Emily's Q.'s Story: Using Medicaid Litigation to Expand Positive Behavior Interventions for Children in the Mental Health System
By Melinda Bird[1]

In 1998, child advocates in California filed suit seeking access to intensive, community-based mental health services for low-income children. Like similar lawsuits brought in more than a dozen states,[2] the California litigation, known as Emily Q. v. Bontá, is based on special protections for children in the federal Medicaid Act. Emily Q. has focused on securing behavior intervention support and one-to-one behavior aides. These services hold great promise as a Medicaid-funded, community-based intervention for children and youth whose troubled behavior would otherwise condemn them to restrictive institutional placements in mental hospitals and residential facilities. The federal court entered a permanent injunction and final judgment in Emily Q. in 2001,[3] but three years later, poor implementation and declining utilization led the court to extend its jurisdiction and appoint a special master to monitor compliance with the judgment. Because the barriers to compliance raised in the Emily Q. litigation are unfortunately representative of larger problems in California's juvenile mental health system, broader systemic reform may be necessary to resolving the case and ensuring that children obtain the services to which they are entitled.

Another aspect of the Emily Q. litigation is the fate of the child plaintiffs on whose behalf the suit was filed. While they begin as plaintiffs and class members, children may out-grow their legal entitlement to services and eligibility under the class definition long before any real reform is achieved. The youngsters whose suffering and mistreatment prompted the litigation will not experience any benefits unless their advocates and attorneys are persistent and attend to their needs as well as those of the class. In the case of Emily Q. herself, when she became too old to qualify for assistance under the lawsuit that bore her name, advocates undertook a new strategy based on special education entitlements which finally provided the means for her to return to the community with all the services she needs.

Emily's story

In 1997, disability advocates visiting Metropolitan State Hospital, a locked mental hospital in Los Angeles, met Emily.[4] She was nearly eighteen and had been living in mental health institutions for more than half her life.[5] This young, Latino woman had been exposed to drugs and alcohol before birth and was physically and sexually abused by her mother and in her first foster home placement.[6] At age five, she was placed in a residential facility and had her first psychiatric hospitalization age at six.[7] She was moved from facility to facility and repeatedly hospitalized until age nine, when she was sent to a state mental hospital.[8] Discharged briefly again at age thirteen, she was placed in Los Angeles County's infamous foster care shelter – MacLaren Children's Center - and then placed again at the state hospital at age fourteen, where she remained.[9]

The state employees who work at Metropolitan State Hospital reported that Emily was violent, self-abusive and not amenable to treatment. Their response was to forcibly restrain her and place her in a seclusion room, and to deny her all privileges such as community outings or even school attendance.[10] When she was considered "safe" enough to leave her ward to attend the hospital's on-ground school, she was frequently so over-medicated that she would fall asleep, yawning, at her desk.[11] The U.S. Department of Justice eventually found that the hospital's frequent use of seclusion, physical, and chemical restraint violated professional standards for hospitals of its kind. [12] Emily had been subjected to these practices for eight years.

Emily explained to her advocates that it was her isolation and frustration with confinement that made her act out.[13] She feared that the longer she remained at the state hospital, the more difficult it would be for her to have a normal life: "I am terrified that I might end up here forever."[14] Advocates wanted to help her, but the consensus of every mental health professional that had treated her up to that point was that her behavior was so assaultive, self-injurious and unmanageable that she had no hope of living outside an institution. What options did Emily have?

California's Mental Health System: Failing Its Children

With her history of repeated psychiatric hospitalizations and institutional placements, Emily was unfortunately typical of a group of so-called "high-end" children and youth whose problems escalate, rather than improve, as they are shuttled from placement to placement in the mental health system.[15] The mental health system has failed to provide appropriate services for Emily Q. and other California children like her, as a recent series of reports have documented.[16]

In 2001, California's Little Hoover Commission, a state "watchdog" agency established by the legislature, issued a blistering report on the state's children's mental health system entitled Young Hearts & Minds.[17] The report described how "thousands of children and their families suffer needlessly because mental health care is unavailable."[18]

Many children fail to receive the care they need to recover because of limits on services – including limits on who can be served and when they can be served. . . . Treatment services are available, but prevention services are not. Short-term treatment goals are given a higher priority than services to address long-term outcomes. And funding rules do not create incentives that encourage counties to provide children the most cost-effective treatment.[19]

The Little Hoover Commission found that some "children in California have needs beyond the capacity of existing treatment programs" and are "sent to out-of-state programs"; others "end up in the juvenile justice system, . . . on the streets, or cycling through inappropriate programs."[20] Mental health services for children need to be expanded, but "the State lacks appropriate standards on the care and services that should be available."[21] Further, "[w]hile most children in out-of-home placements need mental health services, there are no mechanisms to ensure these children receive screenings and treatment."[22]

The Little Hoover Commission's critique finds support in other reports and data. In October 2003, a RAND Corporation study listed California as one of three states nationwide which offer the least mental health care to children in need.[23] The study found that a child in Massachusetts, one of the states with the best access, is more than twice as likely as a similarly needy child in California to obtain mental health care.[24] "[D]isparities in service use and unmet need across states were driven by state-level factors" such as Medicaid program policies.[25] The authors recommended that California "improve the delivery of services to children with the highest need, predominantly black and Hispanic children and children in low-income families" by changing its Medicaid policies.[26]

California was also targeted in a 2003 report by the Government Accounting Office (GAO) on "custody relinquishment," a problem which occurs when families are denied access to mental health services for their children and forced instead to place them in the dependency or delinquency system.[27] The GAO found that California was among a group of states in which state Medicaid policies have contributed to the problem of parents being forced to give up custody of their children in order to obtain mental health care.[28]

Mental health data from the California Department of Mental Health (DMH) confirms that many children are deprived of the care they need. Nationally, it is estimated that from nine to thirteen percent of low-income children and youth have a serious emotional disturbance.[29] However, California's publicly funded Medicaid program provides specialty mental health services to only 5.36 percent of eligible children and youth.[30] This suggests that for every child who receives services, another is turned away.

California is not the only state with these problems. According to the U.S. Surgeon General's Conference on Mental Health, "the burden of suffering experienced by children with mental health needs and their families has created a health crisis in this country,"[31] with some of the most visible reminders being the many children stuck in psychiatric hospitals because community services are unavailable, the widespread criminalization of children with serious emotional disturbance in delinquency facilities and the problem of custody relinquishment noted above.[32]

In the landmark case of L.C. v. Olmstead, 33 the Supreme Court held that "unjustified institutional isolation of persons with disabilities is a form of discrimination" prohibited by the Americans with Disabilities Act.34 When children and youth with mental health needs are denied appropriate and less restrictive placements, this is a violation of what are now known as the Olmstead principles.35 National organizations have called for comprehensive state-wide Olmstead planning for children with serious emotional disturbance,36 but many states, including California,37 have failed to provide a meaningful response.

The High Cost of Neglecting Children's Mental Health Needs.

