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Specialization & Integration

Beyond Integration: Challenges For Children’s Mental Health

Abstract

 
This paper reviews access, outcomes, and quality in the children’s mental health system. We contend that a major focal point of future reforms should be at the organization level of care delivery. We identify five areas for intentional policy action to better infuse quality into the system. We also call for building upon the momentum of recent high-visibility reform proposals and for renewed advocacy to advance quality-linked perspectives into the children’s mental health system beyond its focus on children with severe emotional disturbances.

Today, the system-of-care initiative represents the largest federal investment that targets children with mental health problems: More than $104 million in federal funding annually supports development of systems of care through the Comprehensive Community Mental Health Services for Children and Families program. Most of the 140 grantees focus on the most seriously troubled children and youth and are hosted by communities represented in all states, the District of Columbia, Guam, Puerto Rico, and numerous Tribal Nations and communities. However, these system-of-care sites serve fewer than 70,000 of the 1.3 million children using publicly funded or delivered mental health services.² Some states and counties also fund their own system-of-care initiatives.

Evaluating initiatives. Research on system-of-care initiatives has largely focused on system-level effects.³ National evaluations show reduced reliance on residential placements and hospitalizations (43 percent reduction in lengths-of-stay), improved functioning for children enrolled (42 percent reduction in behavioral problems), and increased use of intensive community-based services.⁴ A recent study demonstrated consistent adherence to system-of-care principles in initiative sites but no improvements in children’s outcomes and no advantage in improved outcomes compared with non-system-of-care sites using services that embodied similar principles.⁵ Despite increased service capacity among system-of-care sites in general, for some community-based and nontraditional mental health services, especially respite care, the system could not meet the demand.⁶ Wayne Holden and Rolando Santiago report that many system-of-care sites fail to integrate decision making at the system level and lack the capacity for continuous self-appraisal at the care-unit level.⁷ This lack of continuous quality improvement has brought into focus the tension between "systemness" and adoption of effective interventions.⁸ Where sites stressed integrating family perspectives, families report higher levels of satisfaction than in non-system-of-care sites.⁹ Sites have been less successful, however, in infusing culturally competent practices into their daily functioning.¹⁰

Broader applications. It is important to note that the system-of-care concept has been applied more broadly than in the mental health system. For example, the federal Maternal and Child Health Bureau recently developed a fifty-state initiative to encourage state agencies with responsibility for young children to integrate health and mental health into the broader early-childhood agenda. Similarly, the federal Bureau of Children’s Services funded a multimillion-dollar demonstration program to develop systems of care in child welfare. Additionally, some initiatives that foster collaboration between mental health and education or juvenile justice using the system-of-care philosophy hold promise for improving services and outcomes. These include a wide range of school-based mental health strategies, from mental health treatment and positive behavioral supports, to addressing underlying issues in the school climate, to social and emotional learning strategies.¹¹ In juvenile justice, these initiatives address mental health prevalence as a core component of reform.¹²

Impact of other policy-linked developments. Other developments have also greatly influenced the current policy context for children’s mental health care. First, a widespread family advocacy movement has emerged, with a state-level presence in almost every state. Bolstered by policy initiatives, funding, and case law, family members—and, increasingly, youth—are embedded in new and different roles in the care system.¹³ For example, in New Jersey, care management organizations now fund family services organizations to promote family support, develop support groups and networks, and reach out to families of children with mental health problems. In Arizona, family support and advocacy form an integral part of the state’s care management system. A recent legal settlement in Pennsylvania provides for an overhaul of services that would increase mental health services in schools and ensure that practice and family supports are supported by research.¹⁴

Second, states oversaw dramatic shifts in fiscal policies for all health and mental health care, linked to the growth of managed care and to greater reliance on Medicaid to underwrite children’s mental health services.¹⁵ Medicaid’s expanded role has led to a number of unintended consequences.¹⁶ First, the fiscal policy changes that shifted mental health care financing from state revenues to Medicaid and that moved children with mental health problems to managed care diminished state mental health policy specialists’ ability to shape reform through fiscal control. The shift to managed care adds further complexity. A survey of managed care programs for children’s behavioral health care showed alignment with system-of-care principles and adoption of evidence-based practices, with greater adherence by carve-out models than by integrated models.¹⁷ Other research shows that child behavioral managed care models reduced access to both intensive institutional and community-based services.¹⁸

States’ diminished control over resource allocation coincided with fewer available resources. Nationally, the median per capita expenditure on children by state mental health agencies in 2003 was $34.18 for community-based services—a smaller commitment than in recent years.¹⁹ Despite a slowing of the rate of growth in Medicaid spending, combined spending on adult and child mental health grew on average by 14 percent in 2000–03.²⁰ Although no national estimates of solely children’s mental health services are available for this time period, according to one study, average Medicaid spending per child receiving mental health services declined slightly during 2000–02.²¹ Fragile state economies and consistent attempts to reduce tax burdens compelled states to choose between using funds to support reform and preserving the status quo.

