LEX FRIEDEN, CHAIRPERSON
NATIONAL COUNCIL ON DISABILITY

submitted for the record
to the United States Senate
Committee on Governmental Affairs
"Castaway Children: Must Parents Relinquish
Custody in Order to Secure Mental Health
Services for Their Children?"
Washington, DC

June 10, 2003

The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. It is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD is charged by Congress with monitoring federal statutes and programs pertaining to people with disabilities, and assessing their effectiveness in meeting their needs. As part of its mission, NCD provides a voice in the Federal Government and to Congress for all people with disabilities in the development of policies and delivery of programs that affect their lives.

NCD provides leadership in the disability policy arena by building on its traditions of innovation, objectivity, independence, and by transcending disciplinary boundaries to meet the changing needs of society. Influencing the Federal Government's policy process is increasingly important to NCD in the works that it undertakes and the range of arenas in which it operates. Many NCD project and program activities reflect the expectation that the work it undertakes and supports will influence or have a positive impact on the policy process, and ultimately improve the quality of life and outcomes for Americans with disabilities.

NCD believes that parents should not have to relinquish custody of their sons or daughters in order for them to receive the necessary mental health services that they need. The fact that too many parents in America have to do so is a national tragedy, and one that requires active leadership to address.

Within the past ten months, the National Council on Disability (NCD) released two reports related to today's hearing on "Castaway Children: Must Parents Relinquish Custody in Order to Secure Mental Health Services for Their Children." In September 2002, NCD released The Well Being of our Nation: An Inter-Generational Vision of Effective Mental Health Services and Supports. In May 2003, NCD released Addressing the Needs of Youth with Disabilities in the Juvenile Justice System: The Status of Evidence-Based Research.

The Well Being of Our Nation

On September 16, 2002, NCD released its report The Well Being of our Nation: An Inter-Generational Vision of Effective Mental Health Services and Supports (www.ncd.gov/newsroom/publications/2002/mentalhealth.htm), calling for fundamental reform in a mental health system in crisis. One of the most significant findings of this report is that children and youth who experience dysfunction at the hands of mental health and educational systems are much more likely to become dependent on failing systems that are supposed to serve adults. What issues lie at the heart of our national crisis for children and youth with mental health needs?

As is well document elsewhere,¹ children with severe emotional disturbance (SED) experience significant gaps between the systems of care designed to serve their needs to support them with their families and in the community. Due to the stresses of poverty, children and youth from low-income families are disproportionately represented among young people diagnosed with SED. While this labeling theoretically entitles children to a wide range of services and supports, these are often not delivered. In addition, the labeling itself may serve to reinforce a view of these children as dysfunctional, and relegate them to segregated settings. Public policy must seek to reduce this stigma while delivering supports and services (including naturalistic supports, such as mentoring, after-school programs and improved housing).

The Substance Abuse and Mental Health Services Administration (SAMHSA) estimates that 20 percent of all children from birth to 17 years of age suffer from a diagnosable mental, emotional or behavioral illness.² According to SAMHSA, approximately 7 million children had a diagnosable mental disorder in 1997. Among children and adolescents aged 9 to 17, SAMHSA estimates 2.1-4.1 million (five to 13 percent) have a mental or emotional disorder that seriously impairs their functioning in day-to-day activities.

America's youth is the human resource capital of America's future. The value of these human resources is incalculable. We cannot define or put a value on the loss incurred when today's children and youth with SED are damaged in their formative years by systems' failures to provide needed mental health care and/or special education services. For example, children who lack these services often cannot utilize the free and appropriate public education to which they are entitled under federal law. Children with unrecognized or untreated emotional disabilities cannot learn adequately at school or benefit readily from the kinds of healthy peer and family relationships that are essential to becoming healthy and productive adults.

Many young people with SED are already involved in the juvenile justice system.³ Rates of SED among youth in the juvenile justice system have been estimated at 60-70 percent. A significant percentage of the 100,000 youth detained in correctional facilities each year suffers from serious mental disorders and a commensurately large percentage suffer from addictive disorders. Seventy-five percent of the youth in the juvenile system have conduct disorders and more than half have co-occurring disorders.

According to a 1999 report by SAMHSA, when compared with adolescents having fewer or less serious behavioral problems, adolescents with behavioral problems such as stealing, physical aggression, or running away from home were seven times more likely to be dependent on alcohol or illicit drugs.

While major mental illness, such as schizophrenia is often evident only when the individual reaches the late teens or early twenties, there is little doubt that many other disorders found among the adult prison population surfaced at much younger age - and went untreated.