The Little Hoover Commission pointed out that "[i]n the end, the lack of timely and adequate care costs taxpayers millions of dollars in additional criminal justice, education, and health costs – while at the same time diminishing the economic potential of these young people."38 Even on a short-term basis, the cost of institutional placements is high. For example, like Emily, more than one hundred children and youth under age twenty-one are placed at state mental hospitals in the adult and minor's units.39 At an annual cost of more than $149,000 per child, per year, the state spends in excess of $15 million per year on these institutions alone. 40 Although reliance on state hospital beds is diminishing, children may instead be placed in locked, privately-operated community treatment facilities which are almost as expensive. The funds spent on institutional and residential services for children are especially problematic because studies have found no evidence base to support their efficacy, or that children necessarily improve.41

The incidence of costly emergency psychiatric hospitalization for children is also high in California and has doubled in the last ten years, increasing at a rate far higher than that for adults.42 A state study found that six percent of the children under age eighteen served by the Medi-Cal mental health system were involuntarily hospitalized in an acute psychiatric facility and that of these, forty percent were re-hospitalized a second time within six months.43 Psychiatric hospitalization is among the most costly of mental health interventions, with a Medi-Cal reimbursement rate of up to $873 per day.44 California spends an estimated $37 million per year on psychiatric hospitalization services for children, despite the fact that there is little evidence of its effectiveness.45

The Little Hoover Commission estimated that increasing utilization of outpatient children's mental health services by ten percent would save the state $110 million - $44 million in juvenile justice, $27 million in California Youth Authority, $78 million on residential treatment and $1.4 million at Metropolitan State Hospital.46 To illustrate its point, the Commission profiled a young woman named Linda who, like Emily, had been removed from an abusive family, placed in a series of inadequate foster and group homes and been repeatedly hospitalized.

In addition to the moral consequences of failing to address the needs of a child who has been in public custody since she was four-years-old, there are financial consequences. Long-term care, repeat hospitalizations, publicly supported housing and other services will cost the public sector much more than it would have cost to provide Linda with the comprehensive treatment that would have helped her recover when she was a very young child. Funding for mental health care in California is inefficient because it does not ensure that children, particularly children like Linda, receive targeted, comprehensive care that will reduce the need for long-term services.47

Other reports confirm that community based mental health services for children are cost-effective. A 2001 study by the University of California at San Francisco found that community-based mental health services for children with serious emotional disturbance can save more than five dollars in state and federal funds for every dollar invested, by avoiding the greater costs of psychiatric hospitalization and residential placement.48

Positive Behavior Interventions: A New Approach for Mental Health

According to the Judge David L. Bazelon Center on Mental Health Law, "[a]n important component in an effective system of care for children with serious mental or emotional disorders is the presence of an adult - someone who is not a member of the family - to mentor and assist the child at various critical times of the day."49 This para-professional position is called by various names; "in Medicaid the most common terms are 'behavioral aide' and 'therapeutic aide'." 50

Behavioral aides have proven a protective factor in the lives of children with serious mental or emotional disorders. Their focus is social support and social skills development, building a youngster's competencies and confidence and providing school support. Use of behavioral aides can prevent removal of a child from home and avert delinquency. Specifically, a behavioral aide may provide both crisis intervention and rehabilitation services, such as teaching the child appropriate problem-solving skills, anger management and other social skills. In many programs, behavioral aides provide assistance at one or more of the following times: in the early morning to help the child get ready for the day; during the school day, as they accompany the child; after school, engaging the child in constructive activities in the community; and at bedtime, helping the child end the day and retire. For some children, behavioral-aide services may be needed at all of these times, at least for a while.

. . .

Behavioral aides implement a behavioral management plan, furnishing services such as training and reinforcement in social and behavior management skills and building youngster's competencies and confidence. Behavioral aides help a child both to learn and to observe appropriate behavior. Other services include crisis intervention; parent education and assistance to parents in managing their child's symptoms and behaviors; and providing school support and other specific psychosocial rehabilitative activities described in the child's treatment plan. 51

The interventions provided by behavior aides are developed by clinicians trained in the field of applied behavior analysis and focus on the communicative intent of a child's behavior and the antecedents and consequences.52 The beginning point is generally a functional behavioral assessment, which is "the process of determining the cause (or function) of behavior," including what the child "gets or avoids through the behavior."53

Next, a behavior intervention or behavior support plan is developed based on the functional behavioral assessment. Behavior intervention plans include strategies to both reduce unwanted behaviors and also to teach new skills and "replacement" behaviors which serve the same functions as the unwanted behaviors.54

Until recently, behavior intervention approaches, such as the use of behavior aides and positive behavior support plans, were used primarily with children and adults with severe disabilities.55 The use of positive behavior intervention approaches expanded dramatically with amendments in 1997 to the federal special education statute – the Individuals with Disabilities Education Act or IDEA – which mandated the use of functional assessments and positive behavioral interventions, strategies, and supports for problem behavior which impedes the student's learning or that of others.56 For the first time, special education students with emotional disturbance and mental illness had a right to a functional behavioral assessment as part of their special education program, and could qualify for a one-to-one behavior aide.57 One commentator asserts that, "the incorporation of these concepts in the language of a federal law probably represents the most significant policy impact that behavior analysis, or any similar discipline, has ever generated."58

Moreover, "[a]lthough the 1997 amendments to IDEA catapulted functional assessment into a much wider sphere of influence, its popularity was already increasing within the world of behavior analysis and behavioral support."59 For example, California passed special education statutes to implement positive behavior interventions in 1990, and has a framework which is more detailed and comprehensive than the one under IDEA.60

Positive behavior intervention programs have resulted in some remarkable successes with children with mental health needs. One case study profiled a teenager in Redding, California with Tourettes Syndrome and other serious mental health problems. The child was facing residential placement for setting fires, drawing lewd pictures, hate messages and swastikas on walls, and assaulting another child so severely that she lost two teeth.61 With a behavior intervention plan and a therapeutic behavior aide for up to six hours per day, the young man excelled in a regular high school, was on the Dean's list for his academic achievement and soon was able to reduce his reliance on the services of this therapeutic aide.62 The behavior expert who developed his plan and supervised the services explained that this young man is a real success because not only have his behaviors been replaced with socially acceptable alternatives, but he also participates fully in school and his community and is on the road to becoming a contributing member of society."63

According to the Bazelon Center, behavioral aide services for children with mental health needs are sometimes "included in a broader definition of 'wraparound services.'"64 As part of the wraparound process, case managers develop an individualized service plan tailored to the specific needs of the child and family.65 Services based on the needs of the child and family, including the services of a "coach" or "mentor" as part of a child's wraparound program, can be very effective. In Alaska, a wraparound program using an individualized treatment approach and one-to-one behavior services was successful in bringing home every child from residential placement, at a significant cost savings for the state.66

As early as 1995, a pilot wraparound program in Santa Clara County, California, Program Uniting Partners to Link and Invest in Families Today ("UPLIFT"), included home-based positive behavior intervention staff.67 The first case history presented in their report concerned Don, a fourteen-year-old youth, who was in a locked residential facility after having been placed unsuccessfully in six previous group homes where he had sexually assaulted younger children.68 With a therapeutic behavior aide, Don soon was able to return home to his family and attend a regular school where he joined the marching band, participated in football, swimming, singing, and drama class.69 His family attributed much of his success to an UPLIFT staff member who followed Don everywhere, including helping him get up in the morning, supporting him at school and with his peers and helping him pursue interests in the community.70 As the services of the shadow mentor were reduced, Don was able to graduate from Program UPLIFT, holds a part time job and planned to attend college.71

