Testimony of Congressman Patrick J. Kennedy
Senate Committee on Government Reform
342 Dirksen Senate Office Building
July 15, 2003

Thank you, Madame Chairman and Senator Lieberman, for the opportunity to address the committee today and for holding this hearing to shed light on one of the unsung tragedies that afflicts our nation's families. I also must acknowledge my colleague, Pete Stark, who has shown unflagging leadership on this issue for many years. He has set his sights on this injustice, which makes me confident we will eventually eradicate it.

This hearing is about betrayal. We profess to be a nation that values families, but there are families we drive apart. We claim to care about children – how often are children invoked in our political rhetoric? – but we snatch away hope and opportunity from kids with certain health care needs. The gap between our words and our actions is measured in children, children whose parents are forced to relinquish custody to the state in order to save them.

You are going to hear from parents who can paint a much more poignant and tragic picture than I can of the suffering they and their children endure. Instead, I want to speak briefly about how these families wind up in this situation and what we can do about it.

Every day in every one of our communities, babies are born who are the center of universes. Their parents revolve around these new lives, eager to give every opportunity to their children. Sometimes, though, fate is cruel, and the babies grow up and develop health problems. Maybe a heart problem. Maybe leukemia. Or maybe a serious mental illness.

Those parents will do anything they can to help their babies, even if those "babies" are now toddlers, or school age, or teenagers. If the center of their universe needs help, those parents will move heaven and earth to get them the treatment they need.

For kids with physical health problems, our system can be far from perfect, but in moments of crisis, care is available. Not so for children or adolescents with mental illnesses. The kids with mental illness are also people's babies. They are also the center of their parents' universes. But when their lives are in jeopardy, we betray them.

We betray them by pervasive discrimination in health insurance. The growing body of science on the biochemical underpinnings of mental illness notwithstanding, nearly all health plans require much more extensive cost sharing for mental health care than for physical health care. Nearly all health plans put strict limits on the amount of treatment they will cover for mental illnesses. Imagine refusing to cover the twenty-first visit to the cardiologist or the thirty-first day in the hospital for cancer treatment.

Thousands upon thousands of parents live in terror of the day their child's insurance runs out. And rightly so. Mary Ellen Clausen of Syracuse faced $30,000 monthly bills to pay for care for her two anorexic daughters. How many families can afford that cost? Parents pay their hard-earned money for health insurance so that it will be there when their family is in need, but too often they are horribly disappointed.

We further betray these families by failing to provide a safety net. When parents are failed by the private health care system, either by being excluded altogether or by exhausting their benefits, they should expect that at a moment of desperation, a public system will help their children. Even the uninsured, after all, have access to emergency room care and we surely would not allow a child with a diagnosed, potentially fatal disease to go without treatment.

But in fact, our public mental health care system is, in the words of the President's New Freedom Commission on Mental Health, "in shambles." While mental illnesses are the second leading cause of disability in the United States, our funding for community-based services has actually fallen in real dollars in recent years. Nationally, we spend less than eight percent of our health care dollars on mental health care.

The underfunding of our system necessarily translates into lack of access for families in crisis. The access problem is compounded by abysmal reimbursement rates for providers of mental health care. In Rhode Island, I hear many stories of mental health professionals who simply cannot make ends meet while contracting with the public systems or taking insurance, and I understand that this phenomenon is common. And so in communities across the country, especially rural and inner-city urban areas, shortages of child psychiatrists, psychologists, and other professionals mean months-long waiting lists, even for children in crisis.

These access problems are made worse by bureaucratic obstacles and federal mandates which prevent states from implementing the systems of care approaches that have proven to be most effective – and most cost-efficient. Moreover, Medicaid, a large payer for mental health care, is statutorily unable to keep up with the shift from institutional to community-based services for children with mental illnesses. Medicaid is therefore not an option for most middle-class families in this situation, even when they face insurmountable mental health costs.

The result of these betrayals is that many parents simply have no way to get their children the care they so desperately need.

The horrible position this puts parents in is hard to fathom. Their child may be suicidal, may be posing a risk to other children. They watch the broad horizon of possibility they have dreamed of for their child shrinking, becoming ever narrower as his disease impairs his ability to learn in school. Relationships suffer and families are stretched to the breaking point.

And so these parents are forced to do the hardest thing imaginable: give their babies over to strangers. No good, loving parent should ever be in that position. It is barbaric that we break up families like this.

There must be a better way than telling parents that we will only give their children the care they need if they sacrifice custody to the state.

We clearly need to devote more resources to mental health care, both public and private, and I have fought and continue to fight to improve mental health funding on the House Appropriations Committee. But large increases in mental health funding are not necessary to solve at least the narrow problem of custody relinquishment.

There have been major advances in understanding how to best treat these kids with serious mental illness. There are great models around the country of collaborative efforts across agencies, working closely with families to help them give their children the necessary care. For the amount of money we spend on these kids – through child welfare, juvenile justice, special education, Medicaid, and so on – we can accomplish much more than we do. We need to give states the incentive and the flexibility to use their dollars to ensure that kids get the treatment they need without snatching them out of their homes and families.

Madame Chairman, it has been a pleasure to work with you and my good friend Mr. Stark to craft a solution along these lines. I hope that we can continue to work together in a bipartisan, bicameral fashion to put in place policies that will strengthen rather than pull apart America's families.

Thank you.

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