Friday, January 28, 2005


The Treatment Advocacy Center Newsletter 1/28/05


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January 28, 2005


1. KENDRA'S LAW-A JOURNEY - NAMI New York State News, December 2004



4. TESTIMONY OF JOY SCOBLE - New Jersey Governor's Task Force On Mental Health, January 19, 2005


1. NAMI NEW YORK STATE NEWS, December 2004

[Editor's Note: Our Center's first major reform campaign was in 1999 for Kendra's Law, New York's pointedly effective law for assisted outpatient treatment. While the effort to secure the measure was just gearing up, a man with untreated schizophrenia pushed Kendra Webdale off a Manhattan subway platform and in front of an oncoming subway train.

The reaction of the Webdale family to her death was as remarkable as it was admirable. Overcoming their indescribable grief and refusing to be obsessed with revenge, they passionately endeavored to prevent the untreated symptoms of treatable illnesses from leading to similar tragedies for other families. The members of the Webdale family became a swarm of fevered advocates for bringing assisted outpatient treatment to their state. At their head was Pat, Kendra's mother, whose continued zeal to help those most overcome by severe psychiatric disorders recently led to her joining the Board of Directors of NAMI-New York. Below are her comments on the law that bears her daughter's name from an article graciously supplied to the E-News by NAMI-NY.]


by Pat Webdale

Kendra's Law is intended to help keep those who need it on the road to recovery. Just as some people need glasses to maintain control of their vehicles, some need ongoing treatment in order for them to maintain control of their own lives. Kendra's Law, named for my daughter, provides for Assisted Outpatient Treatment (AOT) to help people who otherwise might not survive safely in their community.

I have myself traveled many miles both literally and figuratively since I appeared at a press conference in Buffalo with my husband Ralph and state Attorney General Eliot Spitzer. This November will mark five years since Kendra's Law has been an option for family and friends seeking help for their loved ones. This article is about the journey of Kendra's Law - so far.

The Beginning of the Road

When I heard that Kendra had been killed by a previously violent, noncompliant mentally ill man, I ran around my kitchen asking out loud why Andrew Goldstein wasn't taking his medicine. I vowed to make a difference. My family wrote several letters to Attorney General Eliot Spitzer's office to inquire about the discharge policies of mental health facilities. His response was to tell us about the proposed AOT law he was going to introduce to the state Legislature. He suggested the law be named in honor of Kendra.

Despite the honor, we didn't initially jump at the offer. After all, it wouldn't bring Kendra back to us. Our daughter, Suzanne, a mental health professional, worried that the proposed law wouldn't have any teeth. After much thought, however, we decided such a law would be worth it, if it stopped death and devastation for just one family. Kendra always made herself available to be a friend, to listen to woes, to offer unconditional love. She would expect no less than for us to support a law that could help others.

Going in the Right Direction

After I began advocating for Kendra's Law, my phone began to ring with calls from all around the country. Family members of persons with a serious mental illness began to call and write to me, desperately seeking help for their loved ones. I listened to countless stories, and I learned many things. I learned about others who had died at the hands of a person who had decompensated due to lack of treatment. There was 11-year-old Gregory in New Jersey, 19-year-old Laura in California, 24-year-old Kevin in Michigan. Just recently, a mother in Buffalo was stabbed to death by her son, who was trying to get rid of her "evil eye." She and her husband were Scientologists and were treating him with vitamins.

I heard of the many more who died by their own hands because mental illness had gained control. They included a young relative of mine diagnosed with bipolar disorder who completed suicide three weeks after Kendra's death.

I also learned how persons with mental illness have died at the hands of others - paying the ultimate price for its stigma. I learned of a young man who was having a cigarette behind his group home when he was set upon by a group of youths who dosed him with gasoline and set him on fire. I learned of a young man who died from stomach problems because his doctor thought his symptoms were "all in his head."

Of course, I heard many other stories of "lesser damage." A death is a grievous loss, but so is the loss of a person's future, career path, education, family and love life. I tried to hook people up with resources, and I must have handed out at least a dozen copies of Dr. Amador's book, I'm Not Sick and I Don't Need Help.

I came to the personal conclusion that, for those who need AOT, there were really not two sides to the issue of treatment. For them, it is not a choice between safety and the rights of the individual with mental illness, for mental illness has already gained the upper hand. One must not fall into the trap of advocating for the rights of the illness itself - an illness that can be fatal. We don't advocate for the rights of cancer or heart disease, do we? We must advocate for treatment that will enable individuals to get the control back from the illness. When we enhance the quality of life for even one person, we are enhancing ourselves as a whole. Kendra's Law had the power to change lives - to improve lives - to save lives.

A Bumpy Road

To say the road has not always been smooth would be an understatement. As we expected, there were critics. Those who vehemently opposed Kendra's law were mostly polite in my company, but the implication was clear: I didn't know what I was talking about. Many said the law would do nothing but infringe on the rights of persons with mental illness. What the law infringed on was the right to do nothing, even in the direst circumstances.