The failure to identify (and treat) children and youth with SED is also associated with the growing problem of teen suicides and/or suicide attempts. If properly implemented, Medicaid's Early and Periodic Screening, Diagnosis, and Treatment Program (EPSDT) should assist parents of youth with SED and school personnel in identifying their disorders, providing the appropriate treatment, and preventing suicide.

The lack of home- and community-based services has still other negative consequences. The lack accounts for unnecessary hospitalization of children and youth with SED. It also contributes to readmission. Because of a lack of services that might ease the transition from hospital to home, including respite services for their families, these children cycle back and forth between hospital and the community without ever achieving stability. In turn, unnecessary hospitalization usurps the limited resources of state mental health budgets, thus obstructing the provision of services that might have prevented institutionalization and perpetuating an unproductive cycle.

If all aspects of the system - from assessment to treatment - took into account the long-term needs of children, rather than episodic or crisis occurrence, children's needs would be described in terms of their underlying issues and in the context of their family and living situation instead of mere documentation of short-term behavior or services available. For some children, the system must be prepared to make a commitment to serve the child for their entire childhood, with easy entry and re-entry into the system. Outcome measures should reflect long-term goals - such as school attendance, living at home with family or independently, and working at a job.

Missed Opportunities for Prevention

Individuals with Disabilities Education Act: IDEA has long been the primary vehicle for securing mental health services and supports for children and youth with mental, emotional or behavioral disorders. The Act's basic tenet is that, until age 21, children and youth are entitled to "a free and appropriate public education." Under IDEA, children with emotional or behavioral disorders that interfere with their ability to learn are entitled to special education services, including any related mental health services and supports that enable them to benefit from their education. Yet despite the intent of this strong federal entitlement, parents and advocates report that children are not receiving many of the promised and needed services. Children and youth with emotional and behavioral disabilities are the least likely to receive the services and supports mandated by IDEA.

The 1997 IDEA amendments mandated that school systems provide two new services to address the needs of children and youth with behavioral problems that interfere with their learning or the learning of those around them. Schools must conduct "functional behavioral assessments" (FBA) to determine the causes of undesirable behavior and develop "positive behavioral interventions and supports" (PBIS) to address them. According to Robert Horner, Ph. D., of the University of Oregon faculty,

"research conducted over the past 15 years has demonstrated the effectiveness of strategies that foster positive behavior for individual students and for entire schools. Even schools with intense poverty, a history of violence and low student skills have demonstrated change in school climate when effective behavioral systems have been implemented."⁴

Despite this history of success, parents and school personnel report that schools are not implementing the provisions of the 1997 IDEA amendments. Some profess they don't understand the statute; others are ignoring or actively subverting the law. In almost all cases, it is apparent that school personnel are unaware of how effective (and relatively inexpensive) these interventions can be.

EPSDT and Medicaid: Medicaid-eligible children should also benefit from the early screening required under Medicaid's EPSDT mandate and a generally broader array of services in state Medicaid plans than is available in the private sector. Under EPSDT, all states must screen Medicaid-eligible children, diagnose any conditions found through a screen and then furnish appropriate medically necessary treatment to "correct or ameliorate defects and physical and mental illness and conditions discovered by the screening services."⁵

Children and youth up to age 21 have a broader entitlement than adults who qualify for Medicaid. For adults, some services are mandatory, but some need only be provided at a state's option. A state will list its "optional" services in its Medicaid plan, but must make available to children all services listed in federal Medicaid law "whether or not such services are covered under the state plan."⁶ Few states have good tools to identify children with mental health needs and most fail to monitor providers or health plans to ensure that children receive behavioral health screens.

Medicaid's EPSDT program, especially when used in conjunction with IDEA, is the ideal vehicle for meeting the comprehensive mental health needs of children and youth. The program requires that states conduct regularly scheduled examinations (screens) of all Medicaid-eligible children and youth under age 22 to identify physical and mental health problems. If a problem is detected and diagnosed, treatment must include any federally-authorized Medicaid service, whether or not the service is covered under the state plan. If problems are suspected, an "inter-periodic" screen is also required so the child need not wait for the next regularly scheduled checkup.

Child mental health services under Medicaid have undergone considerable change over the past decade. For many years, states had included more comprehensive mental health benefits for adults than for children and youth. After the enactment of legislation requiring coverage of all Medicaid-covered services for children through the EPSDT mandate in 1990, states began revising their rules and expanding coverage of child mental health services.

