TESTIMONY OF THE NATIONAL COUNCIL ON DISABILITY

submitted for the hearing record of the
U.S. Senate Committee on Governmental Affairs
"Juvenile Detention Centers:
Are They Warehousing Children with Mental Illness"

Washington, DC
July 7, 2004

The National Council on Disability (NCD) is an independent federal agency with the responsibility for making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD's overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

In light of your recent hearing on "Juvenile Detention Centers: Are They Warehousing Children with Mental Illness?" and for the record, we offer the following research information. One of the most challenging issues that NCD has focused its policy work on has involved mental illness and juvenile justice. NCD's work that informs the issue before the Senate Committee on Governmental Affairs includes: (a) the Executive Summary and Chapter 3 on Youth from "The Well Being of Our Nation: An and (b) the Executive Summary from Addressing the Needs of Youth with Disabilities in the Juvenile Justice System: Status of Evidence-based Practices ."

The excerpted material NCD is submitting for your July 7th hearing record is contained on the following pages.

The Well Being of Our Nation:
An Inter-Generational Vision of Effective
Mental Health Services and Supports
National Council on Disability
September 16, 2002

Executive Summary

At a time when more is known about mental illnesses than at any other time in history and just three years after the U.S. Supreme Court held that unnecessary institutionalization violates the Americans with Disabilities Act, public mental health systems find themselves in crisis, unable to provide even the most basic mental health services and supports to help people with psychiatric disabilities become full members of the communities in which they live.

This report does not aim to be a comprehensive review of all that is known about public mental health and its shortcomings. That undertaking has been begun by the U.S. Surgeon General, in the massive 1999 report entitled Mental Health: A Report of the Surgeon General , and will be carried on with President Bush's New Freedom Commission on Mental Health, which held its first public hearings in July 2002. Rather, this report examines some of the root causes of the crisis in mental health, and seeks to "connect the dots" concerning the dysfunction of a number of public systems that are charged with providing mental health services and supports for children, youth, adults and seniors who have been diagnosed with mental illnesses.

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. In parallel fashion, adults whose mental health service and support needs are not fulfilled are very likely to become seniors who are dependent on failing public systems of care. In this fashion, hundreds of thousands of children, youth, adults and seniors experience poor services and poor life outcomes, literally from cradle to grave.

There is no single antidote for the current dysfunction of the public mental health system. Clearly, visionary leadership, adequate funding and expansion of proven models (including consumer-directed programs) are essential ingredients. More than these, however, there needs to be a dramatic shift in aspirations for people with psychiatric disabilities.

Public mental health systems must be driven by a value system that sees recovery as achievable and desirable for every person who has experienced mental illness. Systems also must commit to serving the whole person, and not merely the most obvious symptoms. In other words, mental health systems will have to develop the expertise to deliver not just medication and counseling, but housing, transportation and employment supports as well.

There are proven models of success throughout the country, but entrenched forces and stale thinking have prevented them from "going to scale" to serve more people with psychiatric disabilities. Some such models are referenced throughout the report, and Chapter 6 provides a menu of concrete actions to bring about a new vision of public mental health services and supports.

Chapter 3
Impact on Children and Youth

1. Crisis Focus

As is well documented elsewhere,⁽¹⁰⁾ children with emotional disturbance experience significant gaps between the systems of care designed to serve their needs and 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 emotional disturbance. 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.⁽¹¹⁾

According to SAMHSA, approximately 7 million children had a diagnosable mental disorder in 1997. Between 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 emotional disturbance are damaged in their formative years by systems' failures to provide needed mental health care and/or special educational 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 emotional disturbance are already involved in the juvenile justice system.⁽¹²⁾ Rates of emotional disturbance 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 disabilities 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 disabilities.

According to a 1999 report by Substance Abuse and Mental Health Services Administration, 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 disabilities found among the adult prison population surfaced at a much younger age--and went untreated.

The failure to identify (and treat) emotional disturbances is also associated with the growing problem of teen suicides and/or suicide attempts. If properly implemented, Medicaid's EPSDT screening program should assist parents of youth with emotional disturbance and school personnel in identifying their disabilities, 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 emotional disturbance. It also contributes to readmission. For 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

Poor treatment by the system as a child or youth increases the likelihood of encountering other dysfunctional systems as an adult. Children with serious emotional disturbance have the civil right to receive services in the most integrated setting appropriate to their needs.⁽¹³⁾ They further have the human right to be raised in their families and communities, with their individual needs guiding the service array provided. These civil and human rights are embodied in the Americans with Disabilities Act (ADA).⁽¹⁴⁾

The failure to identify and treat mental disabilities between children and youth has serious consequences, including school failure, involvement with the justice system and other tragic outcomes. As outlined in the Adult chapter, below, adults with mental illnesses who find themselves in the criminal justice system are significantly more likely to have grown up in foster care, under custody of a public agency or in an institution.