After five years, the track record for AOT, when it is properly implemented, has exceeded the expectations of its staunchest supporters. According to the Office of Mental Health's interim report on Kendra's Law, among those who have received AOT services, incidents of hospitalizations, homelessness, harmful behavior and arrests have decreased markedly. Suicide threats and attempts have significantly decreased as have physical harm to self, property damage, substance abuse, and threats of physical and verbal violence to others. Not only that, but the report also found that important changes to local mental health systems have come about as a result of AOT, including enhanced accountability, improved access to services, improved treatment plan development and discharge planning, improved coordination of service planning and improved collaboration between the mental health and court systems. Many of these were unexpected benefits.

One thing is certain: Where AOT has been successful, it is not the program, nor the funding, but the individuals who have embraced AOT and the persons who have done well in treatment that deserve our applause. At the top of my list for special acknowledgement would be the Woodhull Medical and Mental Health Care Center of Brooklyn/Staten Island AOT program. The staff at Woodhull will tell you that it was initially wary of AOT. On day one they had a staff of one and hoped that the phone would not ring. But it did and they progressed from there.

It is the positive attitude of the individuals supporting Kendra's Law, such as Mary Barber, MD, Associate Medical Director of Ulster County Mental Health Department, who make the program successful. These are the people who comply with the law, who take risks despite reservations, who are true professionals and, most of all, who care deeply about their patients.

On the other hand, Kendra's Law does not work if county officials fail to use it, or if they only go through the motions. Going on five years, two counties in New York State have yet to conduct a single AOT investigation, while several counties have only conducted one investigation. In Chautauqua County, a family tried for more many months to get AOT for a man who ultimately set his house on fire and held off the firemen with a shotgun. In Otsego County, a man almost died because his AOT caseworker failed to notify a treatment facility that he was allergic to a medication, even though that fact was written into his court-ordered treatment plan.

It is my understanding that a law is more than just a set of recommendations. Counties and providers must be held accountable in their application of the law, not only in regard to whether they provide services, but in the quality of services they provide. Ensuring a proactive application of the law throughout the state is vital to the lives that are at stake.

The Road Ahead

Where do we go from here?

Improve education: I have heard stories of intensive case managers who don't show up to assist a patient and paperwork that is not completed - small things perhaps to a tired and frustrated worker during a long day, but critical for successful care. These small cracks become a fissure and ultimately a gaping hole. Education should be provided to every person involved with mental health - from the families, police agencies, and ER physicians to mental health providers, case managers. Judges are in a special category of need. I have heard complaints that going to a court for an AOT order is "stigmatizing." Yet the court is there to safeguard the rights of the individual, to decide in an independent manner on a case-by-case basis whether the person qualifies for AOT. The process cannot work, however, if judges do not understand the law, its purpose or how it is supposed to work. Or if they simply don't understand what mental illness is, in the first place.

Advertise: Create an effective advertising campaign. Kendra's Law should be served up on a silver platter to those in need. Tell people what Kendra's Law is and how to access it.

Coordinate services: Those who have successfully navigated the system need to network with those who struggle with it. We need more across-the-board consistencies from the counties. I am amazed at how many resources there are out there, yet dismayed that so many entities continue to work on their own.

National reforms are coming slowly. Many states fight for AOT, but their state NAMIs may or may not support it. We must pull together and make changes that will revolutionize the care of those with mental illnesses and will stand the test of time.

If a family member cannot access Kendra's Law through the mental health system they have the right to file a petition privately. However that is a cumbersome and expensive process. Pro-bono psychiatric and legal services are needed to be made available to such families. Also, the law should be clarified to make this option more viable.

Get support from our legislators: Kendra's Law was enacted with a sunset clause for the law to expire after five years and for a study to be made of its effectiveness. The law expires next June. A new, permanent, Kendra's Law should be proposed early next year [in 2005]. We need to be vocal and gain the support of our legislators for this new law. Those who are in the know because they have a personal situation can be helpful to the cause.

Define the problems and correct them: The Office of Mental Health is conducting the study that was called for by the Kendra's Law legislation. NAMI-NYS also is conducting research. With greater research, I am confident we will find even more ways to increase its effectiveness.

Kendra's sister Suzanne would like to see us prepare a clean-up bill for Kendra's Law. She has proposed a questionnaire to be sent to providers to identify problems. Suzanne points out that different counties have different terms to define similar things such as dangerousness, diversion, enhanced services, and care coordination. They must be on the same page in order to be consistently effective.

The sunset date for Kendra's Law is June 30, 2005, Suzanne's birthday. What a great present it would be to have Kendra's Law renewed and strengthened!


2. NATIONAL PUBLIC RADIO, January 25, 2005

[Editor's Note: This week Kendra's Law was examined in a segment of Morning Edition, National Public Radio's most popular program. Thirteen million listeners across the nation learned how assisted outpatient treatment can bring needed care to lives turned to havoc by serious mental illnesses. Among those interviewed is Mary Zdanowicz, our Executive Director.