A Behavior Plan for Emily

In 1998, when advocates met Emily at the state mental hospital and considered community-based options for her, they noted that all of the conventional mental health interventions attempted with her had failed.72 Consequently, they decided to seek positive behavior intervention supports, which were seldom considered for mental health patients at that time.73 Emily's advocates called in one of the nation's top behavioral experts, Dr. Thomas Willis, of the Institute for Applied Behavioral Analysis (IABA), to design a program to facilitate her release from the hospital and support her in the community.74 Dr. Willis developed a detailed, eighty-page functional assessment report and behavior intervention plan for Emily.75 He agreed that her challenging behaviors had clear antecedents and thus could be modified and replaced.76

For example, Emily would escalate her behavior when she was ignored, which occurred frequently in an institutional setting with low staffing ratios.77 Dr. Willis described this as a "behavioral shout," or request for attention.78 Dr. Willis' meticulous analysis of the nursing notes and logs in Emily's hospital charts confirmed that incidents involving restraint and seclusion mostly occurred when her requests for attention were ignored.79 Emily's behavior support plan included a one-to-one aide for her entire waking day at the hospital and in the community after her discharge to provide her with behavioral support and consistent, positive reinforcement.80

Another crucial element in addressing Emily's behavior was positive programming: structuring her time with social skills training in the context of highly motivating, enjoyable activities.81 One expert explains:

We have found that a client's behavior is often aggravated rather than improved by being in a restrictive, institutional setting. In many institutional settings, the environment is so barren and isolating that there is little motivation for the individual to act in a socially appropriate way. Conversely, the only attention she may receive is from misconduct which in fact reinforces the difficult behaviors. A child in such a situation probably will deteriorate.82

Hospital staff often barred Emily from attending school unless she maintained good behavior for weeks or even months at a time, something she was almost never able to achieve, leaving her ward or participating in group activities or trips outside of the hospital. 83 As a result, she had no positive experiences at the hospital. In her behavior intervention plan, Dr. Willis directed that she have a variety of positive, enjoyable activities provided in a non-contingent manner, including regular trips outside the hospital into the community, theater activities, games, and drawing.84

Emily herself recognized that she needed to learn from someone how to live normally outside the hospital without feeling scared, something with which a therapeutic aide could help her.85 She wanted an aide to accompany her throughout the day, demonstrating appropriate responses to different real life situations and re-directing her when she became frustrated, upset, or out of control.86 Even simple behaviors like learning to wait or tolerating frustration are skills that children like Emily must re-learn in order to transition after a period of institutionalization.87

Dr. Willis explained that because standard treatment approaches simply have not worked for Emily, access to therapeutic behavioral aides and a positive support plan represented her only chance for being able to live in the community and to "avoid spending the rest of her life in a locked institution."88 Unfortunately, neither the state hospital nor the county which placed Emily there would agree to hire a behavior aide for Emily or to implement Dr. Willis' behavior plan for Emily, so her prospects for discharge were dismal.89

Advocates File Suit in Lawsuit in 1998 Seeking Behavior Intervention Services.

Medicaid is a cooperative federal-state program by which states provide medical assistance to their low-income residents with financial participation from the federal government. 90 Medi-Cal, as California calls its Medicaid program, serves more than 3.2 million children and youth under age twenty-one.91

As a condition of receiving federal matching funds, the Medicaid statute requires that states implement the "Early, Periodic, Screening, Diagnosis and Treatment" (EPSDT) program for Medicaid-eligible children under age twenty-one.92 Participating states must provide screening services to identify defects, conditions and illnesses.93 State EPSDT programs must also provide children with diagnostic and treatment services "to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening service, whether or not such services are covered under the State [Medicaid] plan."94 Consequently, states may be required to provide children with a broader range of services under the EPSDT program than they are required to provide adults.95

For many years, California failed to implement the treatment component of the EPSDT program--providing screening--but no additional treatment services beyond those available to adults.96 In 1993, advocates filed a lawsuit, T.L. v. Belshé,97 seeking additional EPSDT services.98 A settlement was reached when the state agreed to promulgate new regulations governing supplemental EPSDT services, provide home-based shift nursing coverage for children who would otherwise be in nursing facilities and pediatric sub-acute facilities and transfer additional funding to the state mental health department for EPSDT mental health services.99

Mental health services for children may have expanded after the T.L. case, but were still comparatively limited. However, at least five states already provided behavioral aide services under their EPSDT programs.100 In one state, Pennsylvania, Medicaid funded behavioral assessments and therapeutic behavior aides for up to eighteen hours per day.101

Consequently, EPSDT and Medicaid seemed to be the most promising way to obtain the behavior support services that Emily and other children in mental institutions needed.102In May 1998, attorneys from Protection and Advocacy, Inc., Western Center on Law and Poverty, Mental Health Advocacy Services and Public Counsel filed a complaint and a motion for a preliminary injunction in federal district court in Los Angeles.103 The complaint alleged that Emily and the other five named plaintiffs had been receiving mental health services through Medi-Cal but were deteriorating, as reflected in their psychiatric hospitalizations, episodes of assault and aggression and suicide attempts.104 The pleadings detailed their very difficult lives, and the anguish of their parents and caregivers made a passionate case for their need for more intensive, individualized and strength-based services and access to one-to-one therapeutic behavior aides.105

Surprisingly, the state mental health agency agreed that children were entitled to more intensive one-to-one services than they had been receiving.106 A DMH official proposed to develop a new service which the state called Therapeutic Behavioral Services (TBS), to address the needs of children in or at risk of high level residential placements.107 As conceived by the state, TBS would involve a trained staff person available on a one-on-one basis to work with a child with severe emotional or mental disabilities in his or her home and community.108 The state framed TBS as a short-term service intended to prevent a young person from having to go into a more restrictive placement, or to support the transition from an institutional placement back to the child's home or community.109 In a draft paper which was later incorporated in a federal court order, the state described the new service:

TBS is an EPSDT supplemental service benefit for children/youth with serious emotional problems who are experiencing a stressful transition or life crisis which, without adequate short-term support, puts them at risk of placement in an institution or [high-level] group home or of being unable to transition from that level to a lower level of residential care. . . . TBS provides critical, short-term support services for full scope Medi-Cal children/youth for which other specialty mental health Medi-Cal reimbursable interventions have not been, or are not expected to be, effective without additional supportive services. . . . TBS involves a qualified provider/staff person being immediately available during designated time periods to provide individualized behavioral interventions as needed at home, school or other community-based setting.110

The state's plan also explained that "TBS is one type of a broad variety of individualized services that may be used in a 'wraparound' process. . . . The guiding principle of the wraparound process is to do what is needed when it is needed to achieve the child/youth's treatment goals."111

Pleased with the proposal from the state Department of Mental Health (DMH), the children's lawyers took their motion off calendar, but the state soon reneged on its commitment to implement TBS. The children's attorneys filed a new round of motions and the federal court granted a state-wide preliminary injunction requiring the state to implement TBS based on its original plan in July, 1999.112 The court also certified a class consisting of children and youth under twenty-one who receive Medi-Cal and (a) are placed in a high-level residential mental health facility, or (b) are being considered for placement in these facilities, or (c) have undergone at least one emergency psychiatric hospitalization related to their current presenting disability within the preceding twenty-four months.113 The state estimated that approximately 24,000 children met the class definition,114but not all would qualify to actually receive TBS.115