There are large discrepancies between the mental health needs of children and youth and the services they actually receive. A recent study found that only one in five children with emotional disturbance used any mental health specialty services, and a majority received no mental health services at all. This is consistent with an earlier finding by the Office of Technology Assessment (OTA) which estimated that only 30 percent of the 7.5 million children who needed mental health treatment received it. However, children with serious emotional disturbance often do not receive the services to which they are entitled under the Individuals with Disabilities Education Act (IDEA).

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 disabilities. 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 disabilities 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."

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 the Medicaid's Early Periodic Screening, Diagnosis and Treatment (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."⁽¹⁵⁾

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."⁽¹⁶⁾ 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 Early Periodic Screening Diagnosis and Treatment (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, 54 percent of Medicaid beneficiaries were enrolled in managed care programs.⁽¹⁷⁾
(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.⁽¹⁸⁾

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 emotional disturbance. The waiver allows states to provide various community support services, but only three states have availed themselves of this waiver for children with emotional disturbance. 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.⁽¹⁹⁾

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."⁽²⁰⁾

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."⁽²¹⁾

Moreover, the criteria that youth must meet before they can receive services can easily be interpreted to deny services.(22) 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. 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.⁽²³⁾

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.⁽²⁴⁾

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 emotional disturbance 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.⁽²⁵⁾

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; and
• 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 support 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 nonnegotiable 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 emotional disturbance. 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.⁽²⁷⁾ Once in school, the failure or refusal to provide IDEA services results in much greater drop out rates for children and youth with emotional disturbance.⁽²⁸⁾ 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 that have failed or refused to provide preventive services under IDEA has also led, inexorably, to treating children with emotional disturbance 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 emotional disturbance--known broadly as "positive behavioral supports"--in school are well documented.⁽²⁹⁾ 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 emotional disturbance is strongly correlated with dropping out of school.⁽³¹⁾

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 and 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.⁽³²⁾

Children with emotional or behavioral disabilities made up 40 percent of the child welfare population and few resources were available for any type of treatment or support services.⁽³³⁾ 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.⁽³⁴⁾

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. These findings are documented more fully in the Custody Relinquishment section, above, and are considered further in the Adult chapter, below.

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 disabilities 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.⁽³⁵⁾

The most common mental disabilities are conduct disorder, depression, attention deficit/hyperactivity, learning disabilities and posttraumatic stress.⁽³⁶⁾ 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 age 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 whites, even after controlling for offenses.⁽³⁷⁾

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."⁽³⁸⁾

Many children with emotional disturbance 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 emotional disturbance are punished for the failure of systems designed to protect them. Because schools fail to identify and serve youth with emotional disturbance, 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.⁽³⁹⁾

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 emotional disturbance 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 includes 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 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 workplace 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 coexist 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 emotional disturbance 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 emotional disturbance 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 emotional disturbance 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.⁽⁴⁰⁾

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 result 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.⁽⁴¹⁾

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 focusing 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.⁽⁴²⁾

[Note: The report is at http://www.ncd.gov/newsroom/publications/2002/mentalhealth.htm ]

Addressing the Needs of Youth with Disabilities in the Juvenile Justice
System: The Current Status of Evidence-Based Research
National Council on Disability
May 1, 2003

Executive Summary

Overview

This report summarizes and assesses the state of knowledge about children and youth with disabilities who are at risk of delinquency and involvement in, or who have already entered, the juvenile justice system. By highlighting what is known about addressing delinquency and the diverse needs of this population, it aims to inform policy discussions among policymakers, practitioners, and researchers. The report's specific objectives are to examine

• current laws and philosophical frameworks affecting children and youth with disabilities who are at risk of delinquency or are involved in the juvenile justice system;
• the relationship between disability, delinquency, and involvement in the juvenile justice system;
• the factors associated with disability and delinquency;
• current and anticipated delinquency- and disability-related programming targeting children and youth with disabilities who may enter or who are in the juvenile justice system;
• the effectiveness of prevention, intervention and treatment, and management strategies for reducing delinquency and addressing disability-related needs among this population of children and youth;
• barriers and facilitators to implementing effective strategies for helping these children and youth; and
• recommended "next steps" for increasing the scope and quality of knowledge and practice for reducing delinquency among and addressing the disability-related needs of at-risk children and youth with disabilities.

To achieve these objectives, the report provides a systematic, multidimensional review of existing research and includes insights provided by service providers, administrators, policymakers, advocates, and researchers. The report examines a range of interrelated issues to establish a broad-based foundation a portrait of the "forest" for understanding what is and is not known about children and youth with disabilities who are at risk of delinquency or juvenile justice involvement or are already involved in the justice system.

