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Children's Voice Article, May 2001

Mental Health and Child Welfare: Waiting for Care

Shortages of beds, barriers to access, and holes in the infrastructure of child mental health leave many kids seeking treatment in emergency rooms, pediatric wards, or adult facilities- or simply going home to wait.

By DeQuendre Neeley-Bertrand

"Valerie" is a 15-year-old mildly retarded young woman who was gang raped several years ago and suffers from posttraumatic stress and other mood disorders. She spent more than five months last year in a Massachusetts hospital after threatening to commit suicide at school. Her admission to the hospital came after several stops over three years at various residential facilities and other hospitals. Still, it took weeks for a psychiatric bed to open up for her. Under such duress, the hospital emergency room was not the proper place for her to wait- waiting shouldn't have been an option, yet neither was going home.

The adolescent, who is cared for by her grandmother, represents yet another challenge to an already overtaxed child mental health infrastructure: Valerie has multiple diagnoses, and multiple agencies have a stake in her care. Finding the appropriate treatment can be a monumental task. She is like many other children in need of mental health services, who find themselves languishing in pediatric wards, emergency rooms, adult psychiatric beds, or more restrictive settings until an appropriate spot becomes available.

These troubled youth, who are boarding at hospitals waiting for care, are just one part of the fragmented puzzle that is the state of children's mental health care in the United States. According to the U.S. Surgeon General, nearly 20% of all children and adolescents- some 12.6 million- suffer from some mental health problem. Of those, 10% suffer from mental illnesses severe enough to cause some level of impairment. More than 80% of all children and youth with some mental health problem- more than 10 million- do not receive any treatment. Left undiagnosed or untreated, youth suffer tremendous quality-of-life impairments; they are at increased risk of dropping out of school or ending up in the juvenile justice system. And their impairments are likely to follow them into adulthood.

"Clearly, there's a basic lack of services for kids with mental health needs," says Maril Olson of the National Mental Health Association. "Kids ending up in emergency rooms when they should be in a psychiatric unit is yet another indication we are not really prepared to serve kids with mental health needs. We still do not have the range of services, the continuum of care, that is necessary."

Barriers

Children who are already being served by such systems as child welfare and juvenile justice are particularly vulnerable to psychosocial stressors and are in the greatest need of care. Still, they and other youth are suffering from lack of access to care, improper diagnoses, the ever-present stigma attached to psychological treatment, and for some, racial disparities.

In Valerie's case, the wholesale dropping of child psychiatric units, or hospitals reducing the number of child psychiatric beds nationwide over contracting reimbursement methods, is in large measure to blame. The system is replete with stopgap practices that don't bode well for the increasing number of children who are in need of mental health services.

Access. Perhaps the greatest barrier to children receiving mental health care is access. Those who can afford private psychological treatment wait weeks for appointments to open up, even though their conditions can't wait. Low-income and minority families who, through such systems as child welfare, are supposed to receive coverage under Medicaid simply don't.

"Most of [the child welfare population] get Medicaid and therefore should be able to get mental health services," says Marilyn Benoit, president-elect of the American Academy of Child and Adolescent Psychiatry (AACAP) and head of Child Psychiatry Services at Howard University Hospital in Washington, DC. "But you really have to ask, Are these services available and accessible and appropriate? I have run into so many families being served by, say, the foster care system, who say that just isn't the case. They may be told there is respite care for parents, for example. But when they try to sign up for it, the waiting list is a mile long."

Diagnosis. Another formidable barrier is the actual diagnosing of mental health problems in children and youth. Depending on their socio-economic status, families often have different value judgments about what is normal behavior and may be reluctant to seek psychiatric treatment for fear of stigma. Wealthier families sometimes tend toward overdiagnoses and over-treatment, often having their youngest children on a regular regimen of Ritalin or other behavior-modifying drugs. In child welfare populations, Benoit says, the situation is similarly dire, with meager service that leads to inappropriate diagnoses.