The third important development related to children’s mental health care is the dramatic growth in research. Some of this research strengthens our knowledge of the links between brain development and mental health disorders; other research expands our understanding of the efficacy of various clinical treatments for many childhood disorders.²² This represents an important base, although there is still much to be learned about existing evidence-based practices, including their effectiveness among youth who are nonwhite; who are from rural, frontier, or poor communities; or who have been diagnosed with multiple mental disorders or with comorbid substance abuse. Gains have also been made in knowledge about the use of psychotropic medication across settings, despite its controversial aspects.²³ Together, knowledge gained about brain development, psychopharmacology, and other clinical treatments provides a perspective on reform that was not central to the initial framework guiding system-of-care development.²⁴ Collectively, developments in systems of care, advocacy, financing, and research must be considered within the context of the children’s mental health system’s ability to deliver on its stated mission if they are to effectively assist continued reform efforts.

The Status Of Children’s Mental Health Today

Top The Status Of Children's... Five Challenges For The... NOTES

 
Access. A review of access to mental health services presents a mixed picture. One study found that only 21 percent of children who needed mental health evaluations received them.²⁵ Other studies point to expanding capacity.²⁶ In the specialty mental health sector, for instance, the proportion of children receiving mental health services increased 69 percent from 1986 to 1996.²⁷ As with system-of-care sites, most children and youth were served in outpatient settings, with hospitals and residential treatment settings serving less than one-third of all youth. In primary care, improved diagnosis capability and removal of financial barriers improved access. As evidence mounts that disorders start earlier in childhood than has previously been acknowledged, the proportion of all primary care visits tripled for children ages 4–17 with a mental health diagnosis between 1989 and 2000.²⁸ In addition, more children with mental health diagnoses were insured, and among the privately insured, out-of-pocket health-related expenses dropped significantly for outpatient services and medications.²⁹

But racial and ethnic disparities remain. African American and Latino children are still more likely than their white counterparts to end up in the most intensive care settings, to underuse certain services, and to achieve poor outcomes.³⁰

Outcomes. The data on outcomes show less promise, although some trends are encouraging. Children with mental health problems do less well in school than do children with other disabilities. Among high school students with disabilities, those with mental health problems were the most likely to receive failing grades (13.6 percent), to be bullies (36 percent), to be the subject of disciplinary action (64 percent), and to have been arrested (35 percent).³¹ Children with mental health problems also have the second-highest high school dropout rates among students with disabilities (44.2 percent). However, this represents a marked improvement from 1987, when such children were still ranked second from the bottom, but almost 61 percent dropped out and only 40 percent finished high school.³² Children with mental health problems in the child welfare system lag behind other children in meeting indicators of safety, permanency, and well-being.³³

Quality. Increasingly, reform efforts focus on quality as a key component of effective mental health services. The emerging framework encompasses four levels: the child and family, service delivery, organization, and policy. Although a full review is beyond the scope of this paper, one paradox at the child and family level is the coexistence of high parent and youth satisfaction within the context of poor outcomes. The care delivery level is characterized by a wide variation in the quality of and settings in which care is delivered, and in the quality and availability of personnel. A maldistribution of providers, lack of diversity in the workforce, and inadequate training exacerbate provider shortages at all levels of the mental health system.³⁴ Of particular concern are findings that "treatment as usual," defined as the best clinical judgment without the use of evidence or manuals, had no effect. Treatment as usual failed to affect specific disorders, including attention deficit hyperactivity disorder (ADHD) and trauma.³⁵ In contrast, specifically focused treatments were effective both on the target of the intervention and on related issues.³⁶ But research also suggests that evidence-based care when implemented in community-based settings produced less promising effects than under research conditions. Early data show that evidence-based treatments are being applied in the field with varying degrees of consistency and fidelity.³⁷ Familiarity with empirically supported practices varies, but even where practitioners received on-the-job training, systematic implementation was not assured.³⁸

Five Challenges For The Future

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Substantial public and private resources are dedicated to improving children’s mental health. What remains unclear is whether we are getting the best return on this investment. Access is improving, but outcomes in the aggregate show only marginal improvement. Recent research indicates poor quality in treatment as usual and lack of uptake or fidelity with the evidence-based practices that we do have. This suggests, consistent with the Institute of Medicine’s report on quality, that one major focus of the next generation of reforms should be on organizational support for improved care delivery that is responsive to families.³⁹ Here we highlight five areas for intentional action at the policy level to inject quality-linked perspectives into the children’s mental health care infrastructure.

