Schools

Of all sectors, schools play the largest role in serving youth with mental and emotional disorders, ranging from mild to severe. “For the majority of children who received any mental health care, the education sector was the sole source of care,” Burns’ 1995 study concluded.³³ While schools are by no means serving all children with mental disorders, they are a prominent source of care for two reasons.

Of all sectors, schools play the largest role in serving youth with mental and emotional disorders.

First, under the federal special education law schools are mandated to help children with emotional disturbance. The special education criteria, however, are narrow enough so that only those with the most serious dysfunction qualify. Second, over the last 20 years, as leaders have focused on the connection between emotional well-being and school performance and as political pressure for academic achievement has mounted, there has been a striking growth in the number and variety of mental health services offered by schools for students with problems not severe enough to warrant, or qualify for, special education. These services are for students at risk for or diagnosed with mild to moderate disorders. In some cases, funding can be used for prevention programs for the entire student body.

Special Education — The Education for All Handicapped Children Act, created in 1975 (now Part B of the Individuals with Disabilities Education Act [IDEA]), requires that all handicapped children aged 3 to 21 receive a free, appropriate education in the least restrictive environment. Instruction is to be provided alongside their nonhandicapped peers when possible and according to the terms of an individualized education plan drafted by school administrators with input from teachers, parents, and physicians.

For school year 2000–2001, IDEA served about 5.7 million 6- to 21-year-olds, or about 11.5 percent of the student population at a total cost of about $50 billion.³⁴ (The program also served an additional 600,000 3- to 5-year-olds, or 5 percent of the total preschool population.)

For school year 2000–2001, IDEA served about 5.7 million 6- to 21-year-olds, or about 11.5 percent of the student population.

Eligibility for IDEA is divided into 13 categories: specific learning disabilities, speech or language impairments, mental retardation, emotional disturbance, multiple disabilities, hearing impairments, orthopedic impairments, other health impairments, visual impairments, autism, deaf/blindness, traumatic brain injury, and developmental delay.

Three of these categories are most applicable to children with mental disorders: specific learning disabilities (SLD), other health impairments (OHI), and emotional disturbance (ED). The SLD category is most appropriate for children with learning disabilities alone. Children qualify if they have problems understanding written or spoken language which, in turn, impairs their ability to listen, think, speak, read, write, spell, or do math.³⁵ Most services provided to SLD students are classroom-based. SLD is the largest category under IDEA. In school year 2000–2001, more than half of all children enrolled in IDEA programs (2.8 million) came under this category.³⁶

In 1991, IDEA was revised to allow children with ADHD to qualify for special education under the category of OHI. Most children with a sole diagnosis of ADHD who qualify for special education are placed in OHI. They qualify if they have a diagnosis of ADHD that harms school performance by causing limited alertness to academic tasks.³⁷ Under OHI, students are eligible for classroom and test accommodations, as well as therapies.³⁸ According to the Department of Education, the number of children served in the OHI category has increased by more than 300 percent since 1991, due in part to the inclusion of ADHD.³⁹ In school year 2000–2001, nearly 292,000 children were served under the OHI category, some with conditions other than ADHD. Although about 3 to 5 percent of all children are estimated to have ADHD, the portion served under the OHI category represents less than 1 percent.

Children with serious emotional disturbance (those with the most severe forms of mental disorders or with multiple disorders) can qualify for special education services under the ED category. To qualify, the law requires that students have a psychiatric diagnosis and that their school performance be impaired by one or more of the following: an inability to learn that cannot be explained by intellectual, sensory, or health deficits; an inability to form and maintain good relationships with teachers and peers; general depression; inappropriate behavior or feelings; and physical symptoms or fears resulting from personal or school problems.⁴⁰ In school year 2000–2001, 474,000 children qualified under the ED category.⁴¹

Qualifying under the ED category entitles children to intensive classroom help, usually provided in separate classrooms and, in some cases, separate schools. Because their conditions significantly impair their functioning, ED students can also receive a range of free services outside the classroom, including therapies, day treatment, and residential care. (Under IDEA, schools are not required to provide students with any needed medications.)

