OPENING STATEMENT OF
SENATOR SUSAN M. COLLINS
CHAIRMAN
COMMITTEE ON GOVERNMENTAL AFFAIRS

Nowhere to Turn:
Must Parents Relinquish Custody in Order to Secure Mental
Health Services for Their Children?
Day Two: Government Response

July 17, 2003

This is the second of two hearings that the Committee on Governmental Affairs is holding this week to examine the difficult challenges faced by families of children with mental illnesses.

On Tuesday, we heard compelling testimony from three such families who told the Committee about their personal struggles to get mental health services for their severely ill children. The mothers who testified told us they were advised that the only way to get the intensive care and services that their children needed was to relinquish custody and place them in the child welfare system.

This is a wrenching decision that no family should be forced to make. No parent should have to give up custody of his or her child just to get the services that the child needs.

The testimony that we heard on Tuesday made it clear that custody relinquishment is merely a symptom of a much larger problem, which is the lack of available, affordable and appropriate mental health services and support systems for these families.

The mothers described the barriers they faced in getting care for their children. They told us about limitations in both public and private insurance coverage for mental illness. While two of the mothers made too much money to qualify for Medicaid, their private health plans had coverage that was more restrictive for mental illness than it was for physical illness. As a consequence, their benefits were quickly exhausted, and they were faced with the prospect of paying for the costs of their children’s care - which amounted to thousands and even hundreds of thousands of dollars. This is more than all but the very wealthiest families can afford.

They also talked about the lack of coordination and communication among the various agencies and programs that serve children with mental health needs. One parent, desperate for help for her twin boys, searched for two years until she finally located a program-which she characterized as “the best kept secret in Illinois”-that was able to help.

Parents should not be bounced from agency to agency, knocking on every door they come to, in the hope that they will happen upon someone who has an answer. It simply should not be such a struggle for parents to get services and treatment for their children.

Today, we will be hearing first from the General Accounting Office, which recently completed a report that I requested with Representatives Pete Stark and Patrick Kennedy titled “Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services.”

The GAO surveyed child welfare directors in all states and the District of Columbia, as well as juvenile justice officials in the 33 counties with the largest number of young people in their juvenile justice systems. According to the GAO survey, in 2001, parents placed more than 12,700 children into the child welfare or juvenile justice systems so that these children could receive mental health services.

Moreover, the GAO estimate is likely just the tip of the iceberg, since 32 states - including the five states with the largest populations of children - did not provide the GAO with any data.

There have been other studies indicating that the custody relinquishment problem is pervasive. In 1999, the National Alliance for the Mentally Ill released a survey which found that 23 percent - or one in four of the parents surveyed - had been told by public officials that they needed to relinquish custody of their children to get care, and that one in five of these families had done so.

We will also hear today from federal agencies that have responsibilities for children with mental health needs. We will have the opportunity to hear how these agencies work to respond to the needs of children with serious mental or emotional disorders and their families. Finally, we hope to identify ways that these agencies can better work together to develop more coordinated systems of care for these children at both the federal and State level so that parents-such as the ones we heard from on Tuesday-will know where to turn to get the help that their children so desperately need without having to sever the ties that bind families together.