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

Friday Fax from Albany

Pogo Was Right: “We have met the enemy, and he is us,” proclaimed Walt Kelly’s comic strip character Pogo more than 30 years ago. Here in New York’s own Okefenokee Swamp, known as Albany, MHANYS’ advocacy for passage of Timothy’s Law evokes many of the same emotions as Pogo’s efforts to save his beloved swamp.

Pogo often lamented his community’s contribution to its own frustration – its seeming inability to put aside self-interest, shimmering distractions, power struggles and the allure of power to pursue the greater good. How often have we, in the mental health advocacy community, similarly succumbed?

Pure of message and singular of purpose, Pogo (like us) found himself perplexed by those in his community who could not unite – be it ending the war in Vietnam or cleaning up the environment. Timothy’s Law advocacy holds those same perplexing tribulations – no clear message, no consistent push, and too many eyes veering from the prize. In politics, a mixed message is no message at all.

On Timothy’s Law, our failure has led us to identify with yet another Walt Kelly decree. “We are confronted with insurmountable opportunities,” said Pogo.

Albeit the closest we have ever come to securing passage of parity, the end of the 2004 legislative session was truly dismal. We sat in the Senate Gallery, a handful of us, the O’Clairs and Assembly sponsor Paul Tonko, listening to the Senate sponsors of Timothy’s Law blast the bill that their names – printed one paragraph above Timothy’s – graced. Senator Libous called the PricewaterhouseCoopers study “made up to suit the client”, and defended the Senate’s actions to defeat his bill, looking to the gallery, toward the O’Clairs, and insisting, “This is not a game.”

As we walked away, defeated and discouraged, it became evident that the doomed path of Timothy’s Law was due to the lack of a cohesive message of words, direction, strategy and deeds. The Assembly had passed Timothy’s Law twice, but the emanating message from many groups wasn’t a call for the Senate to do the same. It was an amalgam of beckoning to legislative leaders to “DO SOMETHING” – which for the Assembly could only mean negotiating away from our bill.

Throughout the campaign, many advocates continually strayed from the message of Timothy’s Law, with a number of highly visible Timothy’s Law supporters standing before the news media, joining Senators as they introduced the weakest bill in the nation – “not worthy of Timothy’s name”, said Tom O’Clair. And that was the bill the Senate ultimately passed. Further, throughout the entire effort, organizations whose governmental fate lies with the Senate steadfastly resisted efforts to hold that house accountable. The alternative to accountability has always been the status quo.

Even today, many supporters of Timothy’s Law insist that we need to treat both the Senate and Assembly equally in our advocacy. Those who make that argument miss the point. For the Assembly to keep working on this bill is to negotiate against ourselves. Do we really want the Assembly to work toward a lesser bill? Or do we want the Senate Republicans to pass our bill?

Most mental health advocates operate within the confines of our own corner of the swamp. Lost on many is the formula for success, used by other communities to get the laws they seek and need. That formula is the 27 years of single-mindedness required to pass the Sexual Orientation Non-Discrimination Act (SONDA) in the Senate in 2002, the decade of Senate-focused advocacy required to pass the “Hate Crimes” bill in 2000, and how passage of the Women’s Health and Wellness Law was secured two years ago.

We need look no further than the current campaign to increase the minimum wage from $5.15 to $7.10 an hour in New York. The Assembly passed the bill long ago, and all focus is now on the Senate. Does anyone see those advocates pushing the Assembly to do something? No. Because doing that “something” would be a $6.10 minimum wage - or possibly no change at all.

MHANYS advocacy approach has consistently been “on message”, and at times aggressive. This brings to mind another Pogo quote, “But how 'bout if the one guy is right an' the 10,000 is wrong?” Driven by more than 20 years of experience in government and advocacy, our efforts are based in painfully simple reality. History shows that the above laws were completed when the Assembly passed the bill people needed, and the Senate was, through single-minded advocacy and public pressure, forced to pass the Assembly bill. For Timothy’s Law to pass, efforts addressing the Assembly, except to say thank you and encourage them to stand resolute, must stop.