These related services, however, are restricted to those that are essential for the child’s learning. Over the past 25 years, the limits of schools’ responsibility for providing services have been tested in the courts. With some exceptions, schools can usually make the case against providing family therapy, respite care, and other non–school-based services. According to mental health advocates and experts, this is often insufficient, especially for children who are seriously acting out. Mattison says that parents also need to be taught ways to manage their child’s behavior. “If you want to help kids with temper [problems] and you’re not helping the parent, you’re not providing what the students need,” he says.⁴²

Because qualifying as emotionally disturbed under IDEA is the door to intensive school help, including some free supportive services, it is critical to note that most children who have a severe emotional disturbance do not receive special education. Although experts find that about 5 percent of all students have serious emotional disturbance, less than 1 percent qualified in 2001 for the ED category under IDEA, and most could have benefited from its services.⁴³

Qualifying as emotionally disturbed under IDEA is the door to receiving intensive school help, but most of these children do not receive special education.

There are a number of reasons why this group is so underserved by special education. In many cases, schools misidentify them as learning disabled under IDEA. One research study published by Forness and his colleagues in 2002 found that nearly half of a group of children with emotional disturbance were labeled by schools as learning disabled.⁴⁴

According to Forness, some schools are mislabeling these children because of they are not usually required to offer therapies or other nonclassroom services to learning disabled students under IDEA. (Residential care, for example, used when there are no intensive community-based services for some children with severe emotional disturbance, can cost upwards of $250,000 a year.)⁴⁵ Thus, learning disabled students are less costly to serve. In school year 1999–2000, the average cost of educating a learning disabled child in special education was $4,100; for an emotionally disturbed child, it was $7,700.⁴⁶ “Data suggests that as many as one-third of all learning disabled kids may have either ED or at least have co-morbid ED,” says Forness.⁴⁷

In 2003, testifying before Congress on a General Accounting Office (GAO) study of children who enter the juvenile justice and child welfare systems solely to access mental health care, GAO official Cornelia Ashby told a similar story:

Almost all the parents that we interviewed said that school officials were reluctant to evaluate their children to determine eligibility for special education services or provide specialized services for them. For example, a parent of a child with a mental illness in Kansas said officials in her daughter’s school refused to evaluate the child for a year and a half. After the evaluation, the school recommended that the child work with a learning disability specialist for 30 minutes a week, even though the parent said this service was insufficient and did not address her daughter’s destructive, violent, and aggressive behavior.⁴⁸

Schools may also want to avoid stigmatizing a child by labeling them emotionally disturbed—so they either do not enroll them in IDEA or only do so under the learning disabled category. In addition, they may assume that the public or private mental health systems will provide the care these children require. Interestingly, seriously emotionally disturbed children are likely to come into contact with numerous service systems, although most who get any services get them through special education.⁴⁹

In addition, children with severe emotional disturbance are often extremely disruptive. For years, children’s advocates and researchers have argued that schools prefer to expel rather than serve them under IDEA. They claim that the federal definition of emotional disturbance under IDEA is vague and offers schools a loophole for excluding many children with behavior problems by asserting that their problems are not caused by a mental disorder. Specifically, advocates oppose a clause in the IDEA that excludes children from ED services if they have a social maladjustment. The IDEA does not define this term, but school officials often interpret it to apply to students who consistently break rules.

The resulting application of the ED categorization, to some, seems haphazard. “In fact, the majority of students who have been identified as emotionally disturbed by their school have a conduct disorder and thus exhibit some of the behaviors for which others are suspended or expelled. Sorting students into two groups—suspending one group and giving the other access to special education…cannot be justified from the research,” according to the Bazelon Center on Mental Health Law.⁵⁰

“Sorting students into two groups [by] suspending one group and giving the other access to special education…cannot be justified from the research.”

