar in regards to use of the wrap-around model and the agreed upon services. Key differences included level of detail (criteria for providers, policies, programs) outcome evaluations and (compliance assessments, surveys and client reviews vs. data collection only) how and to whom services delivered (managed care environment/ approach PCP screening and all SED kids vs only those most at risk).

New Court-Ordered Services Access to Behavioral Health Screening Comprehensive Diagnostic Assessments Intensive Care Coordination In-Home Therapy Services In-Home Behavioral Services Therapeutic Mentoring Family Partners Mobile Crisis and Crisis Stabilization Units

Eligibility for Rosie D. Services Medicaid-eligible members under 21 For intensive Care coordination (ICC) children must have a serious emotional disturbance (SED) and be in MassHealth Standard or CommonHealth Children with SED in other MassHealth categories can transfer to CommonHealth by completing a disability supplement Two federal SED definitions apply. Any child who meets EITHER definition, as determined by the mental health evaluation, is eligible for ICC Children without SED can obtain the remedial services (other than ICC) if medically necessary These two definitions operate within two different staturoty schemes, and are subject to different interpretation, but generally speaking both consider the duration of a child’s illness, some diagnostic standards, and severity or level of functional impairment, meaning how and to what extent the condition interferes with the child’s role in family, school, community, or in developing appropriate social, behavioral, cognitive or other adaptive skills

Federal SAMHSA Definition of SED From birth up to age 18 Who currently or at any time during the past year Has had a diagnosable mental, behavioral, or emotional disorder That resulted in functional impairment which substantially interferes with or limits the child's role or functioning in family, school, or community activities. Substance Abuse and Mental Health Services Administration Found at 58 FR 294220 of the federal register The Public Health Act gives the Secretary of HHS the authority to “establish definitions for the term[…] serious emotional disturbance.” 42 USCA 300x-1 Purpose creation in 1993 for determining incidence and prevalence of emotional disorders under the PHA.

Federal IDEA Definition of SED A condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child’s educational performance… Individuals with Disabilities in Education Act Definition, although reference in statute, is defined in federal special education regulations at 34 CFR 300.8(c)(4) Not defined in IDEA

Federal IDEA Definition of SED An inability to learn that cannot be explained by intellectual, sensory, or health factors An inability to build or maintain satisfactory interpersonal relationships with peers and teachers Inappropriate behaviors or feelings under normal circumstances General pervasive mood of unhappiness or depression A tendency to develop physical symptoms or fears associated with personal or school problems

Co-morbidity and Dual Diagnosis Children with SED, in addition to any other disabling condition, such as autism spectrum disorders, developmental disability or substance abuse will be eligible for the Rosie D. remedy. Of the two definitions, the IDEA is more flexible in several ways, including duration and diagnosis. Its contextual reference to co-ocurring conditions , speciifically ASD, is that … Autism does not apply if child’s educational performance is primarily affected by an emotional disturbance. This makes sense within the construct of the federal special education call, which requires the designation of a particular category of eligibility over another, but it is less clear to what extent that construct will govern eligibility decisions for purposes of the relief in this case.

The Pathway to Home-Based Services

Accessing a Continuum of Care Behavioral Health Screening Mental Health Evaluation Referral for Care Coordination / Other Services Comprehensive In-Home Assessment Wrap-Around Team Process Delivery of Home-Based Services This pathway to accessing services closely mirrors elements of the Federal EPSDT law (Early, Periodic Screening, Diagnosis and Treatment.) It also follows both chronology and process of ongoing implementation of the Rosie D remedy: screening / evaluation / team process and service delivery For better or worse, in building this system, there first needs to be a way to identify and screen children who may need the services, to specifically evaluate them for diagnosis, eligibility or level of need, and then to refer them to the appropriate service options, including regional agency who will faciliate care coordination and the team planning process which ultimately determines which home-based services are needed. Unfortunately what this means for implementation is there will be a period of time when children are identified or evaluated as being in need of the service, before it is actually on the ground being delivered. For this reason, we want to ensure that families and providers 1) are aware of what to expect and when new services should be rolled out; 2) what existing services exist; and 3) what are their ongoing rights to receive medically necessary services, whether covered or uncovered, using state EPSDT regulations. One caveat is that this regulatory process, to be effective, generally requires that a provider be identified who is willing and able to deliver the service sought.