The term "delinquency" here refers to violations of law by individuals legally defined as "juveniles." Typically, state laws use specific age ranges (e.g., 10 to 17) as the sole criterion for determining whether an individual is a "juvenile" and thus subject to processing in the juvenile rather than adult justice system. Violations include status offenses (i.e., acts, such as running away from home or truancy, that only youth, by dint of their "status" as juveniles, can commit) and nonstatus offenses (i.e., acts, such as robbery and theft, that would be crimes if committed by adults). For the purposes of this report, a youth is delinquent if he or she has committed a status or nonstatus offense, whether or not the offense results in a referral to court. Youth who are "involved in the juvenile justice system" can include individuals in short-term detention, probation, long-term secure custody, residential treatment facilities, and aftercare/parole.

This report focuses on several groups of children and youth with disabilities: (1) those who have never committed a delinquent act but are at risk of doing so; (2) those who are engaged in delinquency but have not yet become involved in the juvenile justice system; and (3) those who are or have been involved in the juvenile justice system. All three groups by definition are at risk of delinquency and, by extension, involvement (or further involvement) in the juvenile justice system. In each group, the presence of a disability may or may not contribute to delinquency or a greater likelihood of juvenile justice system involvement (e.g., school referrals to juvenile courts); research suggests that both are possibilities. Regardless, federal law mandates that the civil rights of children and youth with disabilities be protected, including receiving special education and other disability-related services. This report therefore examines not only the issue of preventing or reducing delinquency among these different groups but also the provision of required services. The primary focus is on the juvenile justice system. However, schools also are considered because of their potential role in preventing delinquency and referrals to juvenile courts, as well as facilitating transitions from custodial facilities back into communities.

Background

There is a tremendous gap in empirically based knowledge about children and youth with disabilities, especially those who are either at risk of delinquency or involved in the juvenile justice system. This gap covers a wide spectrum of largely unanswered questions involving distinct sets of policy issues. These issues range from the potentially conflicting philosophies underlying existing laws to what is known about effective prevention, intervention, and delinquency management strategies and efforts to ensure that the rights and needs of children and youth with disabilities are addressed. The objectives of this report cover distinct sets of policy-relevant questions that parallel areas in which significant gaps currently exist.

The report asks, for example, to what extent the philosophies of disability law and juvenile justice policies are contradictory or complementary. How, if at all, are disabilities linked to delinquency, and how are disabilities linked to juvenile justice system involvement, irrespective of any possible causal relationship between disabilities and delinquency? Are the causes of delinquency the same for youth with disabilities and those without disabilities?

From the standpoint of policies for reducing the number of youth with disabilities in the juvenile justice system, what exactly is the need for such policies? For example, what is the prevalence of youth with disabilities throughout all stages of the juvenile justice system? If youth with disabilities are overrepresented in the justice system, is this in any way linked to school-based practices and programming? How might the racial/ethnic dimensions of delinquency and juvenile justice processing contribute to a greater involvement of youth with disabilities in the juvenile justice system?

From a related policy standpoint, what exactly is the needs/services gap? What, for example, are the current or anticipated types and levels of programming for youth with disabilities who are at risk of delinquency or who are involved in the juvenile justice system, and how do these levels differ from the demand for them? Regardless of any gap, what are effective prevention, intervention and treatment, and delinquency management strategies for this population? Are federal laws effective in facilitating the identification of and provision of services to them? More generally, what are the barriers to and facilitators of implementing effective strategies for addressing their needs, and what are the next steps that should be taken to improve knowledge and practice?

The review for this report suggests partial answers to some of these questions. It also reveals that few systematic overviews of these diverse questions have been conducted. Most studies have investigated delimited parts of each question. The present report thus fills an important void by highlighting the wide range of questions and issues that policymakers, practitioners, and others may want to consider as they create and evaluate new programs and policies or pursue specific research agendas.

Findings

The results of the review and interviews are summarized along seven dimensions, collectively addressing the goal and objectives of this report. The overarching finding was that considerably more empirical research is needed. The report documented, for example, that there is relatively little quality research on almost every dimension that was examined, from the prevalence of disabilities at various stages of the juvenile justice system to the levels and impacts of federal efforts to enforce compliance with disability law. However, it also identified many practices and policies that schools, communities, and the juvenile justice system can undertake that may have a significant impact on preventing and reducing delinquency among children and youth with disabilities, and that may help ensure that their disability-related needs are addressed.