"An abused or neglected child with serious emotional problems is often only being looked at as acting up or being aggressive," she says. "[Caseworkers] look to a doctor to medicate the problem away. This is all too common, and they call that mental health services."

Infrastructure. Broad evidence exists that the lack of a unified infrastructure too often results in children not being identified as having mental health problems. Instead, they are funneled into the juvenile justice system- impoverished children and youth of color disproportionately so.

Studies suggest race is a strong predictor of mental health outcomes. For example white, middle-class youth are more often placed into health and mental health services, while black and low-income children are inordinately tracked into juvenile justice, even when presenting the same behaviors. Black youth are more likely to be referred for mental health services because of behavior problems they present rather than because someone identified warning signs that may have emerged much earlier. More often, they are sent to corrections because of these undiagnosed problems instead of receiving psychiatric treatment.

Strategies

These and other factors contribute to what a recent surgeon general's report calls a "health crisis." A National Action Agenda for Child Mental Health proclaims "children are suffering needlessly because their emotional, behavioral, and developmental needs are not being met by those very institutions [that] were explicitly created to take care of them."

What is needed, the report states, is a move toward a community health system that balances health promotion, disease prevention, early detection, and universal access to care. Child mental health experts say that success would be a commitment to mental health that is equivalent, for example, to the government's initiatives in childhood immunization.

The report, which contains recommendations on several goals- from promoting awareness to training frontline service providers—is being looked at as a blueprint for a stronger child mental health infrastructure, one that coalesces the mental health component of all child- and family-serving systems, from schools to child welfare to primary health care to juvenile justice.

The bottom line, the report says, is that there must be improved, earlier recognition and appropriate identification within child-serving systems. Disparities must be eliminated by focusing on equal access and equal outcomes of all children and youth, and the field must close the gap between research and practice, ending unnecessary medicating and time-wasting through ineffective therapies and practices.

"There is a strong push for community-based services," Olson says. "We want prevention and early intervention in the least restrictive settings and closest to home. The ideal is that kids are not warehoused in restrictive residential placements; they can be served while they are living in the community through home-based services, outpatient therapy, or day treatment programs."

Most salient in any effort to improve mental health care for children will be the attention given to schools, child welfare, juvenile justice, and primary care, Olson says. At school, children with mental health problems are usually identified after the regular classroom teacher can no longer manage their behavior problems, according to Steve Forness of UCLA.

Forness headed a study that found schools are slow to intervene, even when parents or other authorities report suspicions of deeper problems in their children. He says educators need better training to recognize the early symptoms of serious mental health problems, and schools ought to conduct early screenings for mental health problems, as they do for vision and hearing problems and other basic health deficiencies that could impact learning.

The surgeon general's report also suggests several school-related programs have the ability to curb mental health problems, including Head Start; the Infant Health and Developmental Program, which tracks certain risk-category babies to age 3; and the Primary Mental Health Project, a federally funded state-run program, operating in just 2,000 schools, for early detection of very young children's problems with adjusting to school.

Children in the child welfare and juvenile justice systems have the highest usage rates of mental health services- understandably so, given the environmental factors that exacerbate underlying psychiatric illnesses, says Ronald Burd, President and CEO of the Devereux Foundation and chair of CWLA's American Association of Psychiatric Services for Children (AAPSC) Advisory Board. But whether they are getting complete, quality care is another story.

"Children in foster care are particularly vulnerable," Benoit says. Further, "inner-city, minority kids, because of psychosocial stressors that tend to be more prevalent in their communities, and other historical reasons, are being underserved by child mental health."

When schools, child welfare, and the larger mental health structure fails, kids often wind up in the judicial system, so improving each of these points on the child mental health compass is important, Olson says. Not to be neglected however, is the primary health care system. "If parents suspect something is wrong, they often take the child to their primary care physician first," she says. Medical professionals, likewise, need more intensive training in recognizing indications of serious mental health problems in the children they see. "You need to have some of everything on the spectrum to provide a real continuum of services."