A number of studies show that, even when children are served under the ED category of IDEA, they do not receive all of the services needed for improvement. Mattison conducted a study over a three-year period in the early 1990s of the St. Louis, MO, special education system, which found that 40 percent of ED children were not receiving any therapy or medication.⁵¹ Another study conducted in 1992 by Pelavin Associates found that only 25 percent of ED children (then categorized as seriously emotionally disturbed) were receiving therapy.⁵²

Non-IDEA Mental Health Services — There is rising consensus in the children’s mental health field that schools are the optimal place for reaching out to children. School is the predominant social environment for young people. Here, providers can get to know the students’ teachers and peers as well as the way the youths behave in their surroundings and be poised to detect problems early. And the location means that students are much less likely to miss programs or appointments. Increasing the number of school-based mental health services was among the chief recommendations made by the President’s New Freedom Commission on Mental Health to help improve access to care for children.⁵³

There is rising consensus in the children’s mental health field that schools are the optimal place for reaching out to children.

For the past two decades, the number and variety of school-based programs to address the mental health needs of students has risen dramatically. (SAMHSA will soon be releasing findings from the first national survey that attempts to quantify the amount and type of non-IDEA mental health services provided in schools.) For instance, schools are increasingly partnering with local mental health agencies to place mental health professionals on site. In addition, about 1,500 public schools across 45 states house school-based health centers that staff primary care providers to meet the physical and mental health needs of students. Such centers are usually located in low-income neighborhoods. About 60 percent of these centers employ mental health staff and 80 percent offer crisis intervention services.⁵⁴ In surveys of students who use the centers, mental health is cited as the leading reason for visits.⁵⁵

A variation on this model is the school-based mental health center, a separate clinic on school grounds that solely addresses the mental health—not physical—needs of the students. A number of states, such as New York and Connecticut, as well as the city of Baltimore have provided funding for such centers.

There has also been a steep rise in the number of school-based mental health promotion and prevention programs. Programs include school-wide discipline, violence, teen pregnancy, gang involvement, and substance abuse prevention, as well as self-esteem promotion. They are funded by a variety of sources, including the federal Centers for Disease Control and Prevention, SAMHSA, the federal Maternal and Child Health Block Grant, the Departments of Education and Justice, state and local substance abuse, mental health, and education agencies, and private foundations.

An example of federal collaboration in violence prevention is the Safe Schools/Healthy Students Initiative, a grant program run jointly by SAMHSA and the Departments of Education and Justice. Designed to prevent youth violence, the Initiative gives about $145 million to nearly 80 local school districts to encourage partnerships between schools and local law enforcement and mental health agencies. The agencies work together to create a range of violence prevention services for local youth.⁵⁶

Private Insurance

Because nearly 70 percent of children are privately insured,⁵⁷ private health insurance pays a major portion of children’s mental health services. Most privately insured children are covered through either health maintenance organizations (HMOs) or preferred provider organizations (PPOs).

Parents of children with serious emotional disturbance who are enrolled in IDEA turn to their plans to provide what schools will not (often times family or individual therapy, respite care, etc.). And for the majority of children with serious emotional disturbance whom the IDEA does not serve, parents also look to private coverage when expensive services are called for, such as residential care.

Private insurance is also an important source for children with more moderate disorders. Parents of these children usually turn to their plans first to seek coverage for individual and family therapy and medications.

Most plans, however, place limits on mental health visits, and some either exclude or limit coverage for certain mental disorders, so children with mental health problems rarely get all the care they need from private insurance.⁵⁸ Though privately insured children accounted for nearly half of the $12 billion spent on children’s mental health in 1998, much of the care they received was paid for by other sources. According to the National Conference of State Legislatures, “A relatively large portion of specialty care is not paid for by [private] insurance; instead, the out-of-plan specialty care is often provided through the education system.”⁵⁹

Though privately insured children accounted for nearly half of the $12 billion spent on children’s mental health in 1998, much of the care they received was paid for by other sources.

