Innovative state and local programs could cut inappropriate adolescent mental health placements

The investigative agency of Congress said that in 2001, more than 12,700 children were placed in the child welfare or juvenile justice systems by their parents just to receive needed mental health services. The General Accounting Office (GAO) said systems were not designed to serve children who have not been abused or neglected, or who have not committed a delinquent act.

The agency recommended that innovative programs at the local and state level that show promise for reducing the need for such placements be evaluated and encouraged.

Representatives of two leading mental health advocacy organizations praised the report, which was prepared for Sen. Susan Collins (R-ME) and U.S. Reps. Pete Stark (D-CA) and Patrick Kennedy (D-RI). Both groups have published studies about parents who find that surrendering custody of their children is often the price they must pay for mental health care.

"The problem is a national tragedy," says Darcy Gruttadaro, national director for the Arlington, VA-based National Alliance for the Mentally Ill’s (NAMI) Child & Adolescent Action Center. "It is a moral, economic, and political scandal."

She says the GAO findings support a NAMI study published in 1999 in which 20% of families surveyed reported having to give up custody of children to states in exchange for adequate treatment.

Laurel Stine, federal relations director for the Bazelon Center for Mental Health Law in Washington, DC, says custody relinquishment "is absolutely devastating to families. Children with mental health needs face the added stress of being displaced and feeling abandoned. Meanwhile, parents have to give up their say about key aspects of their children’s lives, like where or whether they go to church and how late they can stay up at night."

Ms. Stine says the GAO’s figures "may be the tip of a much larger iceberg" because many states did not provide data to GAO investigators, but indicated that such placements do occur.

The GAO report identified a number of factors (see box, below) that influence parents’ decisions to relinquish custody:

• Gaps in and limits on mental health coverage. Some mental illnesses are not covered, and families often face limits on the intensity or duration of care that private insurers will pay for. Medicaid covers a limited number of children who could benefit from mental health services. Both public systems and private insurers often fail to cover the intensive community-based services that could reduce the need for more expensive residential treatment.

• Limited child mental health resources. The GAO said that parents may be encouraged to take drastic measures to make their children a priority for scarce mental health resources.

• Lack of coordination. Eligibility requirements for services often differ between agencies, making it difficult for children to obtain coordinated care. Also, the agency said, some services providers and officials have "misunderstood the role of their own and other agencies," and have given parents incomplete or inaccurate information, creating service gaps for children with mental health needs, the agency said.

Factors Influencing Placement

Source: U.S. General Accounting Office, Washington, D.C.

According to the survey of state child welfare directors, placed children are more likely to be boys than girls and are more likely to be adolescents. "Child welfare directors in 19 states reported that in fiscal year 2001, 65% of placed children were male, and 67% were between the ages of 13 and 18," the report said. "While juvenile justice officials could not provide information about the gender and ages of children placed in their system, most children in the juvenile justice population are male and range in age from 13 to 18."

Children who were placed were described as having severe mental illnesses, sometimes in combination with other disorders. Parents of the children believed that they needed intense treatment that could not be provided in their homes. Many of the children were described as violent, having tried to hurt themselves, their parents, or their siblings, and often preventing their parents from meeting the needs of other children in the family.

Children who are placed or at risk of placement come from families that span a variety of economic levels.

The GAO reported that although few strategies have been developed specifically to prevent mental health-related child welfare and juvenile justice placements, state and local officials identified a range of practices that they say may prevent such placements by addressing key issues that have limited access to child mental health services in their state. Although some programs were modeled on practices that had been evaluated in other settings, the effectiveness of the practices is unknown because many of them were implemented on a small scale in one location or with a small target group or were too new to be rigorously evaluated.

Officials in six states that were visited by GAO staff (Arkansas, California, Kansas, Maryland, Minnesota, and New Jersey) said that one way to reduce the cost of services is to better match children’s needs to the appropriate level of service. The report said that one goal of some of the programs reviewed was to ensure that children with lower-level needs were appropriately served with lower-level and less expensive services, reserving more expensive services for children with more severe mental illnesses.

The report highlighted New Jersey’s Systems of Care Initiative through which the state contracted with a private, nonprofit organization for a variety of services such as mental health screenings and assessments to determine the level of care needed, authorization of service, insurance determination, billing, and care coordination across all agencies involved with children. When the initiative is expanded statewide from its current five out of 21 counties, the contractor in each county will use standardized tools to assess children’s mental health and uniform protocols to determine appropriate levels of care. Children requiring lower levels of care will be referred to community-based providers, while children requiring a higher level of care will be approved to receive services from local care management organizations specifically created to serve them.

As another cost-saving method, the GAO said, some programs substituted expensive traditional mental health providers with nontraditional and less expensive providers. Officials in New Jersey, Kansas, and Minnesota reported that they had started using less expensive providers, such as using nurses to distribute medications rather than psychiatrists and bachelor’s-level workers for case management instead of master’s-level social workers.

Officials in five states also recommended increasing use of volunteer and charitable organizations to reduce the cost of services because these organizations can provide inexpensive or free supportive services to children with a mental illness and their families. While the services were not therapeutic, they helped families cope with problems associated with mental illness and kept some mental health problems from escalating.