Screening or Identification As of January 1, 2008, primary care doctors/nurses must offer voluntary screening for behavioral health concerns at well child visits or upon request, using one of several standardized screening instruments State agencies and other child serving entities can recommend parents seek such a screening Children with known conditions can bypass screening and be referred directly to a mental health professional for evaluation MassHealth will be maintaining data on screenings, referrals, and families ability to access treatment Early detection and prevention of illness is a corner stone of Early Periodic Screening, Diagnosis and Treatment. So is trying to intervene for children before medical concerns place them at risk of more debilitating conditions. The plan does not mandate or track the identification of children with potential behavioral health needs by anyone other that primary care clinicians. There will be planned education and outreach to other child serving professionals, both by the Commonwealth and CPR, including day care, early intervention and school-based providers, like school nurses. As mentioned above, there will be a group of children who are already receiving some mental health services, either by private clinicians or state agencies or both. These children should be able to jump into this pathway where ever makes the most sense for them, either at evaluation or directly to a referral for a comprehensive home-based service assessment.

Mental Health Evaluation As of November 30, 2008, all diagnostic mental health evaluations will incorporate the Child and Adolescent Needs and Strengths (CANS) survey The CANS uses a structured interview to assess the child and family’s strengths and identify their service needs CANS can be provided by mental health clinicians in various settings (hospitals, clinics, private practices state agencies; CSAs) If the clinician determines SED is present, a referral to intensive care coordination should usually result Developed by John Lyons, it is a series of topics for discussion and review by parents and clinicians to help better understand a child’s strengths, functioning in a variety of environments and potential service needs. A standardized, short version of this evaluation is being developed by the Commonwealth for use by evaluators as part of an overall clinical determination regarding diagnosis and intensity of need. This is designed to provide a common language for evaluators to discuss and consider children who present at their practices.

Intensive Care Coordination ● Delivered by regional network of Community Service Agencies (CSAs) ● Care coordinator works in partnership with family and youth to ensure meaningful involvement in all aspects of treatment ● Facilitates completion of a comprehensive home-based assessment and creation of a care planning team including state agencies, schools and other providers ● Prepares and monitors implementation of a single integrated treatment plan

Treatment Plan Single plan that is child/family centered Integrates other agency/provider plans Team determines the type, amount, intensity and duration of home-based services within parameters Components of plan include: Treatment goals and objectives Identification and role of specific providers Frequency, intensity and location of service delivery Crisis plan

Speed of ICC Response ● Telephone contact within 24 hours of referral ● Face-to-face interview within 3 calendar days ● Upon consent to participate, immediate development of initial risk management and crisis plan ● Comprehensive home-based assessment within 10 days of consent ● Team meeting and plan development within 28 days of consent

The Values of Wraparound ICC team and in-home providers responsible for maintaining fidelity to several core principals: strength-based individualized child-centered family-driven community-based multi-system culturally competent This basically means that parent and family’s voices are central to this process, not just as consultants to a room full of professionals but as partners in the design and construct of services, to maximize their utility and effectiveness for that family and child. The composition of Teams should also be determined together with the family and child, including individuals from the community, friends, clergy, or others who provide natural supports and whom the family want to be involved in ongoing treatment planning. This is a signifigant departure from a typical medical model approach and one that will certainly require ongoing training and education for providers and families to work effectively, consistently, and with fidelity to these core values

The New MassHealth Service Array

Mobile Crisis Services Mobile, face-to-face response to youth in crisis, available 24/7 and for up to 72 hours Delivered by a clinical/paraprofessional team in the home or other community setting Designed to assess, de-escalate and stabilize a child in crisis, offering safety planning, referrals and support to maintain the youth in their natural setting Providers will be the designation ESP programs, which will be redesigned and reprocured in order to deliver these services

Crisis Stabilization Units A community-based, staff secure treatment setting offering short term crisis stabilization services for up to 7 days Designed to facilitate immediate engagement of family/caretakers in problem solving, skill-building, crisis counseling, service linkages and coordination with existing providers Focused on youth’s rapid return to the community, avoiding a higher level of care

In-Home Behavior Services Clinical/paraprofessional team addresses challenging behaviors in the home and community which interfere with youth’s successful functioning Therapist provides behavioral assessment, develops a behavior management plan with the family and reviews effectiveness of the interventions Behavior Monitor helps implement the plan, modeling and re-enforcing behavior management strategies in the home and community