In 1996, Congress passed the Mental Health Parity Act, which eliminated annual and lifetime dollar limits that private plans can place on mental health care services. (The law applies to companies with 50 or more employees and excludes self-insured plans.) The law, however, does not prohibit plans from placing limits on numbers of outpatient visits and inpatient days or from excluding treatment for certain diagnoses. Although 33 states have passed their own mental health parity laws, many of which exceed the federal standard, serious emotional disturbance is a category commonly not included.⁶⁰

In 2002, the Maternal and Child Health Policy Research Center released a study assessing children’s mental health care coverage in 98 of the most commonly sold HMO and PPO plans across the country. It found that prescription drug benefits were not covered by about 20 percent of plans. Another 20 percent of plans offered drug coverage but not to those with ADHD in particular or a behavioral disorder in general. More than 20 percent of plans excluded coverage for residential treatment and partial hospitalizations. “Ancillary therapy and mental health therapy were the benefits least likely to be available in the amounts considered necessary by medical experts who routinely treat children with special needs,” the study concluded.⁶¹

Medicaid

About 20 percent of children with a diagnosed mental health problem are publicly insured—most of them through Medicaid.⁶² In 1998, Medicaid covered 24 percent of all children’s mental health care expenditures.⁶³

On paper, children covered by Medicaid have more generous mental health coverage than their privately insured peers, and Medicaid is required to pay schools for the costs of health-related IDEA services for such students. Under the Medicaid Early and Periodic Screening, Diagnosis and Treatment (EPSDT) benefit, children are entitled to medically necessary services to treat a condition. This includes mental disorders detected during a screening, which is intended to include an assessment of a child’s mental health needs.⁶⁴ Depending on need, services covered can include inpatient and residential care, medications, and a range of outpatient therapies and support programs for the family.

On paper, children covered by Medicaid have more generous mental health coverage than their privately insured peers.

The EPSDT benefit to treatment was strengthened in 1989, largely to better serve special needs children, because the services they required were too often optional under state Medicaid plans. Today, in practice, Medicaid children enjoy much fewer restrictions on length and types of mental health services than privately insured children. But there are still formidable barriers to care.

A number of studies have found that states, both through managed care and fee-for-service Medicaid, have come up short in fully implementing the EPSDT entitlement. Problems include low payment rates (one Minnesota psychologist told the GAO in 2003 that Medicaid reimbursement for a therapy session was about half the customary rate.⁶⁵), provider shortages, lack of parental awareness of the EPSDT screen, and concerns that managed care’s capitation arrangement discourages plans from offering care. (More than half of Medicaid recipients are enrolled in managed care plans.) A 1999 report by GAO found that at least 28 states had been sued since 1995 by parents or advocates for failing to provide access to EPSDT services.⁶⁶

Because, in many states, decisions of what constitutes medically necessary care are still made on a case-by-case basis, accessing some services requires legal action by parents. According to the Bazelon Center for Mental Health Law, attorneys have had some success getting Medicaid to pay for in-home services and behavior management, services for ED children that IDEA usually does not cover.⁶⁷

SCHIP

In 1997, Congress enacted SCHIP (State Children’s Health Insurance Program) to provide health coverage to low-income children whose families’ incomes are too high to qualify for Medicaid but too low to afford private coverage. States can choose to operate SCHIP as an extension of their Medicaid programs, as a separate program, or as some combination. For the 16 states that run SCHIP as a Medicaid extension, children’s mental health benefits are as generous as those under Medicaid.⁶⁸ In the rest of the states, SCHIP mental health coverage is generally more restrictive than Medicaid’s but, overall, more generous than what most private plans offer.