Expanding evidence-based practices. One major challenge is overcoming obstacles to the adoption of evidence-based practices. This requires crafting and evaluating infrastructure mechanisms, including incentives to facilitate rapid dissemination and "ownership" of effective treatments. Research under way that tests the impact of manual-based treatments compared with manual-based skills in clinic settings could further our understanding of how to improve adoption of effective practices, but we also need to know which policy levers are most effective.⁴⁰ Are state mandates requiring that funding primarily support evidence-based practices effective? What are the unintended consequences of such measures? What kinds of state and local structures can best support those who provide these services?

Addressing prevention and early intervention. Policy is a blunt instrument. In 1982 the Children’s Defense Fund report Unclaimed Children turned the spotlight on a group of children and youth with the most serious disorders who were largely ignored and underserved by the mental health system.⁴¹ Consequently, this group of children in many places became the sole focus of intervention, thus creating the same kind of short-sighted public policy initially targeted. This approach can no longer be justified, given what we now know about predictors of serious disorders and the emergence of the science of prevention and early intervention.⁴² Thus, a second major challenge requires intervening earlier and more intelligently. Research on risk and resilience demonstrates that effective prevention and early intervention are multipronged and focus on changing the environment and relationships that a child experiences, instead of intervening directly with a child.⁴³ Although this opens up enormous possibilities for effective mental health strategies delivered in settings where children and families are (for example, child care, pre-K programs, and schools), it also poses challenges to the current model, which intervenes primarily with the child directly and has limited funding mechanisms to support effective prevention and early intervention strategies.

Embedding family perspectives into infrastructure. Although important strides have been made in integrating family voices at the service-delivery level, much more could be done. For example, funding for family advocacy is still uneven across states. Few jurisdictions have established mechanisms, let alone institutionalized strategies, such as paying family members and youth who lead family teams or serve as case managers. Fewer jurisdictions relinquish control of funding to families or youth to exercise purchasing decisions. It remains difficult to involve families as key decisionmakers. Even among communities where family involvement is a recognized value, researchers identified family empowerment at the system decision-making level as the source of much dissension.⁴⁴ Further, a challenge only recently explored in the literature and in practice remains how to integrate the family-treatment perspective into both the child and adult mental health systems. Under most current practice, adults with mental health and substance abuse conditions are rarely asked if they have children, although research suggests that the vast majority of adults with serious mental illnesses are parents.⁴⁵ Parental disorders such as depression pose serious risks to outcomes for children, and evidence-based preventive strategies exist to mitigate these risks.⁴⁶ Family-based treatments for adolescent substance abuse are also effective.⁴⁷ Yet paying for family-focused interventions through either the child or adult behavioral health care system remains difficult.⁴⁸

Strengthening accountability mechanisms. The recent IOM report highlights the importance of building a data-driven accountability system to propel both clinical and system-level decision making that improves the quality of care.⁴⁹ However, most of the energy to develop the appropriate information technology (IT) and build needed infrastructure has been focused on adults. Despite some work to build consensus on indicators relevant for youth, these do not focus on functional outcomes across systems.⁵⁰ Moreover, efforts to boldly chart an IT plan that meets the needs of children irrespective of their service settings face concerns about privacy and undue interference in the technology marketplace. Mental health lags behind the rest of health care, with many mental health facilities lacking even computerized medical records.⁵¹ Key obstacles to advancing state-of-the-art IT include inadequate human resource capacity, lack of capital, and the myriad settings in which mental health care is delivered. Stakeholders in the children’s mental health community must link more actively with ongoing efforts focused on adult mental health issues and build a child- and family-focused vision for data management systems that track outcomes in near real time for children and their families.