Shortly after these revisions began to occur, states also began to move the Medicaid population in need of mental health care into managed care, generally into separate "carved-out" specialized managed behavioral health care plans. By 1998, fifty-four percent of Medicaid beneficiaries were enrolled in managed care programs.⁷ (Health Care Financing Administration, 1998). Due to the rapid expansion of covered services early in the 1990s and the subsequent introduction of managed care, it is pertinent to question whether children and youth actually receive these community-based services and to determine the patterns of service use. Key stakeholders continue to cite the lack of attention to the special needs of children and youth as the most serious problem with the public mental health system.⁸

By offering waivers and options Medicaid law also affords states other policy choices that could expand access to mental health services. The home-and community-based waiver allows states to provide alternatives to hospitalization to children with disabilities, including children and youth with SED. The waiver allows states to provide various community support services, but only three states have availed themselves of this waiver for children with SED. Significantly, however, a recent study indicates that the Medicaid home-and community-based waiver is effective in reducing the incidence of custody relinquishment and institutional placement in the three states where they are in use.⁹

However, Medicaid does not cover all low-income and other children and adolescents who have no access to mental health treatment. Moreover, while the array of covered services is fairly broad, some home- and community-based services are still excluded from coverage under many state Medicaid programs.

Denial and Inaccessibility of Services

Despite the IDEA and EPSDT entitlements, children and youth in many states fall through the cracks of the public systems of care. This happens even in states like California, with well-developed local government infrastructure:

"Despite the integrity of individual programs-and even with the extraordinary contributions of so many individual professionals-incremental efforts add up to less than the sum of their parts. The programs often fall short of providing the right services, in the right way, to the right children at the right time. Year after year, new commitments-even with additional funding-fail to achieve the goals so desperately desired."¹⁰

Services are often denied not out of malice, but because of the lack of coordination among systems of care and complexity of funding arrangements:

"Funding is restricted by complex rules that encourage communities to forsake those in the path of danger and focus only on those children who are physically bruised and emotionally broken."¹¹

Moreover, the criteria that youth must meet before they can receive services can easily be interpreted to deny services.¹² In practice, many states do not have specific definitions of all covered services, so it is likely that many Medicaid-eligible children receive neither the mental health screens nor the mental health treatment to which they are entitled by EPSDT.¹³ The shortage of knowledgeable legal advocates virtually ensures that the rights of many children to EPSDT services will not be enforced.

Access to services is limited due to lack of insurance coverage for mental health services and inadequate access to the special education and related mental health services for which children and youth are eligible through IDEA. For example, ten million children and youth lack health insurance and many more are under-insured for mental health treatment and exhaust their benefits. An estimated 30 percent (3 million) of those 10 million are eligible for Medicaid, but their families are unaware that they qualify.¹⁴

As states have sought to "do more with less," they have also sought out managed care approaches to limiting Medicaid expenditures. Instead of bridging the gap between child-serving agencies, however, states' shift of Medicaid to managed care has stranded even more children with serious mental health needs.¹⁵

Tragic Consequences for Children, Youth and Society

Custody Relinquishment: Due to lack of community-based services and/or special education services, families of children with SED are often faced with the heart-wrenching choice of not receiving adequate mental health services for their children or relinquishing custody of their children in order to qualify for Medicaid. Child mental health advocates and professionals have recognized the issue of custody relinquishment for many years.¹⁶

Requiring families to give up custody:

• traumatizes both children and parents;
  
• limits family involvement in key decisions about their children's mental health, health and educational needs;
  
• undermines family integrity;
  
• unnecessarily burdens public agencies with children who are neither abandoned nor neglected, but whose families need services and support to raise them at home;
  
• penalizes families for the state's failure to develop adequate services and supports.

Requiring families to relinquish custody to the child welfare system in order to obtain essential mental health services and supports for their children wastes public funds and destroys families.

Inadequate funding of mental health services and supports for children and their families is the major reason families turn to the child welfare system for help. Private insurance plans often have limits on mental health benefits that can be quickly exhausted if the child has serious mental health needs. In addition, many private plans do not provide the home and community based services and supports that are needed to keep children at home. When their personal funds run out, families are forced to turn to the child welfare system.

Even families whose children are eligible for Medicaid face custody relinquishment. Although many of the needed services are covered, states fail to adequately define their rehabilitation services, to educate providers on how to bill for those services, or to make sure that Medicaid recipients know the array of services to which a child is entitled. When parents then turn to the child welfare agency, the agency often requires - as a non-negotiable condition for obtaining those services - relinquishment of custody to the state or county. In large part, this is driven by the child welfare agencies' mistaken belief that custody is required in order to draw federal matching funds under the Social Security Act.