Do we realize how close we actually came? The phrase “Timothy’s Law” is part of the public lexicon, due to hundreds of media hits and the unflagging effort of the O’Clair family. At the same time, the corporate opposition to Timothy’s Law was confronted and defeated. The report, “Who Wants to be a Millionaire,” took the wind from the health insurance industry’s sails for an entire session, rendering them unable to talk about costs without some intrepid reporter bringing up salaries and profits. With the small business community the last remaining obstacle, amelioration was found in the Assembly’s proposal to incorporate a tax credit into Timothy’s Law.

Absent unity and focus on the Senate, passage of Timothy’s Law remains elusive, and will continue as such, unless others steel their collective spines and push forward. Short of that, Timothy’s Law remains an insurmountable opportunity. All the pieces are in place – the bill has passed the Assembly, the health insurers are silenced, the small businesses are countered, and the whole world is watching. The only enemy yet to be conquered is ourselves.

NYS Senate To Return to Albany July 20th: Pushing it off one day from the original July 19th date, members of the Senate are due back in Albany on Tuesday, July 20th. While the Assembly has not indicated whether it will return next week, some reports have suggested they will, as well.

Though their agenda is not yet set, newspaper articles from around the state suggest that the Senate will take up legislation to raise the minimum wage and fix the death penalty law recently found unconstitutional by the NYS Court of Appeals. But, it appears that Timothy’s Law will remain among the many issues, including the Budget, left unresolved. Nonetheless, we remain hopeful that progress toward some agreement on Timothy’s Law will occur.

Please help the O’Clairs in urging the Senate to pass Timothy’s Law. Please call your Senator to urge them to pass Timothy’s Law when they return to Albany on July 19th.

Let Senators know that the bill they passed in June, S.7296-A is “a far cry from Timothy’s Law,” and urge them to pass S.5329 – Timothy’s Law.

In the News:

'Outrage' is a good word. By Tom O'Clair
The Journal News Op-Ed, July 9, 2004

(The writer lives in Schenectady.)

As New York state legislators recently adjourned and drove home from Albany, my family and I began to relive the grief we experienced from the suicide of my youngest son, Timothy, three years ago. Our emotional wounds had been ripped open again when the Senate voted down the bill named in memory of Timothy. It was as if we had lost him all over again.

For nearly two years, we have campaigned for passage of Timothy's Law, aimed at ending the discriminatory insurance limitations that those adults and children living with mental health and chemical dependency needs face. In March 2001, after years of struggling against these limits, Timothy hanged himself in his bedroom closet at the age of 12. We firmly believe that had these limits on coverage not prevented us from getting Timothy the treatment he needed, he would be here with us today.

During the two years that we have been fighting for this law, my family and I have asked for nothing more than a leveling of the playing field. We simply want the discrimination faced by those living with mental health and chemical dependency to stop. We want insurance coverage to be equal to that provided for physical ailments like diabetes and cancer — this is known as "parity.'' The reality is, if Timothy had suffered from cancer instead of depression, there would have been no question as to whether or not he should receive all of the treatment he needed.

As the legislative session drew to a close, negotiations between the Assembly and Senate looked promising. After several rounds of discussions, the Assembly introduced a new version of Timothy's Law in an attempt to address the Senate's primary concern. The new bill provided a tax credit to small businesses to offset the possible increase in premiums that they may experience as a result of Timothy's Law.

At one point, Senate Majority Leader Joe Bruno stopped me in the halls of the Capitol to tell me, "We're going to do it.'' Pointing to my Timothy's Law pin, he again said, "We're going to do Timothy's Law!''

However, as the remaining days turned into remaining hours, negotiations fell apart. We were eventually left empty-handed.