Aligning fiscal and best treatment practices. Current fiscal practices severely hamper programmatic efforts to move systems forward. Many states do not purchase services and supports that are consistent with either evidence-based practice, a family-centered delivery system, or, sometimes, common sense. Few states pay higher rates if providers use evidence-based treatments. In other cases, federal policies outright prohibit funding for strategies designed to foster service integration.⁵² Other policies serve as disincentives to providing family-focused care. For example, fiscal barriers often impede having families serve as case managers. Some states do not fund family therapy even for infants and toddlers. In some cases, fiscal rules and regulations prohibit funding of specific strategies that require funding flexibility and foster continuity of care. For example, children and youth who are incarcerated generally cannot access Medicaid funding to support needed mental health services during the time of their commitment, and they often are not re-enrolled upon release. Moreover, wide variations exist in interpretation and implementation of Medicaid funding to support pre-adjudicated youth (that is, mainly youth in detention).⁵³ Only a few states pursue the flexibility afforded them through home and community-based waivers for children with mental health problems. Other regulations limit payment for providers to physicians or to only office-based settings, thus further undermining organizations’ ability to appropriately use scarce staff or to provide care in settings most accessible for children and families. Still others prohibit funding of respite care or other support services. Although the list of such fiscal practices is quite lengthy, some states do find ways to overcome some of the fiscal barriers and reduce the gap between what evidence and best practice suggest should be funded and what actually gets funded. Where relief from the federal government has been offered, its scale has not matched the need or the rhetoric. In fiscal year 2006 the government did announce an expansion of Medicaid reforms to include new funding for respite services under the home and community-based demonstrations directed at children with severe disabilities.⁵⁴ Other efforts to increase flexibility and funding, whether under the state infrastructural, system-of-care, or community mental health block grants, have been short-lived, because these funding streams face budget cuts or were maintained at current levels for FY 2007. This state-by-state approach at both the federal and state levels results in an uneven pattern across states and means that access to practices reflecting state-of-the-art knowledge is bounded not by knowledge but by geography. Getting funding in sync with knowledge that is responsive to research findings and family input is key to real system improvement.

THIS IS AN IMPORTANT TIME for children’s mental health care, with a new vision set forth by the President’s New Freedom Commission report that calls for a public mental health system.⁵⁵ But the devil is in the details. Balanced social policy demands that mental health policymakers move beyond the rhetoric of transformation accompanied by piecemeal, often time-consuming initiatives with limited or no funding or inflexible funding that only tweaks systems at their edges. Policymakers must initiate bold measures based upon new knowledge and continuous self-appraisal. Such reform must fundamentally change the financing structures and must focus on organizational issues in service delivery with an outcome-oriented approach that encompasses promotion of healthy outcomes, prevention of problems, early intervention, and, when necessary, more-intensive treatment. To pursue this important agenda requires focused policy and advocacy attention to the five challenges highlighted here, especially how mental health resources are used. "Smarter" investing is a wise strategy for society and an urgent strategy for the children and families who are coping daily with mental health challenges.

Editor's Notes

 
Jane Knitzer (jk340{at}columbia.edu) is director of the National Center for Children in Poverty, Mailman School of Public Health, Columbia University, in New York City, and clinical professor of population and family health at the Mailman School. Janice Cooper is a senior research associate at the National Center for Children in Poverty and an associate research scientist at the Mailman School.

The authors are grateful for helpful suggestions from two anonymous reviewers on earlier drafts.

NOTES

Top The Status Of Children's... Five Challenges For The... NOTES

 

1. J. Knitzer, Unclaimed Children: The Failure of Public Responsibility to Children and Adolescents in Need of Mental Health Services (Washington: Children’s Defense Fund, 1982); and B.A. Stroul and R. Friedman, A System of Care for Children and Youth with Emotional Disturbances (Washington: Georgetown University Child Development Center, 1986).
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34. F.F. Duffy et al., "Mental Health Practitioners and Trainees," in DHHS, Mental Health, United States, 2002, 327–368; and M. Hoge, "Creating a National Strategic Plan for Behavioral Health Workforce Development" (Presentation at the Eighteenth Annual Research Conference: A System of Care for Children’s Mental Health: Expanding the Research Base, Tampa, Florida, March 2005).
35. T.C. Hanson et al., "The Prevalence and Management of Trauma in the Public Domain: An Agency and Clinician Perspective," Journal of Behavioral Health Services and Research 29, no. 4 (2002): 365–380[CrossRef]; and Hoagwood et al.,, "Treatment Services for Children with ADHD."
36. Weisz et al., "Promoting and Protecting Youth Mental Health."
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40. Weisz et al., "Promoting and Protecting Youth Mental Health."
41. Knitzer, Unclaimed Children.
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