On March 30, 2001, after eighteen months of negotiations between the parties, including extensive legal briefing and the submission of more than 2000 pages of exhibits, Judge E. Howard Matz issued a permanent injunction and final judgment in Emily Q. v. Bontá.116 The judgment bound the state health and mental health agencies and the county mental health plans to continue to provide TBS to class members.117 It included new notice provisions to ensure that children and their families know about the mental health services available to them.118 DMH was required to assure that new brochures describing both TBS and EPSDT mental health services would be mailed to families, distributed to children in foster care and given to every child at the time of a psychiatric hospitalization.119 The federal court also ordered that a new certification form must be completed to ensure that TBS is considered as an alternative before children and young people are placed in out-of-home residential placements and hospitals.120 Class members already placed in the state mental hospitals were to have special TBS assessments completed and provided to their families, attorneys and plaintiffs' attorneys.121 DMH was directed to monitor provider capacity, identify counties with "disproportionately low TBS utilization," and take any necessary corrective action.122 Finally, the court retained jurisdiction for three years and required DMH to provide quarterly reports and data to the children's attorneys on TBS utilization and the corrective action it had undertaken.123

With this structure in place, improvements seemed possible. When the GAO prepared its report on custody relinquishment in 2002, it pointed to California's TBS as an example of a transition service that can "prevent some child welfare and juvenile justice placements" by "providing the services parents need to maintain the child in the home."124

Six Years Later, Only Slow and Erratic Progress in Implementing Therapeutic Behavioral Aide Services.

At first, the TBS program grew steadily as counties added new providers and gained experience with the new service. A former county mental health director who was "skeptical about TBS" at first, "soon saw how effective TBS can be, and that it is a "potent treatment tool."125 Staff members at mental health agencies that began providing TBS described it as a "highly successful" service, a "wonderful program" and "an effective tool" to assist families "to stay together."126 One provider described how TBS resulted in a "remarkable reduction" in out-of-home placements.127 Another provider explained that he had not initiated a single hospitalization at his sixty-six bed group home since his agency was able to implement TBS, although hospitalizations were frequent before that time.128

For some children and their families, access to TBS was life-changing. One mother explained that she would not have needed to place her severely mentally ill daughter in a foster care group home "if TBS had been provided sooner."129 Once TBS was available, her daughter was able to come home and "things have improved a great deal."130 Her child, now nine years old, has "learned to take responsibility for her own actions, . . . to problem solve and[,] . . . to come to me when she has issues or concerns. . . . There has been more progress made with the TBS than with her therapist."131

This growth of the TBS program was reversed starting in January 2002, when DMH began a series of audits of every approved claim for TBS. Although no evidence of fraud was ever uncovered, the audits had a chilling effect on utilization, since no other mental health service had ever been singled out for review and one-hundred percent audits were unprecedented. One experienced observer noted that "an audit targeted at one service is a clear signal that this service is unacceptable."132 DMH also developed new, complex pre-authorization requirements for TBS which further dampened utilization.133

DMH's audits and new pre-authorization rules sent negative signals to the county mental health plans to restrict TBS utilization.134 The Little Hoover Commission had explained the dynamic in its 2001 report:

Expanding EPSDT services . . . has been hindered by warnings from fiscal control agencies. The Department of Finance and the Legislative Analyst are concerned that EPSDT bills are rising. The Department of Mental Health has promised detailed scrutiny of billings. Together, these actions have signaled counties to be cautious about increasing EPSDT-funded services. So while EPSDT was conceived to provide comprehensive services to children enrolled in Medi-Cal, many do not receive services. Counties also have been held liable in the past when the State has told them to expand access to services, but then implements regulations that limit who can be served and how services are offered. The safe path for counties is to limit access.135

Although the judgment required DMH to monitor counties with "disproportionately low TBS utilization" and take necessary corrective action, DMH never defined how it would measure this and had taken no corrective actions since 1999 when the program was implemented.136 Because DMH focused exclusively on correcting any potential over-utilization and did nothing to address under-utilization, all the incentives – both fiscal and for staff time – were to limit the program.137

By June of 2003, the decline in utilization was apparent even from the limited data provided in DMH's reports.138 An expert who reviewed the data observed that "[w]hen use of a service increases and then drops dramatically as it has in California, a problem exists. In my experience, such a decline in approvals cannot represent a decline in need, but instead must be due to administrative constraints unrelated to need."139 Equally troublesome were the disparities among the fifty-eight counties in California. A child's chances of being approved for TBS were twenty‑five times greater in Orange County than adjoining San Bernardino County.140 While some counties offered extensive TBS, several counties had not approved a single child for TBS since the program began.141

Many children suffered from the delays and denials of TBS which resulted from the new restrictions. J.S. was a twelve-year old boy with post-traumatic stress syndrome resulting from his mother's repeated threats to his life.142 J.S. went through 10 psychiatric hospitalizations in eleven months, and was re-hospitalized less than a week after the county had placed him in a high-cost group home only slightly less restrictive than the state mental hospital. Yet, the county he lived in repeatedly refused to approve TBS for him, holding him instead at the county juvenile hall when placement after placement fell through.143 The greatest tragedy was that his father, a single parent, "could have kept J.S. at home if he had been provided with very intensive TBS."144

In Los Angeles, a TBS provider reported that two children were removed from their family homes because the agency could not start TBS in time due to "incredible delays" in getting pre-authorization.145 Parents and other providers also reported that children were hospitalized or at risk of losing placements due to the delays and denials of TBS following the audits and new pre-authorization rules.146 A TBS provider explained that when the county prematurely terminated TBS for one child, "[t]hat county didn't save money," since the $10,000 per month cost of the group home is "certainly more than the 25 hours of TBS per month that we wanted to provide."147

Federal Court Agrees to Modify the Judgment and Extend Jurisdiction

In October 2003, attorneys for the plaintiff children filed a motion to modify and clarify the judgment, arguing that its purposes were being frustrated and that the state was not in compliance. As an expert witness, they brought in Dr. John VanDenBerg, a respected, national expert in wraparound services and other individualized mental health services, who had directed the mental health programs of several states.148 He concluded that "TBS services [in California] are being dramatically underutilized. As a result, the Medi-Cal program is leaving thousands of children with serious mental health needs without access to this valuable service."149 In Dr. VanDenBerg's opinion, a "conservative estimate" is that five to ten percent of the children receiving mental health services from the counties and who have serious emotional disturbance (SED) should qualify for and would benefit from TBS:

A high rate, of at least 50% or more, of all children and youth with SED have co-occurring disorders (dual diagnosis) and/or involvement with more than one public system, such as mental health, child welfare, and juvenile justice. . . . Virtually all children with co-occurring disorders will benefit from direct care services such as TBS. . . . Because California defines eligibility for TBS more narrowly than other areas, only those children with SED who are also at risk of out-of home placement or who have also had a psychiatric hospitalization will qualify. In my experience, at least 5 to 10 % of children with SED will meet these additional conditions.150

Based on Dr. VanDenBerg's "conservative estimate,"151 of the 158,000 children and youth under age twenty-one served by the county mental health plans in fiscal year 2001-2002, from 7900 to 15,800 should have been approved for TBS annually.152 In reality, only 2,636 children were approved for TBS during that same period, less than a third of the lowest range of estimated need.153