An example cited in the report is the Four County Mental Health Center in Kansas that used volunteers from churches, community agencies, and charities such as the Salvation Army to provide services such as mentoring and tutoring for children with a mental illness.

In addition to reducing the cost of services, state officials in all six states visited identified the blending of funds from multiple sources as another way to pay for services, thus working around agencies’ limitations on the types of mental health services and placement settings each can fund. The report discussed a Maryland county with a coordinating council headed by a local judge that blends funds from multiple agencies to provide community-based services to children with a mental illness involved with the judicial, child welfare, and mental health systems and with district special education programs. The council leveraged funding by inviting decision makers who could commit resources from a variety of child-serving agencies and organizations to serve on the council.

Officials in four of the six states also pointed to use of flexible funds, with few restrictions, to pay for nontraditional services that generally are not allowable under state guidelines. For example, Arkansas’ Together We Can program used flexible funds from a federal social services block grant, state general revenue, and the Title IV-B program to provide a wide range of nontraditional supportive services and items to children with a mental illness and their families. The program provided services and items such as in-home counseling, community activities, respite care, mentoring, tutoring, clothing, and furniture that helped the family care for the child at home and supported the child in the community.

To improve access to mental health services and bring clarity to a confusing system, three of the states developed a facility to be a single point of entry into the mental health system. Typically, several agencies are represented at the facility and children are assessed with a common instrument and eligible for the same services regardless of which agency has primary responsibility. One example of this effort is Kansas’ Shawnee County Child and Family Resource Center, a one-stop facility that houses workers from 11 social service agencies, including mental health, child welfare, juvenile justice, and education. All children with mental health needs, regardless of which agency first encountered them, are referred to the center. Center case managers assess each child’s psychological, educational, and functional needs, determine appropriate services and placements, make referrals, provide some direct counseling services, and determine how to pay for services. The facility even has four bedrooms for children who need to be removed from their home for a short period and a secure juvenile justice intake suite staffed 24 hours a day. County officials told GAO investigators that the center ends service fragmentation and prevents duplication of services for children with a mental illness and their family by implementing one intake procedure for all county social services.

State officials in all six of the visited states cited the value to improved access of colocating services in public facilities such as schools and community center. Los Angeles County officials in California have found that integrating mental health services into the school system has been a very effective way of reaching poor families without transportation and working families, helping to ensure regular participation in mental health services.

In Maryland’s Hartford County, mental health services are colocated at an elementary school specifically to improve access to care for students with mental illness. The school used county health and mental health funds to provide mental health services through a bachelor’s-level social worker, a nurse practitioner, and consulting services from a physician and psychiatrist. The school also has internal support staff available to children with mental illness, including a guidance counselor, behavioral specialist, home visitor who supports families and assesses the home situation, and a pupil personnel worker who visits homes and helps with transportation issues.

The report says that officials in all six of the visited states identified expansion of the number and range of community-based services to provide an entire continuum of care as a way to improve treatment for children with a mental illness.

Meanwhile, the president’s New Freedom Commission on Mental Health released an outline of its report scheduled to be presented to President Bush at the end of April, ending the commission’s one-year lifespan. The commission’s vision statement said it is committed "to a future where recovered is the expected outcome and when mental illness can be prevented or cured. We envision a nation where everyone with a mental illness will have access to early detection and the effective treatment and supports essential to live, work, learn, and participate fully in their community."

Among the recommendations to be included in the report:

  • Advance and implement national strategies for suicide prevention and a national campaign to reduce the stigma of seeking care.
  • Strengthen early childhood mental health interventions by implementing a national effort to focus on mental health needs of young children and their families that includes screening, assessment, intervention, training, and financing of services.
  • Screening, assessment, and treatment for co-occurring disorders should be the expectation in mental health, substance abuse, child welfare, criminal and juvenile justice, and primary care settings.
  • Screen for mental disorders in primary care settings across the lifespan.
  • States should ensure that each adult with serious mental illness and each child with serious emotional disturbance and his or her family have a single, individualized plan of care.
  • Create an integrated state plan for treatment and support.
  • Expand the recovery orientation of the system of care by increasing the opportunities and capacities of consumers to share their inspiration, knowledge, and skills.
  • Strengthen and expand supported employment.
  • Protect and enhance rights.
  • Expand criminal justice and juvenile justice diversion and re-entry programs.
  • Reform financing for Medicaid and Medicare.
  • Improve access to housing and end chronic homelessness.
  • Accelerate research to cure or prevent mental illness.
  • Expand knowledge base to inform policy designed to reduce mental health disparities, long-term effects of medications, and develop process to study crisis interventions and acute care.
  • Test evidence-based practice interventions in demonstration projects.
  • Increase and improve a diverse mental health work force.
  • Use information technology to improve care.
  • Establish funding incentives for recruitment and retention of mental health professionals in rural settings.
  • Through a public and private partnership develop and implement comprehensive public health policies that reduce barriers to access, improve community outreach and engagement, and ensure development of culturally competent care to racial and ethnic minorities.

[For the GAO report, go to: www.gao.gov. Contact NAMI at (703) 524-7600 and the Bazelon Center at (202) 467-5730. For information from the New Freedom Commission, go to: www.mentalhealthcommission.gov.]