In-Home Therapy Services Delivered in the home or community setting Includes 24/7 urgent response, flexibility in scheduling and frequency and duration of sessions Works to foster understanding of family dynamics, develop strategies to address stressors, enhance problem solving and communication skills, identify community resources, address risk and safety planning, offer care coordination Therapist works with youth and the family on development of specific clinical treatment goals to improve youth’s functioning May be assisted by a paraprofessional who supports the child and family in day to day implementation of treatment goals Therapeutic clinical intervention working to enhance problem-solving, limit setting, communication, emotional support or other goals to support and improve child functioning within the family. Ongoing therapeutic training and support delivered in conjunction with therapist by paraprofessional assist child in understanding and learning to manage emotional challenges.

Therapeutic Mentoring Structured one-to-one relationship between paraprofessional and youth, addressing daily living, social and communication skills in variety of home and community settings Includes coaching and training in age-appropriate behaviors, problem-solving, conflict resolution and interpersonal relationships using recreational and social activities Delivered pursuant to plan of care and supervised by a clinician, with focus on ensuring youth’s successful navigation of various social contexts, skill acquisition and functional progress towards identified treatment goals

Family Support and Training Available through CSA’s and stand alone providers Structured, one-to-one, strength-based relationship with parent/caregiver of youth Delivered by a family partner with experience caring for a child with special needs and utilizing child and family serving systems Supports caregiver in addressing child’s behavioral health needs by identifying formal and informal supports, offering assistance in navigating child-serving systems and fostering empowerment through education, coaching and training

Appeals Any disagreements with the MassHealth agency or Managed Care decisions regarding the need, amount, duration or the termination of services can be appealed through the MCE grievance and Medicaid fair hearing process A dispute resolution process will be in place for Care Planning Teams and state agencies to utilize

Implementation and Monitoring

Design of Home-based Services Each service is defined by program specifications and medical necessity criteria With federal (CMS) approval, services will be part of Medicaid State Plan and receive federal matching money All services can be provided separately or in combination, and delivered in a variety of settings (natural or foster home, school, community) Commonwealth’s federal medicaid obligations include notice and informing provisions under which they need to make MassHealth members aware of the services available to them. The Commonwealth has also agreed to undertake in a limited way, outreach to family groups and to providers, in order to make people aware of the implementation process and to obtain feedback on certain select issues. The Center is embarking on its own outreach and educational campaign as well, with partner organizations in the family, provider and legal communities. We hope this process can augment and further inform key stakeholders about these developments and prepare them for how the system is expected to change over the next two years.

The Service Delivery System Regional Community Service Agencies (CSA) have been selected to provide care coordination and family support and training All Managed Care Entities (MCEs) will contract with CSA network and use some common UM strategies MCE’s are undertaking workforce and provider development activities now Commonwealth will offer wrap-around training and coaching to CSA’s and in-home therapy providers Other training for state agency staff and schools We anticipate there being anywhere from 15-30 regional CSA’s delivering and coordinating home-based services. MassHealth and DMH will establish qualifications, standards and performance measures for each CSA. Their will then be a drafting of contract and procurement documents and the actual negotiations with potential CSA providers. It also intends for MBHP to assist in selection of these CSA’s. The Commonwealth’s intention is for providers in the MassHea;th managed care network to contract with these CSA’s for delivery of home-based services. This process will be unfolding over the next 12 months and certainly much more will be known about its development by the middle of next year.

Monitoring and Court Oversight Court Monitor meets regularly with parties, providers, professionals, and families Compliance Coordinator guides state efforts Parties meet regularly to discuss each element of new system Plaintiffs actively monitor all aspects of implementation Monitor reports to Court about progress and compliance Court meets quarterly with parties and Monitor Although the state has a fair amount of discretion to fill in parts of the remedial plan that were not highly prescriptive in their details, this is a process which is closely monitored by the Commwealth’s compliance officer, the Plaintiffs, the Court monitor and the judge himself.

Revised Implementation Timelines July 1, 2009: Intensive Care Coordination, Family Support and Training, & Mobile Crisis Services October 1, 2009: In-Home Behavior Services and Therapeutic Mentoring November 1, 2009: In-Home Therapy December 1, 2009: Crisis Stabilization Units While two years seems like a lifetime when you have a child in need now, this is actually a very aggressive and ambitious timetable, and the good news is that the Commonwealth has given every indication that they are committed to sticking with these deadlines. One variable which they will be confronting soon is the amount of time it will take for CMS to indicate clearly is position on approval for and federal funding of these home-based services.