Educational System/Special Education/Discipline: Due to the stresses of poverty, children and youth from low-income families are disproportionately represented in the young population with SED. The inequities of the neglect of these children by schools and the public mental health system are further compounded by racial discrimination.

The failure to provide early screening and mental health services has meant that as many as 35 percent of students entering school are considered to be at high risk for social and academic failure.¹⁷ Once in school, the failure or refusal to provide IDEA services results in much greater drop-out rates for children and youth with SED.¹⁸ This has led researchers to recommend a new approach to screening, and to identifying a child's strengths rather than deficits.

In perhaps the classic attempt to blame the victim, school districts' failure or refusal to provide preventive services under IDEA has also led, inexorably, to treating children with SED as "discipline problems." In a series of attempts to amend the IDEA over the past three years, Congress has increasingly expanded the authority of school districts to exclude such children and youth from mainstream classrooms.

The techniques for supporting children with SED-known broadly as "positive behavioral supports" - in school are well documented.¹⁹ The use of punishment to correct behavior comes with negative consequences such as negative attitudes on the part of students toward school and school staff (which leads to increased antisocial acts and behavior problems). Punishment of children with SED is strongly correlated with dropping out of school.²⁰

Foster care: The child protective services and foster care system in the United States grew out of efforts by early religious and charitable organizations to serve orphans and "rescue" children and youth from abusive or neglectful families. Today's federally supported foster care system was created under the Social Security Act of 1935 as a last-resort attempt to protect children at risk of serious harm at home. The law obligated states to assume temporary custody of children whose parents were unable or unwilling to care for them.

By the early 1990s almost half a million children were in the custody of state child welfare systems. The U.S. Department of Health and Human Services estimated that at least one of every 10 babies born in poor urban areas in the '90s would be placed in foster care.²¹ Children with emotional or behavioral disorders made up 40 percent of the child welfare population and few resources were available for any type of treatment or support services.²² The steady increase in foster care placements is very troubling. Most children are deeply traumatized when they are separated from their families. Even when their family environment has been dangerous or unhealthy, studies have shown that a child often experiences separation from a primary care giver as a threat to survival.²³

Family disintegration and allegations of abuse are the most frequent reasons that children are placed in foster care, and these reasons are often rooted in the inability to get mental health services and support for parents and/or children.

According to the Annie E. Casey Foundation, every year 25,000 young people in foster care turn 18 and leave foster care. This means that young people in state-supervised programs must leave foster care whether or not they have the skills to maintain an apartment, seek and hold a job, or balance a checkbook. Too many 18-year-olds emerge without having had a stable foster-care environment or adequate mental-health services or a quality education. According to one recent study, 12 to 18 months after they left foster care, half of those who left were unemployed and a third were receiving public assistance. Clearly, youths who "age-out" of foster care are among the most vulnerable and the most at risk.

Juvenile Justice: Each year, more than one million youth come in contact with the juvenile justice system and more than 100,000 are placed in some type of correctional facility. Studies have consistently found the rate of mental and emotional disorders higher among the juvenile justice population than among youth in the general population. As many as 60-75 percent of incarcerated youth have a mental health disorder; 20 percent have a severe disorder and 50 percent have substance abuse problems.²⁴ The most common mental disorders are conduct disorder, depression, attention deficit/hyperactivity, learning disabilities and post traumatic stress.²⁵ According to a 1999 survey conducted by the National Mental Health Association (NMHA) and the GAINS Center, mental health problems typically are not identified until children are involved with the juvenile justice system, if at all.

Although African-American youth aged 10 to 17 constitute only 15 percent of their age group in the U.S. population, they account for 26 percent of juvenile arrests, 32 percent of delinquency referrals to juvenile court, 41 percent of juveniles detained in delinquency cases, 46 percent of juveniles in corrections institutions, and 52 percent of juveniles transferred to adult criminal court after judicial hearings. In 1996, secure detention was nearly twice as likely for cases involving black youth as for cases involving white youth, even after controlling for offenses.²⁶

Many youngsters have committed minor, nonviolent offenses or status offenses. The increase in their incarceration rates is a result of multiple systemic problems, including inadequate mental health services for children and more punitive state laws regarding juvenile offenders. These nonviolent offenders are better served by a system of closely supervised community-based services, including prevention, early identification and intervention, assessment, outpatient treatment, home-based services, wraparound services, family support groups, day treatment, residential treatment, crisis services and inpatient hospitalization.

