The Promise and Potential of Rosie D. Empowering Parents and Serving Children

The New Medicaid Behavioral Health System Summary of Rosie D. v. Patrick The Pathway to Home-Based Services The Remedial Services Wraparound Principles and Values Empowering Parents: Potential and Promise

Rosie D. v. Romney 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 Role of Parents in the Litigation The inspiration for the lawsuit The most patient participants in the litigation process The most powerful witnesses at trial The most important players in the implementation process The potential beneficiaries of the remedy

The Remedy Court finds Massachusetts in violation of EPSDT provisions of the Federal Medicaid Act Court orders the State to develop in-home services, including comprehensive care coordination, screening, assessments, in–home supports and crisis services Plaintiffs and Commonwealth begin regular implementation meetings 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 Behavioral health screening Comprehensive diagnostic assessments Intensive Care Coordination In-Home Therapy Services In-Home Behavioral Services Therapeutic Mentoring Family Support Workers (Parent Partners) Mobile Crisis and Crisis Stabilization Units

Eligibility for Services Any Medicaid-eligible child (MassHealth Member) who is determined to have a serious emotional disturbance (SED) is eligible for intensive care coordination SED is defined by two federal agencies which use slightly different definitions Any child who meets EITHER definition, as determined by the mental health evaluation, is eligible

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. Children who meet medical necessity criteria for the remaining in-home services can be eligible without a finding of SED. 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.

Pathway to Home-Based Services Screening or Identification Mental Health Evaluation Referral for Care Coordination Comprehensive Home-Based Assessment Wraparound Treatment Planning Delivery of Services

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 Parents, state agencies, and other child serving entities can also refer children in need of 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

Mental Health Evaluation If a positive screen occurs, a referral can be made for a mental health evaluation Parents can also seek behavioral health evaluations directly if a need has already been identified As of November 30, 2008, all diagnostic evaluations will incorporate the Child and Adolescent Needs and Strengths (CANS) survey The CANS includes a structured interview to assess and child and family’s strengths and their service needs State has trained mental health professionals in hospitals, clinics and state agencies to use the CANS, increasing rates and time for conducting evaluations

Intensive Care Coordination Provided by a 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 development of a care planning team including state agencies, schools and other providers Prepares and oversees implementation of a single integrated treatment plan Parents can self-refer or be referred by a mental health clinician or other professional

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 Components of plan include: Treatment goals and objectives Identification and role of specific providers Frequency, intensity and location of service delivery Crisis plans

Home-Based Service Descriptions Mobile Crisis Services Crisis Stabilization Units In-Home Behavioral Services In-Home Therapy Therapeutic Mentoring Parent Partners

Mobile Crisis Services Mobile, on-site, face-to-face response to youth in crisis, available 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

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

Behavior Management Therapy and Behavior Monitoring 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 Includes 24/7 urgent response, flexibility in scheduling, 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, coordinate care Therapist works with youth and the family on development of specific clinical treatment goals to improve youth’s functioning A paraprofessional may assist by supporting the youth and family in day-to-day implementation of treatment goals

Therapeutic Mentoring Services 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, focus on ensuring youth’s successful navigation of various social contexts, skill acquisition and functional progress towards treatment goals

Caregiver/Peer to Peer Support 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

Revised Implementation Timelines July 1, 2009: Intensive Care Coordination, Family Partners & Mobile Crisis October 1, 2009: In-home Behavioral 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.

WrapAround Priniciples and Values 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

The Potential of Wraparound to Empower Families Families and children are the most important participants in the process Their vision and hopes are central to the process Their strengths, rather than needs, guide the process Their culture, style, and preferences must be addressed by the process They are in charge

What this means for children and their families A new array of home and community–based services Supports available with the length and intensity that youth with serious emotional disturbance need An approach which empowers families to direct their own care A process which coordinates all agencies and providers in one team and produces one unified treatment plan

What this means for parent advocates A new resource to help support children in their homes/communities and in the least restrictive educational environment A team of community experts available to work with/influence the school A need for familiarity with eligibility requirements, steps for referral, available services and the expectations of wrap-around A legal entitlement beyond special education