NOWHERE TO TURN: HELPING PARENTS SECURE CARE FOR MENTALLY ILL CHILDREN

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, behavioral, or emotional illness. Nearly half of these 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 that two-thirds of all young people who need mental health treatment are not getting it.

The mental health and support services these children and families receive are often uncoordinated, inconsistent, insufficient – and for some, non-existent. 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.

Imagine a middle-class Maine couple whose 16-year-old son has a serious mental illness, such as bipolar disorder. This family has private health insurance coverage. But bipolar disorder requires treatment that is ongoing and expensive, so their insurance benefits are quickly exhausted. This couple earns an average income, so they''re not eligible for Medicaid. Yet they don''t make nearly enough money to pay for mental health treatment that can cost as much as $250,000 a year. Meanwhile, their son's illness progresses; he becomes violent, and the strains on the family become unbearable.

With nowhere to turn, these parents decide to make a sad, even unimaginable, decision: They give up custody of their child to the state child welfare or juvenile justice system so that he can receive necessary mental health treatment. This seemingly unimaginable scenario is not fictitious. Rather, it is a reality forced upon thousands of families across America.

I was so troubled that anyone in America would have to give up custody of a child just so the child could receive vital mental health treatment that I asked the General Accounting Office (GAO) to investigate the matter. I wanted to know how many families were actually faced with this problem and what could be done to remedy it.

In19 states, the GAO found that in 2001 alone, 12,700 children were placed into the welfare or juvenile justice systems so they could obtain the mental health services they needed. In fact, the actual number of children across the country who were voluntarily given up by their parents is likely to be much higher that the GAO's count because many states do not keep track of these children.

A 1999 national survey by the National Alliance for the Mentally Ill of families with children with a serious brain disorder found that 23 percent of the parents surveyed had been told by public officials that they needed to relinquish custody in order for their child to get care. One in five families did so. The GAO described disturbing cases where parents staged abandonment or abuse of their child – sometimes at the recommendation of child welfare workers – so that their children would be placed in a protective custody setting with more access to mental health treatment.

Yet neither the child welfare systems nor the juvenile justice system is designed to care for children with mental illnesses. The child welfare system is intended to protect children who have been abused or neglected. Juvenile justice systems are designed to rehabilitate children who have committed criminal or delinquent acts. The result for many families who give up custody is that their child is placed in a residential care facility, often far from the community in which the family lives.

While no state or federal law requires that parents give up custody of their children to access mental health services, many families are led to believe that they have no other choice. Some states have passed laws to limit or prohibit custody relinquishment. But simply banning the practice is not a solution because it leaves mentally ill children and their families without the services and care they need. What is needed is a coordinated system of community-based and home-based services that would allow child to remain with their families while receiving the care that they so desperately need.

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. Services can be offered by a multitude of organizations and agencies, but rarely is there coordination among providers. States need federal grants and technical assistance to help them develop a "system of care" approach for families to access mental health and other support services, and I intend to offer legislation to do just that. We also must work to expand Medicaid so that it provides more coverage to children who suffer mental illness, and we should require insurers to cover mental illness in the same way they would cover a physical illness.

Having a child with a serious mental illness is an extraordinary challenge, but one which many families across our state and our country must face, day in and day out. We cannot permit a system to continue that forces parents to give up custody of a child just to receive vital help.