In an order issued on January 29, 2004, the federal court granted the children's request for further relief.154 Judge Matz found that: (a) "utilization of TBS had remained low even by state's own standards," (b) TBS was "underutilized leaving thousands of class members without access to this service," (c) the state had failed to determine or demonstrate what constitutes an adequate TBS approval rate or to take effective corrective action against county mental health plans where either no class members, or a disproportionately low number of class members, have been approved for TBS, (d) many class members were not receiving the services to which they are entitled and that as a result, (e) the purpose of the 2001 Judgment was not being fulfilled in a material respect.155 The order also extended the court's jurisdiction for an additional 18 months,156 ordered the state to adopt an expedited authorization procedure for TBS,157 and directed the parties to collaborate to develop a plan to increase TBS utilization.158

Throughout 2004, DMH, the children's attorneys and other stakeholders, including representatives from the counties and TBS providers, met to try to negotiate ways to increase TBS utilization.159 The state agreed to some changes, including a plan to post compliance data on the state's website and an agreement to review TBS implementation in a few counties.160 Judge Matz issued a new ruling to relieve some of the constraints the state had imposed on TBS,161 but there was no progress on the central disputes, such as whether there should be a minimum TBS utilization rate that every county should meet and whether counties should be required to use a wraparound approach in delivering TBS, as plaintiffs had requested.162

Federal Court Appoints a Special Master

After nine months of hearings and interim orders regarding compliance, the federal judge suggested the appointment of a special master.163 The involvement of special masters and court monitors has been a promising development in mental health litigation, including children's mental health cases. Monitors or masters have been appointed in systemic child welfare and mental health cases in many states,164 including Hawaii,165 Arizona,166 Alabama,167 Utah,168 and the District of Columbia.169

Federal Rule of Civil Procedure 53(a)(1)(C) provides, in pertinent part, that "a court may appoint a master . . . [to] address pre-trial and post-trial matters that cannot be addressed effectively and timely by an available district judge or magistrate judge of the district." The present rule, which was amended effective January 1, 2003, "is designed neither to encourage nor discourage the use of masters," and post-trial masters may be appointed to assist the court in "framing and enforcing complex decrees."170

Prior to the 2003 revision, Rule 53 required exceptional conditions for appointment of a master,171 but even under that more stringent standard, the "prospect of noncompliance" with a court order "is an 'exceptional condition' that justifies reference to a master."172 Indeed, the "power of the federal courts to appoint special masters to monitor compliance with their remedial orders is well established."173

On January 3, 2005, the district court appointed Dr. Ivor Groves as special master in Emily Q.174 The master will submit a series of quarterly reports before the scheduled termination of the court's jurisdiction in November 2005.175 A key question for the special master in this new phase of monitoring will be whether access to TBS and one-to-one behavior aides can be increased significantly without addressing the more fundamental problems with the children's mental health system. If the overall provision of services is inadequate, as the Little Hoover Commission and other commentators assert,176 then providing TBS alone will be of little effect. Since the court issued a broad charge to the special master to "make other recommendations to the parties and to the Court on how to improve delivery of TBS and effectuate the purpose of the Judgment,"177 the master may conclude that broader system change is necessary to ensure that class members receive TBS when needed and make recommendations accordingly.

An answer to the question about whether broader system reform is a prerequisite for compliance with the judgment may arise as the special master oversees a series of "focused reviews" of county mental health plans with low TBS utilization.178 The children's attorneys hope to incorporate a quality service review to develop accountability and new measures of system performance.179 Using each child's individual case as a lens to test and measure of the effectiveness of the mental health system, such a review looks at actual children's case files to see whether there is a long-term plan, crisis services available, family involvement, etc.180 Since the state's present focus is on audits aimed at technical compliance with documentation requirements, incorporating a case-focused approach may fundamentally improve service outcomes.

Class Action litigation and Systemic Change Leave Emily Behind.

After years of slow progress on the Emily Q. class action, what happened to Emily herself? Unfortunately, she derived no benefit from the litigation. Despite the comprehensive behavior support plan developed by Dr. Willis and the new Medicaid benefit developed in her name, she never met discharge criteria for release from the hospital.181 Her behaviors while institutionalized were so difficult that no other community-based provider or residential facility was willing to take a chance on her.182 She was infamous at the hospital for her role in the lawsuit and staff often seemed to go out of their way to provoke her outbursts. The hospital refused to allow a TBS aide to work with her while she was still on the ward, citing the "therapeutic milieu."183 Moreover, the state's cautious interpretation of the complex Medicaid reimbursement rules made it impossible to fund a one-to-one aide to work with her while she was still in the hospital.

In addition, Emily aged-out of the class in her own lawsuit. EPSDT covers children and youth only up to their twenty-first birthday.184 Emily turned twenty-one on March 10, 2001, three weeks before the federal court entered its permanent injunction.185 Still, she never gave up and never stopped calling her lawyers to ask about her release date. That her lawyers had hit a brick wall and that she was no longer eligible for the very benefits, which bore her name, was no excuse. Emily would not let herself be forgotten.

In late 2001, desperate for another legal strategy, Emily's advocates began to focus on the special education mandates in IDEA, rather than Medicaid. Although Emily was no longer eligible for EPSDT benefits, her special education eligible continued until her twenty-second birthday, and she remained eligible for compensatory special education for another three years thereafter.186 Since positive behavior interventions and functional behavior assessments were expressly required under special education law, and since these protections applied even to children in acute hospitals, the new approach worked where Medicaid did not.187 Moreover, Dr. Willis, the expert who developed her behavior support plan, was on familiar ground since he had worked with many special education students and testified at special education hearings.188

In March 2002, Emily's advocates filed a request for a special education administrative hearing, arguing that she had been denied behavior supports, community experiences and independent living skills required by IDEA.189 The administrative hearing consumed three weeks in June and July of 2002 and was held on the grounds of the state hospital; Emily attended each day. The hearing officer's decision was released in September 2002 and was entirely favorable.190 The forty-five page, single-spaced hearing decision analyzed the testimony from twenty-six witnesses and more than two thousand pages of evidence.191 The hearing officer found that Emily had been subjected to "numerous and egregious" violations of special education law had been denied a free and appropriate public education for the past three years.192 The hearing officer found that "[Emily's] history of institutionalization has resulted in the very behaviors that now keep her in a locked facility – a vicious cycle which can only be broken with the intervention of appropriate behavioral techniques."193 She ordered the state hospital and the school district to provide Emily with compensatory education in the form of a comprehensive program of behavioral services, independent living services and functional skills training.

The special education hearing decision was remarkable for several reasons. First, the compensatory education benefits were entirely non-academic in nature and intended solely to "prepare [Emily] for independent living and employment in the community."194 For transition age youth such as Emily, classroom education is not developmentally appropriate; many youth will refuse special education services thinking that this is all they can get. The educational programming they need should include "opportunities [] to participate with [] non-disabled peers in community settings," "community and vocational experiences outside the classroom setting, training in independent and daily living skills and a functional skills curriculum;" which was precisely what the hearing officer ordered.195 The hearing officer also found that because "[Emily's] behavior has been the primary reason for her continued institutionalization, and [has] been the main impediment to her integration and placement in the community for most of her life, . . . implementation of [her behavior intervention plan] is essential to [her] entitlement to compensatory education."196

Second, Emily's behavior plan called for one-to-one staffing for up to sixteen hours per day, and for two staff members to support her at certain times, especially when she was out in the community.197 The hearing officer agreed to order this intensive level of behavior support according to her behavior intervention plan,198 which is more attention than Emily would have been able to receive through TBS and Medicaid.

