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Fragmentation and Gaps in Care—for Children

"No one should be needing to play hide and seek to locate appropriate mental health treatment while watching a relative deteriorate. After one year, we have not found one resource to help us coordinate mental health care…it is a full time job for me to coordinate all the appointments with psychiatrists, counselors, blood work, social services, and special education …We hope that our 1992 van will weather the winter without major work."
   —Parent from Wisconsin

The "mental health maze" is more complex and more inadequate for children. The most seriously affected children are defined, under Federal regulations, as having "serious emotional disturbance," which means that they have a diagnosable disorder that severely disrupts social, academic, and emotional functioning. About 7-9 percent of all children (ages 9 to 17) have serious emotional disturbance, or SED (DHHS, 1999). That means one or two kids with serious emotional problems in virtually every classroom. The Commission has heard from families whose children could not get an accurate diagnosis for years and for whom the maze of "helping" programs is "opaque," in the words of a father from Chicago. The potential sources of help may include teachers, school counselors, pediatricians, family physicians, psychiatrists, clinics, psychologists, and courts. Families do not know where to turn, and the first choices may not be able to help. The service system in many communities is more fragmented for children than that for adults, with even more uncoordinated funding streams and differing eligibility requirements. This problem is partly the unintended result of good intentions: there are more programs set up to serve children than adults. But this leaves coordination up to families who are coping with their children's behavioral problems and who may not have the knowledge to navigate the maze. All of the problems are disproportionately worse for children who are ethnic and racial minorities (DHHS, 2001).

Intervening with good services can help to prevent the worst nightmares for families: school failure, juvenile delinquency, substance abuse, and suicide. Yet only a fraction of children with SED has access to school-based or school-linked mental health services. The failure to reach many SED children in schools is partly the result of an approach to special education that also needs reform, as the President's Commission on Excellence in Special Education has recommended. Those children with SED who are identified for special education services have higher levels of absenteeism, higher drop-out rates, and lower levels of academic achievement than students with other disabilities.

Model Programs

The Commission has identified several exciting community-based models that make tangible differences for our children and adolescents. They range from prevention in infancy all the way to treatment of the most severe problems in adolescence. They focus on tailoring services to children at the greatest risk, particularly minority youth.

One model program starts early, indeed before birth. It is one of the few proven methods of preventing our children from tumbling into the juvenile justice system. The program is almost too simple to contemplate: it sends a trained nurse to the home of a high-risk woman during her first pregnancy and extending through the first year of her child's life. The nurse helps the young, typically unmarried, woman learn how to parent and to avoid risky behavior. The benefits are tangible for children a remarkable 15 years later: more than 50 percent reduction in their arrests and convictions, less risky behavior, and fewer school suspensions and destructive behaviors (Box 1). The less risky behavior entailed fewer sexual partners, less running away, and less use of illegal substances. These benefits were documented by the most rigorous type of study—a randomized clinical trial—after which children were tracked for 15 years. The results have been published in the most prestigious medical journals and have been replicated in several cities, including an inner city, urban population.

Our review indicates that this program, the Nurse-Family Partnership, is so impressive that it is being used in 270 cities in 23 states. It could be expanded further, except for one obstacle: the service does not fall under any traditional category of Federal or state program jurisdictions. Federal programs typically do not provide reimbursement without waivers of existing rules. The system is simply not organized in a way that readily rewards effective innovations and promotes proven methods of prevention.

The mental health service system also needs to consider new ways to deliver care to children in a place long overlooked, our Nation's schools. Almost a decade ago, in 1993, a school principal in Dallas partnered with a physician to build the Nation's first comprehensive school-based program in mental health. The partners bridged two distinct systems, the school system and the mental health system, by creating a new access point for mental health care in the schools, using both school district and mental health funds. The story of this union is inspiring (Box 2). The program has ushered in improvements in children's attendance, discipline referrals, and teacher evaluation (Jennings et al., 2000). There is even preliminary evidence showing that standardized test scores of children served by the program improve relative to their peers, nationally and locally. The program serves a high number of minority children. The staff are ethnically diverse, with almost 70 percent African American or Hispanic. Having staff who share cultural backgrounds with children and families naturally helps to engage them. It also illustrates a key component of what has been called "cultural competence."

Another exemplary program expressly targets children with serious emotional disturbance. The program, called Wraparound Milwaukee, strives to integrate services and funding for the most seriously affected children and adolescents (see Box 3). Most are minorities in the child welfare and juvenile justice systems. Wraparound Milwaukee demonstrates that the seemingly impossible can be made possible: children's care can be seamlessly integrated. The services given to children not only work, in terms of better clinical results, reduced delinquency, and fewer hospitalizations, but the services are also cost-effective.

"This is an ordinary miracle."
   —Bruce Kamradt, Director, Wraparound Milwaukee

For the average child in the program, the cost is almost 40 percent lower than the cost of traditional approaches that emphasize residential treatment, juvenile correctional placements, and psychiatric hospitalization. These traditional approaches had been funded largely by the child welfare and juvenile justice systems, and by Medicaid's mental health benefit. The results of Wraparound Milwaukee are eye-opening: after enrollment in the program, the rates of felonies and misdemeanors have been cut by about half (see Figure 2). Imagine the nationwide impact on our juvenile justice system if this program were implemented in every community. An astounding 80 percent of children entering the juvenile justice system have mental disorders (Cocozza and Sowyra, 2000). If other states wish to emulate Wraparound Milwaukee, they would need waivers from Medicaid and child welfare requirements. Federal programs should be structured to support proven effective models as the standard approach, not as the alternative, which requires such local ingenuity.

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