Intensive work with families at the early stages of their children's behavioral problems can also strengthen their ability to care for their children at home. These services, which can prevent children from both committing delinquent offenses and from re-offending, are most effective when planned and integrated at the local level with other services provided by schools, child welfare agencies and community organizations.

More than one in three youths who enter correctional facilities "have previously received special education services, a considerably higher percentage of youths with disabilities than is found in public elementary and secondary schools."²⁷ Many children with emotional disorders end up in detention facilities as a result of incidents at school and/or because they fail to receive special education and related mental health services. In addition, many juveniles are released from detention facilities without appropriate discharge services, and end up being re-incarcerated.

Young people with serious emotional disturbance are punished for the failure of systems designed to protect them. Because schools fail to identify and serve youth with serious emotional disorders (SED), these children miss out on much or all of the "free and appropriate public education" to which they are entitled under the federal Individuals with Disabilities Education Act (IDEA), even though IDEA funds services for such children.²⁸

Although IDEA requires educational plans to be in place prior to a young person's release from juvenile detention, and a well-designed and implemented plan, coupled with connections to the services provided under Medicaid, can mean the difference between a successful transition to home and community or a repeat of the negative cycle that landed the juvenile in detention in the first place, few states implement this requirement. Thus, juvenile offenders with SED frequently fail to reconnect with the education system upon their release.

Without the appropriate intervention, students whose behavior could and should be addressed in school are ending up in juvenile detention. Each year over 100,000 youth are detained in correctional facilities. These institutions have been called the "de facto" psychiatric institutions for adolescents with mental health problems because they substitute incarceration for needed treatment. A recent survey by the Pittsburgh Post-Gazette found that 80 percent or more of the residents of Pennsylvania's juvenile detention centers had a diagnosable psychiatric problem. Arkansas and New Mexico reported that 90 percent of their juvenile detainees were on psychotropic medication.

Effects of Welfare Reform: In the implementation of welfare reform, policy makers have, to date, focused rather narrowly on the needs of the adult recipients. In particular, reform efforts have concentrated on recipients who are relatively well-positioned to enter the workforce, that is, who do not have evident disabilities or special needs. States have declared remarkable success in their initial efforts to reduce welfare rolls, moving off welfare large numbers of individuals and capitalizing on the current demand for workers. Now, states are beginning to face some unanticipated consequences of return-to-work policies particularly on adults with significant problems (such as those who have mental health and substance abuse issues) and on parents whose children have special needs. States are facing the reality that there is a residual population of welfare recipients whose capacities to work are challenged by these problems.

What might easily be overlooked in the debate on welfare reform is that the children of welfare recipients - both those who have already been counted as "successes" and those remaining on welfare due to special needs - may, themselves, have significant problems. Recipients who have successfully returned to work may have marginal work skills and find themselves in low-level jobs. When they have children with serious emotional disturbance, they may be confronted with parental demands that pull them away from already-precarious work situations. For example, school systems are often ill prepared to deal with special-needs children and seek to exclude them from the classroom. Child care centers are often not prepared to handle children with significant behavioral problems and these children may be expelled, creating significant job-related problems for the parent.

Those welfare recipients who have not yet entered the workforce include significant numbers of individuals with significant problems of their own, such as depression, post-traumatic stress disorder, and chemical dependency. These problems among parents have been identified as risk factors for serious emotional disturbance among their children. The movement of these adults into the workforce, which is already a formidable goal, may pose new problems for their high-risk children. For example, children with serious emotional disturbance who have been reliant on parental care and supervision within the home may, for the first time, be entering child care arrangements outside of the home. These settings must be prepared to offer special approaches appropriate to the needs of these children. In addition, it is likely that the work-place success of recipients who are already struggling to overcome their own problems will be compromised by the added stress of disruptions in their children's functioning.

This array of factors suggests that the special needs of children do not simply co-exist with welfare reform; parental return-to-work has both an effect upon these children and is affected by these children. However, few policies thus far have considered the interaction of welfare reform and recipients' children with serious emotional disturbance. Most states have not worked to ensure that the needs of these children are addressed. As the policy and legislative focus comes to be redirected to the hardest to serve welfare recipients (which may well include a significant number of parents of children with special needs), the well being of children will increasingly come to be an issue.

Psychiatric Hospitalization and Residential Care: Traditionally, the mental health services available to children with SED have tended to fall at two ends of a continuum: 1) treatment in a residential facility and 2) individual, usually once-a-week therapy. Yet youth with SED need one or more of a broad spectrum of therapeutic modalities between these two poles. These include ongoing intensive services in their home community and school. Additionally, their families need support services, education and training on how to best handle the youngster and his or her problems.

