Designing Systems of Care that Work for Children with Special Health Care Needs

Community Services

Mental health services are a critical element of a comprehensive, integrated system of care for children with special health care needs (CSHCN). In addition to children whose primary diagnosis is a behavioral or emotional disorder, many children with primarily physical conditions (and their families) also need counseling to help them deal with the emotional effects of their conditions, including depression and anxiety. However, the mental and physical health care systems are rarely coordinated, and providers of pediatric health care may not be familiar with children's mental health needs or the resources available to serve them.

Research on Mental Health Services

To begin to address this information gap, economists at RAND recently studied children's access to and use of mental health services and assessed the level of resources being expended on mental health care. The study combined data from a number of sources, including the Urban Institute's National Survey of America's Families, the Community Tracking Study, claims databases, the Inventory of Mental Health Organizations, AHRQ's Healthcare Costs and Utilization project, Medicaid statistics, and State mental health agencies.

This study found that:

• Between 5 and 7 percent of youth use mental health services. This proportion is highest among school-aged children (ages 6 to 11) and adolescents. Children covered by Medicaid are more likely to use services than those with private insurance, and Hispanic children have the lowest rates of mental health service use compared to other racial or ethnic groups.
• Disparities in access to services exists across racial groups, insurance status, and geography. A substantial share of children who could benefit from mental health services do not receive any.
• Expenditures for children's mental health services in 1998 totaled $11.7 billion; nearly two-thirds of this total was devoted to outpatient services, and more than $1 billion was spent on prescription drugs.

Further research is still needed on the quality and effectiveness of children's mental health care, along with a better understanding of the services provided in non-medical settings, such as schools, juvenile justice facilities, and child welfare systems.

Integration of Mental Health Services

At the community level, attempts have been made to better integrate mental health services into systems of care for CSHCN.

Livingston County, Michigan, took advantage of the change in the culture of service delivery that came about as the result of new local, State, and federal directives in the 1990s. In order to better blend resources and integrate services, the county created the Human Services Collaborative Body (HSCB), a group of director-level personnel. The HSCB was further divided into work groups that concentrated on specific populations and their needs. The county was also granted a 1915(a) waiver for children with and at risk of behavioral disorders, providing a source of Medicaid funding for integrated services.

These structural changes have improved families' access to a range of services, including Early Intervention, child care for CSHCN, and respite. These results were said to have been "phenomenal." However, these systemic improvements are being threatened by the impact of Medicaid managed care on the continuum of community mental health services, and by the ongoing challenge of collaboration across the county's systems.

From the perspective of the family, mental health services are a necessary component of a system of care for CSHCN. Unfortunately, according to the Florida Institute for Family Involvement (FIFI), mental health services for CSHCN are not provided through an organized system but through "random acts of services." When their child is first diagnosed, families typically feel overwhelmed, overcome with fear, and exhausted, and are focused on their child "getting better." As they become accustomed to their child's condition, these families must learn how to build a balance, to "recreate" their home and family, and how to seek answers and developing solutions.

CSHCN themselves often struggle with emotional stability, self-image issues, peer relationships, maturity levels in relation to their peers, and victimization by others, all concerns that often require professional mental health services. However, children and their families face a number of obstacles to receiving these services, including insufficient funding, strict eligibility criteria, a general lack of recognition of the problem, and attitudes and stigma associated with mental health care.

To address these issues, FIFI recommends that:

• Mental and emotional health services be part of the comprehensive package of services available to CSHCN.
• Funding streams be cooperative or blended.
• Providers be educated on the emotional needs of children and their families.
• Family education and support services start early in the treatment process.
• Infant mental health and early brain development theories be built upon to extend to CSHCN.

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