Third, the school district which operated the on-grounds school at the state hospital argued that the decisions to keep Emily in restraints and exclude her from school attendance were medical decisions for which it was not responsible. The hearing officer found that "[Emily's] educational needs fell through the chasm that existed between the medical and educational divisions at [the state hospital]."199 Because "[t]here is nothing in the IDEA that authorizes such a wholesale abdication of the [local educational agency's] educational responsibilities, even where medical issues are impacting a student's ability to benefit from his or her education,"200 the hearing officer imposed joint and several liability on the school district and the hospital. Finally, the hearing officer was undeterred by estimates that the services Emily needed would cost more than $118,000 per year, noting that this "appears to be slightly less than the amount taxpayers spend every year to maintain [Emily] as a resident at the state hospital."201

The state hospital and the school district refused to comply with the administrative hearing decision and appealed.202 After a blizzard of cross motions for stays and injunctive relief in federal court, the defendants eventually agreed to a very favorable settlement which included a lump sum cash payment to fund the services she needs, made payable to a special needs trust created for Emily, plus attorneys' fees for her advocates.203

Emily was finally released from the hospital in October 2003. A vibrant and enthusiastic young woman, she is living in a small house in a suburb of Los Angeles. In the years since she left the state hospital, she has not had a single hospitalization, nor has she injured herself or anyone else. She volunteers in the community and has joined a church group. Emily continues to need an aide to support her throughout the day, but she can see ahead to the day when she will be more independent. She is aware of how far she has come and what she has accomplished. She has already spoken at two conferences about her experience and is proud that she was able to help others through the lawsuit and through her own example. Emily is in every way a success story, both for her individual triumph and for the children and youth who have been helped by her willingness to stand up for others.

[1] The author is managing attorney of the Los Angeles office of Protection & Advocacy, Inc. (PAI), a disability rights program in California, and lead counsel in Emily Q. v. Bontá. She can be reached at melinda.bird@pai-ca.org. Special thanks are due to co-counsel Robert Newman, Western Center on Law and Poverty, Jim Preis and Nancy Shea, Mental Health Advocacy Services-Los Angeles and Maggie Roberts and Stuart Seaborn, PAI, as well as the other members of the extraordinary litigation team who worked on the case over the years; Virginia Weisz, Public Counsel; Eva Casas-Sarmiento, Suzanna Gee, Marilyn Holle, Matthew Fishler, Pamila Lew, Anne Lukito, Cynthia Prado, Keith Sakimura and Hillary Sklar, PAI. Thanks are also due to all the other PAI staff members who provided generous and unflagging support for Emily, the case and all our clients: Rosa Alas, Suzi Bernais, Catherine Blakemore, Linda Daitsman, Kim Drolet, Carlos Garcia, Rita Lindgren and Dara Schur.

[2] Jane Perkins, Fact Sheet: Medicaid Early and Periodic Screening, Diagnosis and Treatment: Recent Case Developments 2-3 (Natl. Health L. Program 2004), http://www.healthlaw.org/index.cfm (select Topic: EPSDT) (for more discussion of EPSDT, see Jane Perkins and Sarah Somers, Toward a Healthy Future: Medicaid Early and Periodic Screening, Diagnosis and Treatment Services for Poor Children and Youth (Natl. Health L. Program 2003), http://www.healthlaw.org/library.cfm (select NHeLP Publications); Jane Perkins & Randolph T. Boyle, Addressing Long Waits for Home and Community-Based Care Through Medicaid and the ADA, 45 St. Louis U.L. J. 117 (2001)).

[3] Emily Q. v. Bontá, 208 F. Supp. 2d 1078, 1110 (C.D. Cal. 2001); see also Protection & Advocacy, Inc., A Guide to Children's Mental Health Services Under Medi-Cal, http://www.pai-ca.org/Pubs/518801.pdf (Oct. 2002) (listing a manual on advocacy strategies to access Medicaid mental health services for children in California).

[4] Emily Q., 208 F. Supp. 2d at 1080.

[5] Id.

[6] Inst. for Applied Behavior Analysis, Behavior Assessment Report and Intervention Plan 8 (July 3, 1998) [hereinafter IABA].

[7] Id. at 1080.

[8] Student v. Metro. St. Hosp., Cal. Spec. Ed. Dec., Case No. 778 "Background Facts" ¶ 2 (August 22, 2002).

[9] IABA, supra n. 6, at 2.

[10] Id. at 20-22.

[11] Id.

[12] U.S. Dept. of Just., Civ. Rights Div., Spec. Investigations Unit, Investigative Findings Letter re: Metropolitan State Hospital, May 13, 2003 33 http://www.usdoj.gov/crt/split/documents/metrol_findings_let428.pdf (Feb. 2004).

[13] Decl. of Emily Q. ¶ 9 (Jan. 13, 1999).

[14] Id. at ¶ 10.

[15] Decl. of Dr. John VanDenBerg ¶ 13 (Nov. 12, 2003).

[16] See generally Little Hoover Commission, St. of Cal., Young Hearts & Minds: Making a Commitment to Children's Mental Health, http://www.lhc.ca.gov/lhcdir/report161.html (last updated Oct. 17, 2001).

[17] Id. at 1-4.

[18] Id. at 21.

[19] Id. at x.

[20] Id. at 27.

[21] Id. at 31.

[22] Id. at 44.

[23] Ronald Sturm et al., Geographic Disparities in Children's Mental Health Care, 112 Am. Acad. Pediatrics 308, 308 (2003), http://pediatrics.aappublications.org/cgi/reprint/112/4/e308.pdf.

[24] Id.

[25] Id. at 314.

[26] Id.

[27] U.S. Gen. Acctg. Off., Child Welfare and Juvenile Justice: Several Factors Influence Placement of Children Solely to Obtain Mental Health Services 13-14 (U.S. Gen. Acctg. Off. July 17, 2003), www.gao.gov/cgi-bin/getrpt?GAO-03-865T [hereinafter GAO Report].

[28] Id. at 19-22.

[29] 63 Fed. Reg. 38661, 38662 (July 17, 1998). The Federal Center for Mental Health Studies has published prevalence rates for serious emotional disturbance, reporting a range of 9 to 13%, but also incorporating the "singular use of poverty as an adjustment to prevalence rates" within a community. States with poverty rates of 22% or greater were assigned an SED prevalence range of 11 to 13%; a group with a poverty rate of 100%, Children on Medi-Calwould be at the highest end of this range, that is, at 13%. Id.

The California mental health agency has published its own updated prevalence rates for children and youth under 200% of poverty, which are 8.9% for children under age eighteen and 11.66% for youth aged eighteen to twenty. Prevalence Table 2: Prevalence Estimates for Persons in Households >200 Percent of Poverty For 2000 Census and Updated to July 2004 Estimates of Prevalence of Persons with Serious Emotional Disturbances (SED) and Serious Mental Illness (SMI) California, http://www.dmh.cahwnet.gov/SADA/docs/Prevalence%20Rates/California/Table2.pdf (2004).

[30] See Short-Doyle Medi-Cal Penetration Rates for EPSDT Services, http://www.dmh.cahwnet.gov/SADA/docs/Medi-CalTrendReport/ EPSDT%20Trends%201994-94%20through%202002-03.pdf (Oct. 2005) (DMH data shows a penetration rate of 5.36% for fiscal year 2002-2003).