Several public, private, and joint initiatives are under way to ensure more than lip service to the problem of inadequate child mental health. Experts are encouraged the dialogue is leading to real action in behalf of children.

In 1995, the federal Center for Mental Health Services began providing $60 million to states and tribal governments for demonstration projects modeling systems of care that deliver more comprehensive and coordinated care in child mental health. The money has helped improve underdeveloped programs, such as respite care, day treatment, crisis outreach, therapeutic case management, and diagnostic and evaluation services, in child welfare, education, and juvenile justice.

For example, an Ohio project is aimed at serving Appalachian populations and building on their sense of place, independence, and family ties by pooling funds for school-based, home-based, and 24-hour services. Five California counties have joined forces in a project offering 24-hour therapeutic care or therapeutic foster care as an alternative to hospitalization. Thirteen rural Kansas communities, too small to run effective mental health services independently, have united to provide services to children with serious emotional troubles; five centralized mental health centers coordinate care. Evaluations of these demonstration projects are under way.

Research assessing the general state of affairs and the extent of problems has also been lacking, says Olson, whose organization is completing a two-phase study with 12 states, assessing their current capabilities to handle child mental health services. The study, Unmet Needs, looks at demographics, the number of kids in states with mental health services, services being offered, and funding issues. Due out this spring, the report finds most of the states have serious gaps in provision of services.

"The umbrella issue is purely funding, but on paper there are all these services but truly no capacity to meet these needs," Olson says. "Services are fragmented, and many families are being left out." Benoit, who also sits on the research council at the National Institute of Mental Health, says the organization will soon release several recommendations on what direction child mental health research should take. AACAP is also working on a public campaign that will bring foster care professionals to the table to discuss and recommend public policy on child mental health services in that area.

The Devereux Foundation has undertaken a study identifying youngsters at high risk of developing mental illnesses. In addition, CWLA's AAPSC Child Mental Health Division is working on an initiative to identify best practices, garner grant money to support studies that measure the effectiveness of some mental health treatment practices, and conduct public workshops for frontline professionals on the gamut of mental health services for children and youth.

"The mental health needs of children have long been neglected," Burd says. "We tend to see kids through juvenile justice, child welfare, or education, but failures that take place in any one of those systems creates problems that are not well understood."

Burd and other experts in the child mental health community view the surgeon general's report as a groundbreaking effort- akin to the landmark report on the effects of tobacco in the 1960s- and believe it will spark continued dialogue and research and improve services for children and youth. Yet, an inkling of doubt remains as to whether the Bush Administration will pick up the torch on child mental health.

"Everybody's been waiting with bated breath to see when it's going to be mentioned," Benoit says. "We just have to keep mentioning it; those of us who serve kids have to continue to educate, advocate, and hopefully legislate." Burd says Bush's emphasis on education and plans to broaden the Americans with Disabilities Act are promising signs that child mental health will not go ignored. In addition, he views initiatives in the nonprofit arena as fruitful.

"The plight of our children's needs are as great as they've ever been; there is still a growing need to address this precious resource and elevate these issues to a top priority," he says. "There are some signs in the wind, but obviously the proof will be in the action."

DeQuendre Neeley-Bertrand is associate editor of CWLA's journal, Child Welfare, and a contributing editor to Children's Voice.

FYI

In 1997, the Child Welfare League of America made children's mental health a priority when the American Association of Psychiatric Services for Children (AAPSC) merged with the League to create CWLA's AAPSC Child Mental Health Division. To learn more about CWLA's work in the area of child mental health, visit the AAPSC Child Mental Health Division website at http://www.cwla.org/programs/mentalhealth, or contact CWLA Director of Behavioral Health Stephen Hornberger at 202/639-4918 or shornberger@cwla.org.

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