Challenges to Implementation Provider capacity and network development Ongoing training / coaching for Wrap fidelity Education and outreach to members Data and outcome measurement Utilization Management Effective coordination with child-serving agencies, courts, probation Number of challenges to implementation process, and their level of priority depend on whether you are a family member, a provider, of a managed care organization… Workforce shortage – number of qualified professionals in/entering field Provider capacity (volume, expertise, geography, cultural competence) Ongoing training and fidelity to the wrap-around model Licensure requirements for MassHealth Orienting familes to the services and empowering them to use them Assessing outcomes and effectiveness Federal approval and financial participation in service delivery Cost – dependant on number of children actually eligible for and making use of system – in FY 2005 MassHealth’s behavioral health expenditures for children under 21 was 202 million dollars. (Court’s estimate 459 million?) Supplemental budget approved October 11th – means 7.8 million for screening rate adjustments and other staff for EOHHS implementation.

Opportunities and Benefits Across Child-Serving Systems

Relevance of Reforms CBHI resources can support professionals and child-serving systems, while improving the experience of and outcomes for Medicaid eligible youth and families ● Schools and educational programs ● Juvenile Justice / DYS diversion programs ● CHINS and child welfare agencies ● Medical and Behavioral Health providers

Benefits of Coordination with Schools Increased access to mental health expertise to inform service and placement decisions Flexible delivery of services in school, after-school and other community settings Ability to coordinate interventions across settings and promote generalization of skills For youth in ICC a single treatment plan and point of contact through the Care Coordinator Additional services to avoid unnecessary institutionalization and support success in more integrated community and educational programs

Challenges to Effective Coordination Avoiding confusion regarding the interaction between two federal entitlement programs Effectively integrating Individual Care Plans and Individual Education Plans Limited school/staff resources for coordination Navigating confidentiality requirements including students’ MassHealth eligibility

Promoting Effective State and Local Collaboration ● Provide meaningful information and outreach to staff / parents Offer training on the scope of remedial services, which students are eligible, how to facilitate referrals and opportunities to coordinate educational and community-based services Develop local and statewide guidance on MassHealth system Identify model policies and best practices for referral and service coordination for effective collaboration with parents and providers Identify and fund infrastructure needed to establish successful linkages with community-based mental health providers and support increased communication and integration of services on behalf of students

Community Involvement in Systems of Care CSA’s are required to convene regional Systems of Care Committees Fosters communication and collaboration between regional state agency staff, courts, schools and other system stakeholders Opportunity to review system-level issues impacting delivery of care, identify area resources and foster ongoing partnerships

Yolanda’s Law: Section 19 Taskforce Created as part of the Children’s Mental Health Law of 2008 Intended to “…build a framework that promotes collaboration between schools and behavioral health services…” Implementation plan involves piloting of framework in 10 schools, interim report (12/31/09), a statewide assessment of needs, and final report with recommendations to Governor/Child Advocate (6/30/2011)

Importance of Interagency Protocols MassHealth required by the Judgment to develop protocols with all EOHHS agencies Necessary to establish consistent expectations, procedures and communication across systems Will address issues like referrals, staff training, Care Planning Team participation and dispute resolution DCF, DYS, DMH and DPH protocols are now available with agency staff training underway; DDS and DEEC in development

Tips for Educators and School Staff Have information about the new MassHealth available to share with eligible students and families Maintain contacts for local CSA’s, service providers and mobile crisis intervention/ESP programs Consider mechanisms for assisting interested families with the referral process Participate in the ICC Wraparound Team process and communicate with care coordinator if requested Discuss school/district wide policies and procedures needed to support access and effective collaboration

How You Can Help Consider where Rosie D. services could be useful in your work and share those ideas with us Help us identify best practices and address obstacles class members may confront Assist in the development of materials/resources relevant to your field Connect with other agencies/entities in your area who might be interested in training on Rosie D. implementation Collaborate with DESE Taskforce and participate in the School Assessment Tool

Additional Information The Center’s website: www.rosied.org contains: News updates and features on implementation An extensive library of litigation documents Other information designed for families, providers and professionals Additional information on the Children’s Behavioral Health Initiative, including program specifications, regional CSA’s and provider networks and information re: access to other MassHealth resources can be found at: www.mass.gov/masshealth/childbehavioralhealth