In many cases, the lack of home-and community-based mental health services results in unnecessary institutionalization. Deprived of services, the condition of many children and youth with SED worsens and reaches crisis proportions, leaving commitment to a residential treatment facility as the only option. Though residential treatment centers lack studies supporting their effectiveness, this treatment - which serves a small percentage of youth - consumes one-fourth the outlay on child mental health.²⁹ Referrals to residential treatment facilities - often unnecessary - remove the child far from home and community; sometimes out of the county or even the state for extended periods of time. Moreover, after leaving the hospital, the lack of transitional services and/or intensive in-home services and supports frequently results in children and adolescents cycling from home to hospital and back again without ever achieving stability.

However, effective home- and community-based services - such as in-home services, behavioral aides, intensive case management, day treatment, family support and respite care, parent education and training, and after-school and summer camp programs - do exist. Of these services, the Surgeon General's report found home-based services and therapeutic foster care to have the most convincing evidence of effectiveness.³⁰ These services are furnished in partnership between professionals and families, are clinically and fiscally flexible, and individually tailored for each child and family, providing whatever intensity of service is needed. Home- and community-based services build on strengths and normal development needs rather than just focus on problems, and provide continuity of care. They strive to be culturally competent and involve the family in the child's care. Evaluations of these community-based services have found them to be highly effective, less costly than the alternative residential services and much preferred by families.³¹

Delinquency Prevention and Juvenile Justice

On May 1, 2003, NCD released a research study entitled Addressing the Needs of Youth with Disabilities in the Juvenile Justice System: The Status of Evidence-Based Research (www.ncd.gov/newsroom/publications/2003/juvenile.htm). The report evaluates the emerging status of key policies and programs that affect children and youth with disabilities who have often been overlooked by service and research programs.

The issues of delinquency prevention and juvenile justice as they relate to children and youth with disabilities are relatively new for policymakers, yet they present some of the most complex and challenging problems that policymakers must grapple with and resolve.

Over the past several years, NCD has recognized that children and youth with disabilities have increasingly become overrepresented in the juvenile justice system. A significant proportion of youth in the juvenile justice system have education related disabilities and are eligible for special education and related services under the Individuals with Disabilities Education Act (IDEA). Factors associated with the disproportionate representation of youth with disabilities in juvenile corrections are complex - but the available information suggests that school failure, poorly developed social skills, and inadequate school and community supports greatly increase the risks for arrest and incarceration. NCD believes, therefore, that delinquency prevention is a critical feature of any service or support system that is used to address the needs of all youth, especially youth with disabilities and special education needs.

The major recommendations NCD makes are to:

• Identify a range of strategies to enforce and promote compliance with federal disability law as it relates to children and youth with disabilities who are at risk of delinquency. The strategies should include those that increase effective programming for youth with disabilities in schools and in juvenile justice settings.
  
• Increase funding and/or resources to schools and the juvenile justice system to ensure that youth with disabilities receive appropriate services.
  
• Designate a single federal agency whose sole focus is to ensure that the rights and needs of youth with disabilities entering or in the juvenile justice system are addressed. The Coordinating Council on Juvenile Justice and Delinquency Prevention and the President's Task Force on Disadvantaged Youth may be well-suited to provide the direction and leadership to address this gap by helping to create a national commission focused explicitly on youth with disabilities at risk of entering or already in the juvenile justice system.
  
• Conduct research that focuses on establishing the true prevalence of youth with disabilities of different types among at-risk populations in schools and across all stages of the juvenile justice system; the needs/services gap, including compliance with disability law; the causes of overrepresentation, where it exists, of youth with disabilities in the juvenile justice system, especially correctional facilities; and effective systems level and program level approaches, including federal laws, for addressing the needs of these youth, including particular attention to the types of programming most effective for youth from diverse racial/ethnic and cultural backgrounds.
  
• Undertake a comprehensive assessment to determine what programs and policies are most effective in schools, communities, and the juvenile justice system. At the same time, ensure that there is a balanced approach to funding diverse programs and policies, coupled with evaluation research studies of their effectiveness. Such an approach will ensure that a more definitive body of knowledge can develop to determine "what works" and for whom.

Without a clear understanding of what works, communities can become awash in a maze of programs and services that claim effectiveness in deterring delinquency yet have no factual information or evidence supporting their effectiveness. NCD believes that policy makers can use the findings and recommendations from this research study to help shape the scope and direction of future federal initiatives designed to tackle delinquency prevention and juvenile justice. Such initiatives fall under the purview of the Department of Education and the Department of Justice.