The Assembly had already passed Timothy's Law in March. My wife, Donna, and I watched late that Tuesday night as the Senate voted down Timothy's Law — a bill that 34 of the 37 Republican majority senators co-sponsor — and instead passed a bill that Donna and I believe is not worthy of Timothy's name. Upon its introduction a month earlier, we called the Senate's bill "a far cry from Timothy's Law'' because it excluded employees who work for small businesses from receiving mental-health parity coverage and only covered a handful of diseases. In fact, Timothy would not have been covered under the Senate's bill until just before his suicide.

After the Senate adjourned, many people asked me how I felt, to which I could only reply, " 'Outrage' is a good word.''

The Legislature has left Albany, negotiations have ceased and the future of Timothy's Law remains uncertain. To right the wrong that millions of New Yorkers have been subjected to, due to discriminatory insurance coverage for mental health and chemical dependency needs, the Legislature must continue negotiations and pass meaningful parity legislation when it returns to Albany.

Timothy's name is not worthy of less.

Timothy's Law Unfinished. By Karen DeWitt
New York Public Radio, July 14, 2004

Mental Health advocates are hoping that when the State Senate returns to Albany next week, members will agree to a mental health parity bill that treats mental illness the same as physical illness.

Paige McDonald, heads the Timothy's Law Campaign, the group that is fighting for a mental health insurance parity bill. She says for many people, summer is a time of relaxation and relief from daily pressures. In the state legislature, Senators and Assemblymembers have been on a break since June 23rd. But McDonald says for people with mental illness and their family members, July is a time of high stress. That's because under current health insurance laws, coverage for mental health care is running out. She says most private coverage allows just 20 outpatient visits per year.

"The 20th week of this year came on June 17th ," she said. "For the past couple of weeks, while the Senate and Assembly went home without having passed Timothy's Law, our families are paying out of pocket in order to continue the care that their loved ones need."

Ann Berardinelli is raising her 8-year-old grandson, Austin. He has bi-polar illness and obsessive-compulsive disorder. She says he loves seeing his therapist every week, and the treatment is helping. But now, Austin's benefits for the year have run out. The therapist costs $70 a week. Austin also sees a psychiatrist twice a month at a cost of $250.

Berardinelli says she'll have to cut back on the therapy visits, but will pay the therapist with her own money so that her grandson does not have to stop treatment altogether.

Diane O'Connor has nine children that she has adopted after taking in foster care children for many years. Her 15-year-old daughter, who had fetal alcohol syndrome, is currently in a psychiatric hospital in Saratoga, undergoing treatment for bi-polar disorder. O'Connor says it's the third time her daughter has been in the hospital in two months, and her benefits are about to run out.

"It's unfair," she said. "I shouldn't be here begging, I should be with my daughter, visiting her, not begging for my insurance to continue services for her."

O'Connor, who also works at a center for troubled children, says she tells prospective parents who are willing to adopt a child with mental illness, to keep the child on Medicaid, so that they can receive proper care. She says she's considered giving her daughter back to the state so that she can get Medicaid coverage, which provides full mental health benefits. But she's reluctant to take that step.

"It's really hard for me," she said. "How do I explain that to her?"

Timothy's Law is named after 12-year-old Timothy O'Clair, a mentally ill boy who committed suicide. His father, Tom O'Clair, has been a tireless fighter to get the legislation approved. Paige McDonald says Tom O'Clair cannot be around this month to lobby the legislature, because his benefits have been exhausted. She says he's already taken all of his vacation and sick time for the year to advocate for a mental health parity law, and cannot take any more time off from work.

The State Senate is due back on July 20th, and Majority Leader Joe Bruno has said that reaching agreement with the Assembly on Timothy's Law is a top priority. The Assembly has already passed the mental health parity measure.

In June, the Senate approved an alternative plan that would exempt small businesses from having to provide full mental health coverage. The sponsors said full mental health coverage would drive up insurance premiums and lead to even more uninsured New Yorkers. Advocates say they don't believe that argument, and find the alternative bill unacceptable.

