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

2. 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

3. 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.

4. 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.

5. 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

6. 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).

7. 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

8. 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

9. 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 of the federal register
The Public Health Act gives the Secretary of HHS the authority to “establish definitions for the term[…] serious emotional disturbance.” USCA 300x-1
Purpose creation in 1993 for determining incidence and prevalence of emotional disorders under the PHA.

10. 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

11. 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

12. 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.

13. 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

14. 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

15. 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

16. 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

17. 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

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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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

25. 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.

26. 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

27. 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

28. 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

29. 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