NCD's study findings on the status of, and need for, improved, evidence-based research in the area of juvenile justice are consistent with those of two other federal level agency research endeavors, namely, the President's Mental Health Commission and the General Accounting Office (GAO).

In an April 3, 2003, draft outline of a final report from the President's Mental Health Commission, Goal No. 4 states: "Adults with serious mental illness and children with serious emotional disturbance will have ready access to the best treatments, services, and supports leading to recovery and cure. Accelerate research to enhance prevention of, recovery from and ultimate discovery of cures for mental illnesses." Recommendation No. 4 states: "Evidence-based practice interventions should be tested in demonstration projects with oversight by a public-private consortium of all stakeholders. The results of those demonstrations should form the basis for directing support of financing, dissemination and workforce development."

In an April 15, 2003, report Child Welfare and Juvenile Justice, officials in the states GAO visited identified practices that they believe may reduce the need for some child welfare or juvenile justice placements. These practices included finding new ways to reduce the cost of or to fund mental health services, improving access to mental health services, and expanding the array of available services. GAO reported, however, that few of these practices have been rigorously evaluated.

Conclusion

All too often, when it comes to addressing the needs of too many children and youth with mental health needs in this country, the human services system in this country is in crisis. For decades, state mental health systems have been burdened with ineffective service-delivery programs and stagnant bureaucracies.

At the same time, the complementary systems established to support children with mental health needs and their families (i.e., special education, welfare, juvenile justice) are themselves unable to operate efficiently and effectively individually, and together, on behalf of some of the most vulnerable members of society.

There is no single antidote for the current dysfunction of these service systems. Clearly, visionary leadership, adequate funding and meaningful collaboration are essential ingredients. More than these, however, there needs to be a dramatic shift in our aspirations for children and youth with mental health needs and their families.

What is most needed now is a dramatically new vision of what children and youth with mental health needs can achieve, if given the supports they need to succeed. That vision must start with the premise that family should not have to relinquish custody of their sons or daughters for the same level of adequate support and services. The vision must also include an emphasis on public funding and utilization of what works with children and youth, as well as with their families. A third component of this vision requires a commitment to fund effective supports and services and to fund enforcement of the rights guaranteed under the Individuals with Disabilities Education Act, Medicaid, TANF, and other federal statutes.

The Federal Government can play an important role in establishing funding and other incentives for state human service systems to adopt new models that support this vision and that are consistent with President Bush's New Freedom Initiative.

¹ National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves, available at www.ncd.gov/newsroom/publications/2000/privileges.htm#5, at Chapter 5; Bryant, E. S., Rivard, J. C., Addy, C. L., Hinkle, K. T., Cowan, T. M., & Wright, G. (1995). Correlates of major and minor offending among youth with severe emotional disturbance. Journal of Emotional and Behavioral Disorders, 3 (2), 76-84.

² Mental Health Needs Of Many U.S. Children Going Unmet, available at http://www.pslgroup.com/dg/4D1FA.htm.

³ See, e.g., Children's Defense Fund, Quick Facts: Mental Health and Juvenile Justice (CDF), at http://www.childrensdefense.org/ss_jjfs_menthlthjj.php.

⁴ Warren, J.S., Edmonson, H.M., Turnbull, A.P., Sailor, W., Wickham, D. & Griggs, P. (in press), School-wide Application of Positive Behavioral Supports: Implementation and Preliminary Evaluation of PBS in an Urban Middle School.

⁵ 42 U.S.C. §1396d(a).

⁶ Social Security Act, Section 1905(r)(5). See also, Omnibus Budget Reconciliation Act, 1989, Public Law 101-239.

⁷ http://www.hcfa.gov/medicaid/trends98.pdf

⁸ Stroul, B.A., Pires, S.A., Armstrong, M.I., and Meyers, J.C. (1998). The impact of managed care on mental health services for children and their families. The Future of Children: Children and Managed Health Care, 8, 119-133.

⁹ Bazelon Center for Mental Health Law, Relinquishing Custody, The Tragic Result of Failure to Meet Children's Mental Health Needs. (Mar. 2000).

¹⁰ Little Hoover Commission, Young Hearts & Minds: Making a Commitment to Children's Mental Health, at iv (Report #161, October 2001), available at http://www.lhc.ca.gov/lhcdir/report161.html.

¹¹ Id.

¹² For example, to qualify for special education, the child's mental disorder must affect educational performance to a marked degree and over a long period of time. The child must also exhibit one or more of the following characteristics:

• 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 types of behavior or feelings under normal circumstances;
• a general pervasive mood of unhappiness or depression ; or
• a tendency to develop physical symptoms or fears associated with personal or school problems.