[31] U.S. Pub. Health Serv., Rpt. of the Surgeon General's Conf. on Children's Mental Health: A Natl. Action Agenda 1, http://www.hhs.gov/surgeongeneral/topics/cmh/cmhreport.pdf (2000).

[32] Bazelon Ctr. on Mental Health L., Olmstead Planning for Children with Serious Emotional Disturbance: Merging System of Care Principles with Civil Rights Law 2, http://www.bazelon.org/issues/children/publications/
mergingsystems/olmsteadchildren2.pdf (Jan. 2005) [hereinafter Olmstead Planning].

33 527 U.S. 581 (1999).

34 Id. at 600.

35 Olmstead Planning, supra n. 32, at 14.

36 Id. at 5-6; see also Perkins & Boyle, supra n. 2, at 141-142.

37 See Ltr. from Deborah Doctor for Coalition of Californians for Olmstead, to Hon. Grantland Johnson & Agnes Lee, Secretary & Deputy Secretary, Dept. of Health & Human Serv., Response to California's Draft Olmsted Plan 1-2 (Mar. 21, 2003) (available at http://www.pai-ca.org/coco/ResponseFinalDraft.pdf.).

38 Little Hoover Commission, supra n. 16, at 21.

39 Ltr. from John Rodriquez, Dep. Dir., Cal. Dept. of Mental Health, to Pamila Lew, Staff Attorney, Protection & Adov., Inc., Public Records Act Request (Jan. 30, 2003).

40 Id.

41 See Lynn Marsenich & California Institute for Mental Health, Evidence-Based Practices in Mental Health Services for Foster Youth 50, http://www.cimh.org/downloads/Fostercaremanual.pdf (Apr. 24, 2002) (these studies provide evidence that some children, particularly boys, have poorer outcomes as a result of residential placement).

42 Cal. Dept. of Mental Health, Involuntary Detentions in California: Fiscal Years 1990-91 through 1999-2000 9, http://www.dmh.cahwnet.gov/SADA/docs/Involuntary-Detention-Data/
Intro-10yrTrendRpt2003.pdf (Dec. 2002).

43 Nancy Callahan & Alan Yamamoto, California's Medi-Cal Mental Health Delivery System -- Independent Assessment of the HCFA 1915b Waiver 1 – 71 (Sept. 1999). A more recent study by this same researcher confirms that for the 1999- 2000 fiscal year inpatient hospitalization rates remained at approximately six percent. Cal. Dept. Mental Health, Rehospitalization Special Study 17, http://www.dmh.ca.gov/QIC/docs/Rehospitalization_Study_Final_Draft_10-11-02.pdf (Oct. 2002).

44 Cal. Dept. of Mental Health, DMH All-County Information Notice 03-14 "Enclosure A", http://www.dmh.cahwnet.gov/DMHDocs/docs/notices03/03-14_Attach_1.pdf (Nov. 2003).

45 Id. At $873 per day, an average hospitalization of three days costs $2,619. Id. Of the 170,623 children who received Medi-Cal mental health services in 2002-2003, a hospitalization rate of 6% equals 10,237 children. Id. If 40% are re-hospitalized, this is an additional 4,094 children. Id. If each child was hospitalized for only three days (and many are hospitalized for far longer), the total is $37,535,382. Id.

46 Little Hoover Commission, supra n. 16, at 26-30.

47 Id. at 47.

48 U. Cal. S.F. Child Serv. Research Grp., California Children's System of Care 2001 Evaluation Report, 14, 29-31, http://saawww.ucsf.edu/csrgweb/index2b.html (2001). This study of California's Children's System of Care, which was implemented in thirty-nine counties, found that those counties with the most community-based services experienced the greater reductions in out-of-home placement costs, with cost savings of $6.49 in federal, state and county funds for every dollar in program funding. Id.

49 Bazelon Ctr. On Mental Health L., Covering Intensive Community-Based Child Mental Health Services Under Medicaid, http://www.bazelon.org/issues/children/publications/index.htm (Apr. 2001) (overview and issue briefs summarizing service descriptions, research findings and states' coverage of behavioral aides, intensive in-home services, child respite care, after-school programs, therapeutic summer camps and therapeutic nurseries/preschools) [hereinafter Intensive Community-Based Child Mental Health Services].

.

50 Id. The notes to the Bazelon Issue Brief explain that "[t]erms used in the research literature to describe these staff positions vary, and include mentors, behavioral or therapeutic aides." Id. (citing Barbara Burns, Kimberly Hoagwood and Patricia Mrazek, Effective Treatment for Mental Disorders in Children and Adolescents, 2 Clinical Child and Family Psychol. Rev. 199 (1999); Gordon Owley and Joan Sternweis, Effectiveness of Contracted Services in Individualizing and Tailoring Mentor Programming for Children with Severe Emotional Disturbance in a Public System, http://www.fmhi.usf.edu/institute/pubs/pdf/cfs/rtc/9thproceedings/9thchap1.pdf (1997)).

51 Id. (footnote omitted).

52 See Gary LaVigna & A. Donnellan, Alternatives to Punishment: Solving Behavior Problems with Non Aversive Strategies (Irvington Publishers 1986); Gary LaVigna & Thomas Willis, Challenging Behavior: A Model for Breaking the Barriers to Social and Community Integration, 1 Positive Practices 1 (1995).

53 Bazelon Ctr. for Mental Health Law, Suspending Disbelief: Moving Beyond Punishment to Promote Effective Interventions for Children with Mental or Emotional Disorders 8, http://www.bazelon.org/issues/children/publications/suspending/ suspendingdisbelief.pdf (May 2003) (citations omitted) [hereinafter Suspending Disbelief]; see also Glen Dunlap & Donald Kincaid, The Widening World of Functional Assessment: Comments on Four Manuals and Beyond, 3 J. of Applied Behavior Analysis 365, 365–377 (2001) (functional assessment is ''a systematic process of identifying problem behaviors and the events that (a) reliably predict occurrences and non-occurrence of those behaviors and (b) maintain the behaviors across time).

54 Id. at 13 n. 34.

55 Id. at 8.

56 Federal law mandates that in developing an Individualized Education Program (IEP), the IEP team shall "in the case of a child whose behavior impedes his or her learning or that of others, consider, when appropriate, strategies, including positive behavioral interventions, strategies and supports to address that behavior." 20 U.S.C.A. § 1414(d)(3)(B)(i) (West 2005); 34 C.F.R. § 300.346(a)(2)(i) (2005). In addition, if the child's behavior has resulted in removal from school for more than 10 days, the school must conduct a "functional behavioral assessment and implement a behavioral intervention plan. 34 C.F.R. § 300.520 (b)(1)(i) (2005); see also U.S. Office of Special Education Programs (OSEP), Positive Behavioral Interventions and Supports, http://www.pbis.org/main.htm (last accessed Oct. 30, 2005).

57 Suspending Disbelief, supra n. 53; see also Ellen Callegary, The IDEA's Promise Unfulfilled: A Second Look at Special Education and Related Services for Children with Mental Health Needs After Garret F., 5 J. Health Care L. & Policy 164, 192-194 (2002).

58 Dunlap & Kincaid, supra n. 53, at 365-366.

59 Id.

60 Protection and Advoc., Inc., Positive Intervention for Serious Behavior Problems: Special Education Rights and Responsibilities ch. 5 (9th rev. ed., CASE & PAI 2003), http://www.pai-ca.org/pubs/504501.pdf.

