Overview

My dearest wish is for my son to be able to be maintained at home. He’s been at residential facilities and hospitals on and off since he was seven years old. I have asked for support from the county and have been denied any kind of financial support. I’ve been denied and told that there were no services available, period, to maintain him in the home. The county had the money to maintain him in a residential facility or a hospital, but not maintain him at home. (New York parent)

Serious mental disorders affect millions of children. According to the United States Surgeon General, as many as 11 percent of all children in the United States have a mental disorder that significantly impairs their day-to-day functioning.1 Most of these children can live at home if they and their family receive at least a minimal level of appropriate services. Indeed, a wide range of effective treatments exists for children with mental health care needs,2 and the effectiveness of services for children with the most serious disorders has improved significantly over the last decade.

As the President’s Commission on Mental Health has stated, “mental illness is very common and very disabling” but “with effective treatment, services and the support of families, friends and communities, the possibility of recovery is no longer elusive.”3 The words of the parents quoted in this report make it clear that many families are willing to go to extraordinary lengths to care for their child at home. But to provide the support that the President’s Commission finds necessary, they need the help of the public mental health system—generally funded through the Medicaid program.

With a quarter of the country’s children enrolled in Medicaid,4 the program has become an extremely important source of funding of all public health care for children and now provides half of all spending on public mental health systems. In 1999, the Bazelon Center for Mental Health Law reviewed states’ Medicaid service definitions and produced a report on the recent expansion of child mental health services in state Medicaid plans.5 That report documents how, over the past decade, states have adjusted their Medicaid programs to include a wider array of effective home- and community-based mental health services for children. States use several Medicaid categories to cover both basic mental health treatment (e.g., therapy, medications and crisis services) and intensive community services, such as case management, in-home services, day treatment, mentors and therapeutic foster care.

Under Medicaid’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) mandate, children enrolled in the program are entitled to any medically necessary Medicaid mental health service. But describing a service in the state’s Medicaid plan is only the first step to providing access. Whether children can obtain those services when they need them depends also, and crucially, on whether the service is more than a commitment on paper—whether it is actually available in the community.

In 2002, with support by the William T. Grant Foundation, the Bazelon Center undertook to examine whether Medicaid-eligible children were, in fact, receiving an expanded range of services in their communities. As one aspect of our investigation, we wanted to learn first-hand how parents of children with the most serious mental disorders perceived their child’s access to needed services. Working with local advocates, the Bazelon Center convened focus groups of parents with children in two states with relatively comprehensive Medicaid plans, New York and Oregon.6 This report summarizes findings from the 68 parents of 86 children and adolescents who took part in the six focus groups. (For more information on the focus groups, see appendix.)

We chose Oregon and New York because, compared with other states, they have described a relatively strong mental health benefit for children in their Medicaid rules. Yet they differ in organization of their Medicaid programs. While most Medicaid-eligible children with serious mental or emotional disorders continue to be served through traditional fee-for-services arrangements, some states have shifted all or part of their child mental health services to managed care programs. We wanted to learn about differences, if any, between a fee-for-service state and a managed care state. Oregon has a managed care Medicaid system while in New York, Medicaid services for children with serious mental disorders are funded through fee-for-service. However, the similarity of the parents’ accounts in the two states suggests that the differing structure of the programs has little effect on the ground.

The array of services listed in each state’s Medicaid plan is described elsewhere in this report. On paper, New York and Oregon describe a wide range of intensive community services for children through the psychiatric rehabilitation services category of Medicaid, but many parents in both states reported that their children seldom had access to more than basic medical and therapy services. Intensive community supports through day treatment, in-home services, case management, therapeutic foster care and other services are written into each state’s Medicaid benefit, but the parents in the focus groups found these largely unavailable or, when offered, provided in insufficient amount to be effective. Few of the parents said their children received a package of services that included both medical care and necessary rehabilitation services.

In both states, the families of the children who were able to secure such a service package—often only after persistent advocacy—expressed satisfaction with Medicaid and reported that their children were progressing relatively well, demonstrating that children do better when systems provide effective evidence-based services in sufficient range and amount.

Next: The Parents' View