The major findings of the National Council on Disability's (NCD) research are as follows:

• Despite calls for greater prevention and early intervention initiatives in schools and the juvenile justice system, there is little evidence that past, current, or proposed laws will suffice to create this change or to overcome the many conflicting perspectives about youth with disabilities or young offenders.
• Any challenges to implementing disability law in schools are magnified in the juvenile justice system, where there is little understanding of disabilities or disability law and where few resources exist to adequately address the needs of youth with disabilities.
• Most sources suggest that many schools are not providing legally required services to youth with disabilities. The needs/services gap appears to be even greater in the juvenile justice system, where the primary focus is on sanctioning youth for their delinquent behavior, not on providing services. Systematic, empirical documentation of these gaps does not currently exist or is not readily available.
• There are many opportunities for improving both research and practice. However, the existence of such opportunities by themselves is insufficient to result in a change in the levels and quality of programming and enforcement of juvenile justice and disability law.
• Some research and anecdotal evidence suggests that as schools have become more restrictive and punitive (e.g., zero tolerance approaches to misbehavior), they have increasingly pushed greater numbers of youth with disabilities into the juvenile justice system. Many observers speculate that the failure of many schools to fully and consistently implement federal law, especially the Individuals with Disabilities Education Act, has contributed to this process.
• Few local, state, or national organizations maintain consistent or reliable records of the types and levels of services or funding of programs that focus on youth with disabilities who are at risk of entering or involved in the juvenile justice system.
• Despite calls for significant prevention and early intervention efforts in schools and the juvenile justice system, there is little evidence that such efforts are widespread. The absence is notable because research suggests that such programming may be the only effective method for reducing the involvement of youth with disabilities in the juvenile justice system, especially in the "deeper end" of the system (e.g., correctional facilities).
• Racial/ethnic minorities, including Native American youth, are overrepresented at most stages of the juvenile justice system and among the population of youth with disabilities. Yet, there is little evidence that juvenile justice systems are providing appropriate disability-related programming for this population, or that they have developed culturally appropriate approaches for these youth.
• A range of increasingly popular intervention strategies and trends exists in schools and the juvenile justice system. Although some explicitly focus on youth with disabilities, many more diffusely focus on youth with behavioral problems. The more popular disability and delinquency intervention strategies and trends include positive behavioral support treatment; alternative education; diversion from the juvenile justice system; restorative justice; specialized youth courts; and greater intra- and interagency information-sharing.
• Researchers have not systematically identified and assessed interventions or practices that focus primarily on youth with disabilities who are at risk of delinquency or are involved in the juvenile justice system. As a result, there remains little scientific basis for recommending specific programs for these youth.

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.

Conclusions

There is a tremendous gap in empirically based knowledge about children and youth with disabilities, especially those who are either at risk of delinquency or involved in the juvenile justice system. This gap covers a wide spectrum of largely unanswered questions involving distinct sets of policy issues. These issues range from the potentially conflicting philosophies underlying existing laws to what is known about effective prevention, intervention, and delinquency management strategies and efforts to ensure that the rights and needs of children and youth with disabilities are addressed.

The bulk of research on the children and youth of focus in this report--those with disabilities who are at risk of delinquency or involved in the juvenile justice system--provides a relatively weak foundation for drawing sound empirical generalizations. For example, one of the only relatively well-studied issues relating to this population is the prevalence of disabilities among incarcerated youth. NCD's research suggests that disabilities, especially learning disabilities and serious emotional disorders, are far more common among incarcerated youth than among youth in schools. Yet this research, too, suffers from inconsistent definitions and measurements. In addition, it provides a weak foundation for making generalizations about youth in other parts of the juvenile justice system, including probation, parole, and nonsecure residential treatment facilities. These problems are even more endemic in the other areas covered in this report.

This report has many implications for research and policies focused on children and youth with disabilities who are at risk of delinquency or justice system involvement or who are already involved in the juvenile justice system. The challenges are numerous, but in almost all instances the need for more and better research is clear. Which areas should be prioritized must ultimately be determined by policymakers and practitioners. Clearly, a more complete and accurate portrait of the kinds of disabilities present among youth referred to the juvenile justice system is needed. At the same time, research is needed on the extent to which youth with disabilities are having their needs addressed at all stages of the juvenile justice system. Research is needed as well on effective programming. Which areas require greater attention can be determined only by the priorities of specific stakeholders (e.g., schools, probation departments, correctional facilities, communities). However, advances in knowledge in any of these areas likely will contribute to a greater ability to decrease delinquency among children and youth with disabilities, to ensure that the needs of these children and youth are effectively addressed, and to enhance positive physical, mental, educational, and other life outcomes among this population.

[Note: The report is available at http://www.ncd.gov/newsroom/publications/2003/juvenile.htm]