Mental Health Association in New York State, Inc.
(Publication Archives)

Friday Fax from Albany

Actions Speak Louder: With only 10 session days left before the Senate adjourns for the year, concern is growing that Timothy’s Law may not be acted upon again this year. Although the Senate first introduced Timothy’s Law a year ago, and held a press conference to announce their own parity proposal three weeks ago, no action has been taken in the Senate to secure passage of the anti-discrimination law.

We have waged a valiant two-year effort to secure the passage of this bill, named for a child, representative of so many others in need, who took his own life for want of comprehensive mental health insurance coverage. Yet, all of our efforts have, as of yet, not brought success.

We are quickly approaching a time when legislative business could shut down on our bill – the same way that treatment was shut down for Timothy O’Clair by his family’s health insurance. We are tired, worn and even a little fractured. But, with three weeks (only ten session days) left, we need to muster the energy and strength for one more push.

We can find our inspiration in the O’Clair family. For the millions of New Yorkers whose lives could be improved by Timothy’s Law, we must fight on, just as the O’Clairs did for Timothy. Like them, we must not give up, must not walk away in despair – we must do all we can.

If you truly believe that Timothy’s Law must be passed,
then you must act.
You must advocate like you never have before.

Demand that the Senate not come home
without passing Timothy’s Law!!

For your children, for our children, for Timothy, the child of Tom and Donna O’Clair, you must advocate like there is no tomorrow. For as far as Senate session goes, that isn’t far from true.

In the News:

Mentally ill kids adrift in system. By Marilyn Elias
USA Today, June 2, 2004

The safety net of care for children with mental disorders is badly frayed and even torn open in some spots, leaving many kids untreated or in a dangerous free-fall on treatments that don't work, mental health experts agree.

"There's been a scientific failure and a policy failure and a financing failure," says Michael Hogan, director of the Ohio Department of Mental Health and chairman of the President's New Freedom Commission on Mental Health.

About one of five Americans younger than 18 has a diagnosable mental disorder, according to the U.S. surgeon general's 1999 report on mental health. About one of 10 have serious, impairing mental illnesses, such as major depression and anxiety disorders, and fewer than 20% of them receive treatment, says the National Institute on Mental Health. Children are just about as likely as adults to have mental illness, but much less is known about childhood disorders and safe, effective treatments for them.

Problems with the care of mentally ill children went largely unnoticed by many Americans until this February, when the Food and Drug Administration held a hearing on antidepressant use in children. Dozens of parents at the meeting said the pills had provoked their kids to commit suicide.

In March, the agency asked drug companies to put warnings on the medications, which are taken by more than 1 million children and teenagers, that patients should be closely monitored for side effects. The FDA is expected to announce at a hearing in late summer whether it will further restrict antidepressants for kids.

Children's mental disorders are more likely to be recognized and diagnosed than they were a few decades ago, but evidence also suggests that more are suffering from mental health problems, says health policy researcher Ronald Kessler of Harvard Medical School.

Although the FDA controversy sparked awareness of the problem, it's just one visible sign of fundamental problems in kids' care.

Among stumbling blocks:

•Sparse research. For decades, many scientists didn't believe children had serious mental health problems. Researchers also considered it unethical to study how medications affected children, says Dianne Murphy, the FDA's pediatric drug chief. That view just started to shift in the mid-'90s. Still, most psychiatric drugs taken by children have not been proven safe and effective in them.

"The research agenda has been driven by the drug companies," whose main goal is selling medicine, says John March, director of child and adolescent psychiatry at Duke University. The bulk of research involves adults because the majority of people getting treated are adults. Although more research is underway on children's disorders and treatments, major gaps in knowledge remain.

•Failure to offer children proven treatments. There's evidence that medication and structured behavioral training sessions work best for the majority of school-age children with attention-deficit/hyperactivity disorder (ADHD), says child psychiatrist Peter Jensen, director of the Center for the Advancement of Children's Mental Health at Columbia University in New York. But few children get the optimal treatment, he says.

Cognitive behavior therapy, a structured and goal-oriented method of counseling, treats depression about as well as pills, March says. Again, it's seldom used. Among the main reasons: a shortage of trained therapists, and insurers that pay for other therapies that haven't been proven to work, March says.