SCHIP programs operate separately from Medicaid do not have to follow Medicaid’s coverage rules. These programs can charge premiums and copays and can offer fewer mental health services than what Medicaid requires. For example, non-Medicaid SCHIP programs in California and Utah are not required to cover residential care and targeted case management, nor do they have to provide EPSDT screens or coverage for care deemed necessary through a screen.⁶⁹ Most non-Medicaid SCHIP programs place limits on inpatient and outpatient mental health visits, and some limit inpatient substance abuse services.⁷⁰

Child Welfare and Juvenile Justice

A small but striking portion of families with children with serious emotional disturbance have relinquished custody of their children to either the child welfare or juvenile justice systems for the sole purpose of accessing mental health care, a circumstance the President’s New Freedom Commission on Mental Health calls “appalling.”⁷¹ Known as a custody for care trade, most families caught in this dilemma are middle class and do not qualify for Medicaid, which offers the best coverage for the array of intensive services their children need. Most often their private insurance does not cover such services, or they have exhausted their private coverage. Once placed in the custody of the foster care system (under Title IVB of the Social Security Act, the Child Welfare Services Program) children become eligible for Medicaid.

A small but striking portion of families with children with serious emotional disturbance have relinquished custody for the sole purpose of accessing mental health care.

Through the juvenile justice system, mentally ill children arrested for certain crimes can receive residential treatment and partial hospitalization for free when it is ordered by the courts. Children with court-ordered treatment are also often given preference for care slots, which is why some families who have insurance but face long waits for services place their children in police custody.

A 1999 survey conducted by the National Alliance for the Mentally Ill of about 900 parents of children with serious emotional disturbance found that 20 percent of parents had relinquished custody to get intensive services that their children needed but could not get, either due to cost or availability.⁷² And a GAO study based on a sampling of 30 counties in 19 states, found that, in fiscal year 2001, there were at least 12,700 cases of children placed in the custody of child welfare and juvenile justice systems so they could access needed mental health services. About 3,700 children went to child welfare systems; another 9,000 were placed in the juvenile justice system by police who had detained children—sometimes at parents’ request—for delinquency related to their emotional disorders. Because less than half the states were surveyed, the GAO stated that the number was most likely an undercount.

Public System of Mental Health Care

The public mental health care system is an umbrella term for both public financing streams and direct service programs for low-income and uninsured children, as well as those in state custody. Medicaid is the largest public payer of mental health services. Other public funds mainly come from state and local mental health authorities, which receive some funding from SAMHSA (through block grants and discretionary programs) and other federal agencies. State and local child welfare and juvenile justice agencies fund mental health care for children in their custody.

The largest federal direct service program for children’s mental health is the Children’s Services Program funded by SAMHSA. At a fiscal year 2004 budget of $102 million, it offers grants to localities to develop community-based systems of care for children with serious emotional disturbance. The goal is for communities to develop an infrastructure of high-end care—case management, respite care, family counseling, and day treatment—so that children with serious emotional disturbance get the support they need to be able to live at home. With grants to about 40 to 60 communities a year, the program serves about 6,000 children annually.⁷³

Other direct service programs include federally funded community mental health centers, which also receive substantial third-party revenues from Medicaid, and a range of clinics and programs supported by state and local mental health authorities. Some jurisdictions offer a generous array of in-home therapy, day programs, and intensive case management for children with serious emotional disturbance. However, the surgeon general’s report notes, “since there has never been a mandate to states to provide mental health services to children and adolescents, the state or local support for such services has been variable.”⁷⁴

Thus, the strength of the public mental health care system relies on the strength of Medicaid funding and the well-being of state and local economies. Due to problems in both arenas, public funding for mental health care over the past three years has been cut. In 2002, according to the National Mental Health Association, nearly two-thirds of states cut mental health services through their state mental health budgets, Medicaid, or both.⁷⁵ Between 2000 and 2002, 16 states instituted rules to restrict access to psychotropic medications.⁷⁶ Budget cuts have yielded a variety of shortfalls. In Arkansas, for example, private, nonprofit mental health providers that contract with the state have had to reduce the length of treatment sessions and increase the length of waiting lists.⁷⁷ Oregon cut community mental health funding in 2003 for nearly 4,000 non-Medicaid children and eliminated 164 psychiatric day treatment slots for youth.⁷⁸ That same year, in response to budget cuts, the Missouri Department of Mental Health decided to close a 12-bed children’s unit.⁷⁹

The strength of the public mental health care system relies on the strength of Medicaid funding and the well-being of state and local economies.