61Decl. of Dr. Frank Marone, Ph.D., ¶ 23 (Jun. 16, 1998).

62 Id. at ¶ 29.

63 Id. at ¶ 24.

64 See Olmstead Planning, supra n. 32; see also Emily Q, 208 F. Supp. 2d at 1091 (describing relationship between behavior intervention services and wraparound).

65 John VanDenBerg, Eric Bruns & John Burchard, History of the Wraparound Process 4, http://www.rtc.pdx.edu/PDF/fpF0302.pdf (Oct. 2005); John Burchard, Eric Bruns & S.N. Burchard, The Wraparound Approach: An Overview 1 (2002) (abstracted from B. J. Burns & K. Hoagwood, Community-based Treatment for Youth, http://www.rtc.pdx.edu/nwi/WAOverview.pdf); see J.D. Burchard & R.T. Clark, The Role of Individualized Care in a Service Delivery System for Children and Adolescents with Severely Maladjusted Behavior, 17 J. Mental Health Admin. 1 (1990); see also James T. Yoe et. al., Wraparound Care in Vermont: Program Development, Implementation and Evaluation of a Statewide System of Individualized Services, 5 J. Child & Fam. Stud. 23, 33-34 (1996).

66 Sara Burchard et al., One Kid at a Time: Evaluating Case Studies and Description of the Alaska Youth Initiative Demonstration Project, iv, 17 (1993).

67 EMQ Child & Fam. Serv., Program UPLIFT, Services Report June 30, 1996- July 31, 1997, 1 (1997).

68 Id.

69 Id.

70 Id. at 2.

71 Id.

72 See Decl. of Thomas Willis, Ph.D. ¶ 10 (Jan. 13, 1999)

73 IABA, supra n. 6, at 2.

74 Student, Cal. Spec. Ed. Dec., Case No. 778 at ¶ 2.

75 IABA, supra n. 6, at 1.

76 Id. at 73-74.

77 Id. at 36.

78 Id. at 38.

79 IABA, supra n. 6, at 20-38.

80 Id. at 46-47.

81 Id. at 64-71.

82 Decl. of Frank Marone, supra n. 61, at ¶ 14.

83 See IABA, supra n. 6, at 11.

84 Id. at 59-60.

85 Decl. of Emily Q., supra n. 13, at ¶ 15.

86 Id.

87 Decl. of Frank Marone, supra n. 61, at ¶ 21.

88 Decl. of Thomas Willis, supra n. 72, at ¶¶ 10-11.

89 Id. at ¶ 12.

90 See Schweiker v. Gray Panthers, 453 U.S. 34, 36-37 (1981); see also Wilder v. Virginia Hosp. Assn., 496 U.S. 498, 500 (1990). State participation in Medicaid is not mandatory, but once a state elects to participate, it must comply with requirements imposed both by the Act itself and by the Secretary of Health and Human Services. Id.

91 Cal. Dept. of Mental Health, Early and Periodic Screening Diagnosis and Treatment (EPSDT) Data for Fiscal Years 1993-94 through 2002-03 8-9, http://www.dmh.ca.gov/SADA/docs/Medi-Cal-TrendReport/
EPSDT%20Trends%201994-94%20through%202002-03.pdf (Oct. 2005) (3,227,282 eligible children in 2002-2003).

92 42 U.S.C.A. §§ 1396a(a)(10)(A), 1396d(a)(4)(B) (West 2005); see also Perkins, supra n. 2, at 4.

93 42 U.S.C.A. § 1396d(r)(1) (West 2005).

94 42 U.S.C.A. § 1396d(r)(5) (West 2005).

95 See generally id.

96 Memorandum at ¶ 7 (Apr. 29, 2004) (available at http://www.medi-calredesign.org/pdf/
feedback_Comments_MenHealth_EPSDT_042904b.doc).

97 CV-S-93-1782 (E.D. Cal. Mar. 20, 1995)

98 Id. (stipulation for settlement and dismissal); see also Little Hoover Commission, supra n. 16, at 19, 26 (discussing T.L. v. Belshe).

99 Id. at ¶¶ 1-2.

100 See Intensive Community-Based Child Mental Health Services, supra n. 49, at n. 3 (listing states which covered behavioral aide services in 1998, including Nebraska, New Mexico, North Dakota, Pennsylvania and West Virginia).

101 Dept. of Pub. Welfare, Commonwealth of Penn., Medical Assistance Bureau, Bulletin re: Outpatient\Psychiatric Services for Children Under 21 years of Age (EPSDT) 7 (Jan. 11, 1994).

102 See Intensive Community-Based Child Mental Health Services, supra n. 49 (according to the Bazelon Center, "behavioral-aide services can be covered under the Medicaid psychiatric rehabilitation service, as long as they are recommended by a physician or other licensed practitioner and furnished to improve or maintain a child's functional level or to reduce disability caused by a mental disorder.").

103 See Emily Q., 208 F. Supp. 2d 1078, 1078 (C.D. Cal. 1999) (order granting preliminary injunction).

104 Id. at 1080-1083.

105 Id.

106 Ltr. from Stephen W. Mayberg, Ph.D., Dir., Cal. Dept. of Mental Health, to Local Mental Health Dir.s, Program Chiefs, Adminstr.s, County Admin. Officers, and Chairpersons, Local Mental Health Bd.s, DMH Ltr. No.: 99-03; Therapeutic Behavioral Serv. 12 (July 23, 1999) (available at http://www.dmh.cahwnet.gov/DMHDocs/docs/letters99/99-03.pdf).

107 Decl. of Carol Hood ¶ 4 (July 13 1998).

108 Ltr. from Stephen W. Mayberg, supra n. 106, at 6.

109 Id.

110 Emily Q., 208 F. Supp. 2d at 1090-1091; see Cal. Dept. of Mental Health, DMH All-County Information Notice No.: 99-09 Therapeutic Behavioral Servs. 15, http://www.dmh.cahwnet.gov/ DMHDocs/docs/notices99/99-09.pdf (June 1999) [hereinafter Cal. Dept. of Mental Health]. The Cal. Dept. of Mental Health report provides more detail about what the Dept. of Mental Health TBS aides would do:

Individualized behavioral interventions that might be provided include, but are not limited to: immediate behavioral reinforcements, time-structuring activities, inappropriate response prevention, positive reinforcement, appropriate time out strategies and cognitive behavioral approaches such as cognitive restructuring, use of hierarchies and graduated exposure. The interventions also may include support for the family's (or foster family/support system) efforts to provide a positive environment for the child or adolescent and collaboration with other members of the treatment team. Id.

111 Emily Q., 208 F. Supp. 2d at 1091.

112 See Cal. Dept. of Mental Health, supra n. 110.

113 See id. at 4-6.

114 Emily Q., 208 F. Supp. 2d at 1082.

115 The most important requirement is that the young person must be at risk of being placed in a higher level of residential care if he or she did not receive TBS or must need TBS to transition to a less restrictive setting. Because Medi-Cal mental health services in California are administered by county mental health plans, the final decision about which children would be approved is left to the local level. See Ltr. from Stephen W. Mayberg, Ph.D., Dir., Cal. Dept. of Mental Health, to Local Mental Health Dir.s, Program Chiefs, Adminstrs., County Admin. Officers, and Chairpersons, Local Mental Health Bds., DMH Ltr. No.: 99-04; Therapeutic