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Medical News & Perspectives
October 25, 2000

Children With Mental Problems Not Getting the Care They Need

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JAMA. 2000;284(16):2043-2044. doi:10.1001/jama.284.16.2043

Most of the estimated six to nine million children and adolescents in the United States with serious emotional disturbances are not getting the help they need, according to federal health officials, mental health experts, and mental health advocacy groups.

This unmet need is coming under unprecedented scrutiny by federal health officials, professional groups, and others.

Last December, US Surgeon General David Satcher released Mental Health: A Report of the Surgeon General. This 500-page publication, the first-ever Surgeon General's report on this issue, underscores that a range of barriers make it difficult for people with mental illness—both children and adults—to receive appropriate care.

Such barriers include a lack of health insurance and other financial problems, cultural stigma that discourages families from seeking care, a lack of mental health care professionals with expertise in treating children and adolescents, and a complex and fragmented mental health service delivery system.

"There is broad evidence that we lack a unified infrastructure to help these children and many children are falling through the cracks," noted Satcher in remarks at a press briefing last month. "Too often, children who are not identified as having mental health problems and who do not receive treatment enter the juvenile justice system and end up in jail."

Experts also note that children with emotional and behavioral disorders are more likely to abuse drugs and alcohol and are at higher risk of suicide.

Rising need, falling services

Concern about this issue also prompted the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics (AAP), the American Psychological Association, the American Psychiatric Association, and eight other national organizations concerned with the mental health needs of children to develop a consensus statement with recommendations to address the problem.

The impetus behind this cooperative effort was the recognition that although the need for mental health services has been increasing for two decades, efforts to curb health care costs have resulted in decreased availability of such services, said Joseph Hagan, MD, a Burlington, Vt, pediatrician who chairs the AAP committee on psychosocial aspects of child and family health.

A recent study at the University of Pittsburgh found that between 1979 and 1996, the rate of psychosocial problems identified in the primary care setting increased dramatically, from about 7% to more than 18% of all visits to the pediatrician by 4- to 15-year-olds (Pediatrics. 2000;105:1313-1321). Despite this increased recognition of such problems among children and adolescents, "it's actually getting harder rather than easier to access mental health services," noted Hagan.

The groups outlined 20 recommendations aimed at increasing access to treatment, including increasing resources in both public and private sectors; establishing parity between medical health services and mental, behavioral, and substance abuse services; simplifying the process required for young patients to receive treatment; eliminating exclusions for diagnostic categories, chronic disorders, and preexisting conditions such as chronic illness; and increasing the number of qualified child mental health and substance abuse clinicians.

A national action plan

At a conference on children's mental health convened last month by the Surgeon General, some 300 pediatricians, psychologists, psychiatrists, family advocates, and educators met to discuss barriers to care and develop a national action plan for identifying and treating mental illness in the nation's youth. The plan, which will be released by the end of the year, will reflect recommendations from the meeting as well as findings from a conference held this month on medications in preschool children.

One area of agreement that emerged from the surgeon general's conference was the need for a broad system to identify, diagnose, and treat children with mental disorders, Satcher explained. Because children who aren't identified cannot be diagnosed or treated, it is essential to educate the adults who are closest to children and adolescents with potential problems—parents, teachers, and primary-care physicians—about behavioral and emotional issues.

"We need to learn from the field of cancer and its lifesaving ‘five warning signs' and create a simple set of warning signs for mental and behavioral problems with kids," said Satcher"This information needs to be distributed widely to parents, the general public, as well as professional groups."

An office-based "primer" that would help parents know what questions to ask their child's physician and underscore the issues physicians should be raising with parents could also identify troubled youngsters.

Communicating such information isnot easy during an 8- to 12-minute office visit, but technology also might be enlisted to help primary care physicians identify children with mental disorders, said Kelly Kelleher, MD, of the University of Pittsburgh. A touch-screen computer setup in the waiting room that asks parents a series of questions could elicit pertinent information and score the results on the spot, providing the physician with a tool for spotting potential mental health problems.

Uninsured and underinsured

Not surprisingly, many children have difficulty getting care because of financial barriers. Nearly 12 million children age 18 and younger are uninsured, according to the Children's Defense Fund.

"The number one problem is what to do with uninsured children," said Kenneth B. Wells, MD, MPH, of the University of California, Los Angeles, and RAND Corp, Santa Monica, Calif. There is no single solution to this problem because states vary a great deal in the levels of mental health support they provide for such patients.

Some children whose families have private health insurance are considered underinsured because they lack adequate mental health benefits. Although legislation to establish parity between medical and mental health services may be intended to establish mental/behavioral health benefits, in practice such measures may not translate to adequate care.

According to data presented by Wells from an analysis of three large national data sets involving more than 46,000 children, more than seven in 10 adolescents with mental health problems receive no care. Adolescents from families lacking health insurance are even less likely to be treated.

About 80% of uninsured children who need mental health services receive no care, the study showed. Minority children are also less likely to receive appropriate care—more than 80% of Latinos with mental health problems do not receive care.

Yet another barrier is a health care system geared to acute illness, not chronic disorders, noted Kelleher. "Even in children identified as having a mental health problem, less than 41% ever saw a mental health professional within the next 6 months," he said. Moreover, only 13% of those referred had more than five or six visits within the next 6 months.

"For a child with a behavioral health problem, getting just one visit per month over the next 6 months is a minimum of care—and yet 87% of the population didn't even come close to it," Kelleher noted.

Another deterrent to care is the scarcity of physicians and other mental health care professions with expertise in treating children and adolescents. As a result, young patients may face long waiting periods before they can receive help. And quite often, managed care plans may approve only a few sessions, necessitating a cumbersome reapproval process for patients who need ongoing therapy.

For relatively rare but life-threatening eating disorders, notably anorexia nervosa, appropriate programs in the community may not exist at all, said Marsha Marcus, MD, chief of the eating disorders program at the University of Pittsburgh School of Medicine and a member of the Academy for Eating Disorders.

"Our own center is a resource for inpatient treatment for a fairly large geographic area, including the western part of Pennsylvania, West Virginia, and much of Ohio," said Marcus. Even patients who receive approval for treatment there from their state Medicaid programs or insurance companies may not be able to remain long enough to ensure recovery.

Experts gathered at the surgeon general's conference stressed the need for evidence-based programs based on strategies that have been proven to work.

"Everyone in the field agrees that we need to get information on the effectiveness of some of the programs we have," said Wells. But in many cases, the studies needed to provide such evidence have not yet been done.

In the meantime, children and families in distress need help now. "We need to use what we already know and learn fast what remains to be understood," Satcher said.