Statement of
Senator Susan M. Collins

Bazelon Center Luncheon

December 2, 2003

Thank you for that kind introduction and warm welcome, and thank you, Tonya, for this wonderful painting. You obviously are tremendously gifted, and I am honored to be recognized in this way for my work on behalf of children with mental health needs. It has been my pleasure to work in partnership with the Bazelon Center on these issues that are so important to millions of our nation's children and their families.

As you know all too well, 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. What I find most disturbing, however, 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 serious mental health needs to be just like every 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 and their families.

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 desperately needed mental health services 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.

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. 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.

Judy Woodruff mentioned the GAO report that I requested with Representatives Pete Stark and Patrick Kennedy that found that, 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.

I believe that this is 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 even more pervasive. A 1999 survey by the National Alliance for the Mentally Ill found that 23 percent – or one in four parents surveyed – had been told by public officials that they needed to relinquish custody of their children to get care, and that one if five of these families had done so.

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 lace of available, affordable, and appropriate mental health services and support systems for children with serious mental health needs and their families.

At the hearings I chaired in the Governmental Affairs Committee last summer, we heard compelling testimony from mothers who told us that 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 mothers also described the barriers they faced in getting care for their children. They told us about the limitations in both public and private insurance coverage. 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.

The Keeping Families Together Act, which I have introduced with a bipartisan group of my colleagues, will help to reduce the barriers to care for children with serious mental health needs and will assist states in eliminating the practice of parents relinquishing custody of their children solely for the purpose of securing mental health services.

The legislation authorizes $55 million for competitive grants to states to create an infrastructure to support and sustain statewide systems of care to serve children who are in custody or at risk of entering custody of the State for the purpose of receiving mental health services. States already dedicate significant dollars to serve children in state custody. These Family Support Grants will help states serve children more effectively and efficiently, while keeping them at home with their families.

The legislation will also remove a current statutory barrier that prevents more states from using the Medicaid home and community-based services waiver to serve children with serious mental health needs. This waiver provides a promising way for States to address the underlying lack of mental health services for children that often leads to custody relinquishment. While a number of states have requested these waivers to serve children with developmental disabilities, very few have done so for children with serious mental health conditions. Our legislation will provide parity to children with mental illness by making it easier for states to offer them home- and community-based services under this waiver as an alternative to institutional care.

The Keeping Families Together Act takes a critical step forward to meeting the needs of children with mental or emotional disorders and their families. By working together, I am hopeful that we will generate sufficient support for this legislation to get it passed by the House and Senate and signed into law next year.

Again, thank you for inviting me to be with you this afternoon, and I look forward to continuing our fight to ensure that affordable and appropriate mental health services and support systems are available for all children with mental health needs and their families.