Two years later, on March 18, 2003, his parents, Tom and Donna O'Clair, took part in a press conference in Albany to announce Timothy's Law Campaign (TLC), a campaign to finally end health insurance discrimination against persons with mental illness and chemical dependency in New York State.

On April 28, 2003, a bill for Timothy's Law, A. 8301, was formally introduced into the New York State Assembly with about 50 majority sponsors. Key sponsors are Assemblyman Paul Tonko, D-Amsterdam, and Peter Rivera, Chairman of the Assembly Mental Health Committee.

The bill was orginially submitted for introduction on April 2nd, but then was held up in both houses at the request of the Senate majority leadership, which wanted to review it before it was formally introduced.

The bill is still on hold in the Senate while it undergoes a review of its potential fiscal impacts by the Senate Finance Committee. According to the Albany Times Union, Senate Mental Health Committee Chairman Thomas Libous expects a report on the legislation within two weeks. The bill has garnered 32 majority sponsors in the Senate.

The bill was written with the input of a coalition of 25 organizations, including NAMI-NYS. It seeks equal benefits for mental health and chemical dependency services for health insurance polices written in New York State, contingent upon federal limitations.
Commenting on the legislation to NAMI-NYS, Senator Libous said, “No family should have to experience the pain and suffering of the O'Clairs. Working together, we can ensure the best possible mental health services and coverage for all New Yorkers so we can prevent tragedies like Timothy's before they happen."

Timothy was a typical boy. He climbed trees, brought home stray animals and played the piano. Problems began to develop in his life as he grew, however, beginning with attention issues. By age seven, he was becoming easily frustrated and developing a serious temper. By the time he was eight, his family and his school knew he needed help.

Over the years, Timothy was diagnosed with Depression, Attention Deficit Hyperactivity Disorder, and Oppositional Defiance Disorder.

At the press conference, with Donna at his side, Tom O'Clair described how their son was systematically denied access to the health care he needed. While the family's health insurance allowed only 20 outpatient visits a year for Timothy's psychiatrist and psychologist combined, Timothy needed weekly visits to his psychiatrist to monitor his medication and twice-a-week visits to his psychologist.

Even the visits the insurance covered took their toll. While the family's co-payments for both physical and mental health services were $10 per visit initially, mental health visits quickly jumped to $35 each.

Once the insurance was used up, Tom and Donna were left to fend for themselves, paying for care they could not afford.

Meanwhile, Timothy grew steadily worse. Two hospitalizations occurred, each limited to a week by the health insurer. For the latter hospitalization, the family paid out-of-pocket for three extra days, even though he had used only seven out of his annual 30-day allotment for inpatient services.

Because the insurance would not pay for desperately-needed residential care, Tom and Donna finally had to "share" custody of Timothy with the state, and pay child support.

When the O'Clairs were able to access care and services, they found the treatment they attained to be high quality. The problem was that it was limited and sporadic, available only as insurance and the family budget allowed.

For more than five years, the O'Clairs struggled to obtain the care their child desperately needed while trying to make ends meet. Even after Timothy's death, the family continued to pay child support to cover his stay at the residential program -- $226 out of every paycheck -- and they were still paying for the "extra" days of his last hospitalization. The family had to go to court to get the child support garnishment stopped.

"If Timothy had diabetes or cancer our health insurance would have provided unlimited coverage. Instead, simply by the nature of Timothy's illness, our coverage was limited," Tom O'Clair said. "We are confident that had Timothy received the services he needed, he would be with us now."

At the press conference, the O'Clairs were joined by representatives of the TLC coalition, which currently consists of 25 organizations, including advocacy organizations, service providers, unions, hospitals and professional organizations. These representatives made their comments in a press release:

"It is too late to save Timothy's life, but that doesn't mean other children and families in New York should be forced to suffer the same fate," Paige MacDonald of Families Together of New York State said.

Referring to a recent actuarial study that shows the cost of parity in mental health and chemical dependency benefits would be minimal, Joseph Glazer of the Mental Health Association in New York State said, "It would have cost $1.26 per month to save Timothy O'Clair. For pennies a day, our children and families could be getting the full complement of mental health and chemical dependency services."

"Not only would there be minimal premium costs, but studies have shown that equal mental health benefits raise productivity and lower overall health costs," J. David Seay, Executive Director of NAMI-NYS said. "With Timothy's Law, everybody wins." (See the fact sheet on pages 25 and 26 courtesy of NAMI New York City Metro's Parity Project)

The O'Clairs were also joined by Jessica Lynch, the reigning Miss New York City, who began to suffer from depression while in the third grade. She described how, at the age of 14, she was admitted to a psychiatric hospital weighing only 79 pounds, and how, after the number of days her insurance would pay for was up, the hospital found that she had been "magically cured," and released her, even though she still weighed 79 pounds. She said she was appalled that such practices were still happening.

Speaking at the Press Conference, Assemblyman Tonko he said he would do his utmost to pass Timothy's Law.

"I will implore my colleagues to open their doors so they can open their hearts," he said. "We need to change his devastating discrimination, and we're going to make this happen. We're going to bring about Timothy's Law, so we don't artificially restrict and deny the care that is needed."

NAMI-NYS urges all of its members to actively participate in the Timothy's Law Campaign, and challenges its affiliates to advocate for Timothy's Law with their legislators and Governor Pataki as they have never advocated before.

Show your appreciation for the legislators who support this law, and generate support for it in your community.

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