Mental Health Parity Law Sought. By Shirin Parsavand
Schenectady Daily Gazette, July 15, 2004

Dianne O’Connor of Schenectady is struggling over what to do when her 15-year-old daughter is released from the hospital soon. Her insurance plan will not keep paying for repeated stays for the girl, who has bipolar disorder.

"It’s unfair for parents to have to beg for services," O’Connor said at a news conference Wednesday. "I should be with my daughter visiting her, not begging for insurance to continue services for her."

O’Connor was among those calling on the Legislature to come to agreement on a bill requiring insurers to cover mental illness at the same level as physical ailments.

As the issue languishes at the Capitol, many families are now coming up against limits on the number of mental health visits covered by insurance, said Paige Macdonald of Families Together in New York State.

Most health plans cover just 20 outpatient visits and 30 days in the hospital for mental health treatments. That means patients who go to a therapist every week would run out of insurance by the middle of June, and must pay out of pocket or go without care, Macdonald said.

Advocates pressed hard during the last legislative session for the passage of Timothy’s Law, named after a Rotterdam boy who killed himself at the age of 12 after going through severe bouts of depression and anger.

Business and insurance groups that opposed the plan said it would drive up the cost of health insurance, leading to higher numbers of people without insurance at all. Supporters of the legislation said the cost increase would be minimal.

The latest version of the bill passed by the Democrat-controlled Assembly included a 3 percent tax credit for small businesses.

Senate Majority Leader Joseph Bruno, R-Brunswick, said that did not go far enough to ease businesses’ cost. At the end of the regular session last month, the Senate passed a mental health parity bill that exempts businesses with 50 or fewer employees.

Advocates said they would not accept that legislation, but Macdonald said there is still room for compromise between the Assembly and Senate.

Meanwhile, O’Connor said she must find a way to get treatment for her daughter, one of several children she adopted out of the foster care system.

She is now the mother of nine children and an advocate for adoptive parents at Parsons Child and Family Center.

O’Connor said she knows parents who have relinquished children to the foster care system so they can get treatment through Medicaid, an avenue she doesn’t want to take herself.

The Senate is coming back to session next week. The Assembly has not announced when it will return to session, but both houses must act before Aug. 2 on a state budget or temporary extension of the current budget.

A spokesman for Bruno said there have been talks between the Assembly and Senate on Timothy’s Law since the end of the regular session. But an aide to the Assembly sponsor of the legislation, Assemblyman Paul Tonko, D-Amsterdam, said she was not aware of any negotiations on the issue since the session ended.

Misplaced kids. Editorial
Rochester Democrat and Chronicle, July 9, 2004

It's a tragedy that prisons and jails in the United States are warehouses for the mentally ill. Currently, Rikers Island Prison in New York and the Los Angeles County Jail are providing mental health care to more people than any other facilities in the country.

Now congressional investigators have reported that thousands of children with psychiatric disorders are suffering the same kind of fate.

Mental health advocates and juvenile justice officials are right to demand that mental health care be available to more of those in need.

According to a congressional survey, 15,000 mentally ill children nationwide were incarcerated last year when mental health care was unavailable. Some had committed crimes attributable to their mental illness. Others, who had no charges against them, were simply held in detention because they had no place to go while waiting for treatment. At least four juvenile detention centers in New York reported inappropriate incarceration of youths who really needed medication or psychotherapy.

Leaving the criminal justice system to deal with mental illnesses is neither humane nor effective. And it costs more to incarcerate a person who suffers with mental illness than to provide preventive mental health care that would allow him or her to live as a healthy, productive and stable member of society. Congress and the state Legislature should keep that in mind when allocating funds for mental health.

It can also help by enacting legislation to require more equitable insurance coverage for mental illnesses. The state Senate and the Assembly have both passed bills toward that goal. A compromise should be found quickly.

In children and adults, mental illness should be treated, not punished.