•Insurance coverage limits. Budget cuts are hacking away at mental health services for poor children insured through public programs. About 12% of children, 8.5 million, have no insurance. And kids covered by parents' work policies face limits on care.

The struggle for care

Paul Raeburn of New York thought his 11-year-old son, Alex, would be well cared for a few years ago when the boy suddenly dived into a spiral of violent outbursts and suicidal acts.

Raeburn was then a BusinessWeek editor with employer-sponsored insurance. But he soon found himself writing checks for more than the monthly house mortgage to get Alex care. Hospitals repeatedly discharged the boy when he was still mentally ill. Numerous psychiatrists were baffled by his symptoms and prescribed drugs that didn't work.

In despair, Raeburn, a science journalist, used professional contacts to find a top-notch child psychiatrist who finally stabilized Alex. Raeburn's memoir, Acquainted With the Night, describes his struggle to get care for Alex and his daughter, Alicia, who developed major depression. "I just wonder what happens to people who don't have contacts," he says.

Gerard Werlein knows. He has spent about $125,000 in 2½ years and lived through five suicide attempts by his teenage son, Andy. Werlein, a sales representative for a suburban Milwaukee management consulting firm, has insurance that allows 12 therapy visits a year. "Andy needs one a week, sometimes two or three," he says.

"We liquidated all of our savings and investments, 401(k)s and life insurance," he says. "We told our older boy in college he's on his own — that was a tough one, as a father. We've refinanced our house twice for cash. We have very little left," Werlein says. "But you know what? Andy's still alive. A lot of kids with mental illness aren't."

Some parents have given up custody of their children because it was the only way to get them help. Parents in 19 states placed 12,700 children in state welfare or juvenile justice agencies in 2001 so they could get mental health care, the General Accounting Office reported last year.

Thomas O'Clair of Rotterdam, N.Y., felt he had no choice but to do that; it was the only way his 12-year-old son, Timothy, could receive residential care, O'Clair says. The boy was diagnosed with three disorders and had become violent. After several months in a state residential facility, he seemed to be stabilized and came home, but only for six weeks. Timothy hanged himself at home a couple of months before his 13th birthday.

O'Clair, a mechanic who is married to a nurse's aide, believes the boy's death three years ago was needless. "If his condition was covered like diabetes, we could have gotten him the care he needed all along," O'Clair says.

Some parents push for pills

Even when parents can pay for care, the severe shortage of child and adolescent psychiatrists can delay a diagnosis or proper treatment. A USA TODAY analysis shows shortages are most severe in the South and rural Northwest. Many pediatricians prescribe psychiatric drugs and, although surveys suggest most don't feel competent to do so, some say real-world conditions justify it.

Parents sometimes fear that their depressed kids are becoming suicidal and push for medication, says pediatrician Rachel Effros of Boise. "They only have a few therapy visits on their plan, or they're on Medicaid and it's hard to get them any counseling. But all these plans pay for pills. You know it's not optimal, but it can help the family get through a crisis, and they're not getting anything else."

Children may not be "getting anything else," but too many get antidepressants, says UCLA child psychiatrist James McGough, a member of the FDA pediatric drug advisory panel.

"They're overprescribed," McGough says. "It's the reflex — if someone's unhappy in school, put them on antidepressants." Most children get better without the medicine, he says.

Equal treatment for all illnesses

Despite the far-reaching problems in children's mental health care, some see positive signs for the future.

Advocacy groups are guardedly optimistic that Congress soon will pass a parity law requiring mental illness to be covered just as any other illness. If so, consumers should be prepared to pay more for policies, cautions Susan Pisano of America's Health Insurance Plans, the trade group representing insurers.

Also, research on childhood disorders is rapidly increasing, March says, and it's focusing more on the needs of kids rather than developing profitable drugs.

But he thinks big care improvements hinge on insurance plans reimbursing only for treatments proven to work. "You'd be surprised how quickly therapists would train up in something like cognitive behavior therapy if payment depended on it," he says.

The most seriously ill kids should be funneled into state-of-the-art "centers of excellence," just as they are for cancer care, says March, and participate in research to greatly advance knowledge. Such research spurred soaring cure rates for childhood cancer.

"This isn't rocket science, it can be done," he says. "All it takes is the political will."