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 One: Families and Advocates
July 15, 2003

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

Serious mental illness afflicts millions of our nation's children and adolescents. It is estimated that as many as 20 percent of American children under the age of 17 suffer from a mental, emotional or behavioral illness. Of these, nearly half have a condition that produces a serious disability that impairs the child's ability to function in day- to-day activities. What is even more disturbing is the fact that two-thirds of all young people who need mental health treatment are not getting it.

Behind each of these statistics is a family that is struggling to do the best it can to help a son or daughter with a serious mental illness to be just like every other kid -- to develop friendships, to do well in school, and to get along with their siblings and other family members. These children are almost always involved with more than one social service agency, including the mental health, special education, child welfare, and juvenile justice systems. Yet no one agency, at either the state or the federal level, is clearly responsible or accountable for helping these children.

As a consequence, the mental health and support services these children and families receive are often uncoordinated, inconsistent, intermittent, insufficient and for some - even non-existent.

Recent news reports in more than 30 states have highlighted the difficulties that parents of children with serious mental illness have in getting the coordinated mental health services that their children need. My interest in this issue was triggered by a compelling series of stories by Barbara Walsh in the Portland Press Herald last summer which detailed the obstacles that many Maine families have faced in getting care for their children.

Too many families in Maine and elsewhere have been forced to make wrenching decisions when they have been advised that the only way to get the care that their children so desperately need is to relinquish custody and place them in either the child welfare or juvenile justice system.

When a child has a serious health problem like diabetes or a heart condition, the family turns to their doctor. When the family includes a child with a serious mental health problem, it is often forced to go to the child welfare agency or to court to secure treatment.

Yet neither system is intended to serve children with serious mental illness. Child welfare systems are designed to protect children who have been abused or neglected. Juvenile justice systems are designed to rehabilitate children who have committed criminal or delinquent acts and to prevent such acts from occurring. While neither of these systems is equipped to care for a child with a serious mental illness, in far too many cases, there is nowhere else for the family to turn.

In some extreme cases, families are actually forced to file charges against their child or to declare that they have abused or neglected them in order to get the care that they need. As one family advocate observed, "Beat 'em up, lock 'em up, or give 'em up," characterizes the choices that some families face in their efforts to get help for their children's mental illness.

While no one knows the exact number, child advocates estimate that one in five families with mentally ill children in the United States has surrendered custody in order to receive care for a child with bipolar disorder, schizophrenia, or depression.

Moreover, many child welfare systems make no distinction between children who have been given up in order to qualify for mental health care and those who have been removed from their homes because of abuse or neglect.

These children come from all walks of life and from every income level. In fact, children from middle-class families are likely to be particularly vulnerable because their parents make too much money to be eligible for Medicaid, yet they simply do not have the funds to pay for care once their private insurance coverage has run out. One outpatient therapy session can cost more than $100, and residential treatment facilities can cost $250,000 a year or more. Since many private health plans have coverage that is more restrictive for mental illness than it is for physical illness, these families must pay most of these costs out-of-pocket. This is more than all but the very wealthiest families can afford.

While some states have passed laws to limit or prohibit custody relinquishment, simply banning the practice is not a solution, since it can leave mentally ill children and their families without services and care. Custody relinquishment is merely a symptom of the much larger problem, which is the lack of available, affordable and appropriate mental health services and support systems for these children and their families.

The hearings that the Committee is holding this week will provide an overview of the problem and examine the current barriers that prevent families from accessing mental health services. The Committee will also hear about innovative programs in some states that may help improve access to services for these children and their families and reduce the need for child welfare and juvenile justice placement.

Today, we will first hear from Representatives Fortney "Pete" Stark and Patrick Kennedy who joined me in requesting a General Accounting Office study on this issue entitled, "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."

We will also hear from those living with this challenge day in and day out: the families who have faced these tough choices as they have struggled to get the mental health services that their children need. Finally, we will hear from advocates for these families who will give us an overview of the problem and make recommendations for improving the current system.

On Thursday, we will hear testimony from the General Accounting Office. We will also examine the roles of the various federal agencies and programs that have responsibilities for children with mental health needs, and will examine the extent to which these agencies do or do not work together to meet the needs of these children.

My hope is that these two days of hearings will pave the way for legislative and administrative reforms at both the federal and state level to reduce the barriers to care for children who suffer from mental illness.