¹³ Bazelon Center for Mental Health Law, Making Sense of Medicaid for Children with Serious Emotional Disturbance (1999).

¹⁴ The Kaiser Commission on the Future of Medicaid. Medicaid's role for children. Medicaid Facts. Washington, DC (1997).

¹⁵ Bazelon Center for Mental Health Law, Managed Behavioral Health Care for Children and Youth: A Family Advocate's Guide (1996).

¹⁶ Jane Knitzer first identified it in a ground-breaking 1978 study and elaborated on it in a 1982 publication, Unclaimed Children: the Failure of Public Responsibility to Children and Adolescents in Need of Mental Health Services. Several later studies confirm Knitzer's findings.

• The Research and Training Center on Family Support and Children's Mental Health found that 25 percent of parents whose children have SED received suggestions that they relinquish custody. One third of those parents receiving the suggestion gave up custody in order to get services.
• The Commonwealth Institute for Child and Family Studies conducted a survey of 45 states. In 28 states (62 percent), at least one agency used custody transfer to gain access to state funding for services for children with serious emotional and behavioral problems. Thirty-eight (32 percent) of the responding child-serving agencies used custody transfer to obtain funding for children's treatment.
• A 1999 Bazelon Center study found that this problem continues to be pervasive in approximately half of the states. The fear of coerced relinquishment is so widespread that a major family advocacy organization, the Federation of Families for Children's Mental Health, identifies this problem as one of its current top priority areas.
• The National Alliance for the Mentally Ill surveyed parents of children with mental and emotional disorders and found nearly one-fourth of them had been told by public officials that they needed to relinquish custody to get needed services for the children.

¹⁷ Ruth Goldman, Model Mental Health Programs and Educational Reform, American Journal of Orthopsychiatry, (1997) p. 347.

¹⁸ ABC Project, Staying in School: Strategies for Middle School Students with Learning and Emotional Disabilities (1995), at p. 1: "Nationally, 35 percent of students with learning disabilities and 55 percent of students with emotional disabilities drop out of school as compared to about 25 percent of students without disabilities."

¹⁹ Among the most recognized of these are to:

• Personalize instruction through accommodating different learning styles and abilities;
• Create leadership opportunities for less-popular students (such as appointing as class helpers) ;
• Give student alternatives (such as self-imposed time-outs, relaxation techniques);
• Try to eliminate conditions that lead to reactive misbehavior (such as teasing from other students).

²⁰ Id. at 5.

²¹ "Proposal to Preserve the Family," Associated Press, The Wenatchee (Alabama) Daily World, May 24, 1993.

²² Mental Health Law Project (now Bazelon Center for Mental Health Law), The R.C. Case: Creating a New System of Care for Children, 1991.

²³ Firman, C., On Families, Foster Care, and the Prawning Industry, Family Resource Coalition Report, No. 2, 1993.

²⁴ Cocozza, J.J. (ed.) Responding to Youth With Mental Disorders in the Juvenile Justice System. Seattle, WA, The National Coalition for the Mentally Ill in the Criminal Justice System, 1992.

²⁵ Garfinkel, Lili F., Unique Challenges, Hopeful Responses: A Handbook for Professionals Working with Youth with Disabilities in the Juvenile Justice System, PACER Center, 1997.

²⁶ 1999 National Report Series, Juvenile Justice Bulletin.

²⁷ "Special Education in Correctional Facilities," by the National Center on Education, Disability and Juvenile Justice (1990).

²⁸ Almost always for want of special education services, 55 percent of children with SED drop out - more than twice the rate of other students in the general population. Nearly 20 percent of students with SED have been arrested, compared with an arrest rate of nine percent for all students with disabilities. As these children age and leave school without adequate preparation or skills, the arrest rate climbs. Of youngsters with SED out of school for two years - more than a third had been arrested. By the time they had been out of school for five years, more than 70 percent had been arrested.

²⁹ U.S. Department of Health and Human Services. Mental Health: A Report of the Surgeon General (1999), at Chapter 3.

³⁰ Id.

³¹ Hyde, K. L., Burchard, J. D. & Woodworth, K. (1996). Wrapping services in an urban setting. Journal of Child and Family Studies, 5, 67-82; Yoe, J. T., Santarcangelo, S., Atkins, M. & Burchard, J. D. (1996). Wraparound care in Vermont: Program development, implementation, and evaluation of a statewide system of individualized services. Journal of Child and Family Studies, 5, 23-38.