The transcript of the piece is below; the audio stream is available at: ]



Anchor: Renee Montagne
Reporter: Matt Hackworth


In New York, lawmakers are considering whether to extend Kendra's Law. That law requires mentally ill people to receive outpatient treatment. New York state considers Kendra's Law a success, but some patient advocates argue that court-ordered treatment is the equivalent of a jail sentence. Matt Hackworth reports.


Sitting at her wooden kitchen table in her Rochester home, Ann opens a light blue notebook filled with painful reminders of her son's bout with schizo-effective disorder, a mixture of depression and mania.

ANN: This is kind of like a chronological of it, the hospitalizations and all.

HACKWORTH: Ann, who asked her last name not be used, says her son showed signs of illness after graduating high school. He talked frantically and grew more and more removed from the family. Ann says her son was delusional, paranoid, and when she feared violence, she called the police.

ANN: My daughter and I just went into hiding because we were scared to death that he was going to find out that we called the police and that he was going to come after us. That's how significant that bizarre behavior got. We didn't even know who he was anymore.

HACKWORTH: Sometimes police took Ann's son to the hospital. He was hospitalized a dozen times in 10 years, ending up back on the streets with no supervision or follow-up care. Finally, Ann forced her son to stay in treatment using Kendra's Law. Named for a victim pushed in front of a subway train by a mentally ill man, Kendra's Law provides Ann's son with home visits from mental health workers. They make sure he's taking medication and living as best he can. Mary Zdanowicz of the Treatment Advocacy Center says Kendra's Law and other like it are filling a void.

Ms. MARY ZDANOWICZ (Treatment Advocacy Center): This is not just a way to commit a patient to treatment. It also commits the treatment system to the patient. When we closed the state's psychiatric hospital doors and sent so many people into the community, they were really abandoned.

HACKWORTH: Even with Kendra's Law, there are patients in New York state who aren't getting treatment. Some cash-strapped counties set aside little funding for Kendra's Law. It's used more in New York City than upstate and other urban areas still rely on mental health systems and programs that predate Kendra's Law. Many families coping with a mentally ill relative don't know Kendra's Law can help them, and Zdanowicz says patients who may benefit from the outpatient treatment she supports are usually skeptical of treatment anyway.

Ms. ZDANOWICZ: Most of the people in these programs are people with schizophrenia and some with bipolar disorder, and the thing that's common to those two illnesses is that there is a certain portion of those people who just don't realize that they're ill, and so because they don't think they're ill, they don't want to be treated.

HACKWORTH: In about a third of Kendra's Law cases, patients who refuse treatment at home are forced by the court into a hospital for observation. Advocates say without treatment, those who refuse help are at greater risk for violent altercations and homelessness. But some challengers to Kendra's Law see refusing treatment as a patient's individual right. George Ebert works for the Mental Patients Liberation Alliance, one of about 100 grassroots groups fighting outpatient treatment laws across the country. Ebert says even with a mandatory court hearing where patients and their attorneys can fight placement in such programs, outpatient treatment laws still violate civil rights.

Mr. GEORGE EBERT (Mental Patients Liberation Alliance): Would we be considering people that haven't broken a law, haven't been charged with a crime, yet are being made to do something that someone else doesn't have to do, it's civil liberties?

HACKWORTH: Kendra's Law has already survived a court challenge that argued it violates civil rights. The New York law is up for renewal in the spring and Ebert says his group will protest keeping it in place. A state study found largely positive results for Kendra's Law which is one reason lawmakers are expected to extend it. Family members like Ann whose son receives treatment under Kendra's Law say they're hoping it's extended. Ann says her son has been out of the hospital for more than a year and visits from mental health workers are the only way he'll take his medication.

For NPR News, I'm Matt Hackworth.

MONTAGNE: This is NPR News.


3. PSYCHIATRIC NEWS (Vol. 40 No. 2), January 21, 2005

[Editor's Note: Among the progeny of Kendra's Law is Kevin's Law, an analogous Michigan measure that was also forged by a tragedy. Kevin's Law was passed, became law, and took effect all in the waning weeks of 2004. Psychiatric News, an official publication of the American Psychiatric Association, reports on the new law and uses it as a springboard for a wider examination of assisted outpatient treatment.

Note: Forty-two states, not 24 as in this article, have some form of assisted outpatient treatment.]


By David Milne

Michigan joins the ranks of states mandating outpatient psychiatric treatment as an alternative to incarceration and homelessness for some mentally ill individuals.

Michigan has joined 24 other states in giving courts, police officers, psychiatrists, mental health professionals, and families with a means of forcing people with mental illness into treatment rather than jail.

Wayne Creelman, M.D: "The outpatient commitment especially helpful in the care of patients when substance abuse is a complication to underlying psychiatric pathology."

The law, signed by Gov. Jennifer Granholm (D) late last month, goes into effect immediately.

Named for a college student in Kalamazoo killed by a person who had been in and out of mental health care, Kevin's Law allows judges to order treatment for people who are not following a regimen recommended by a psychiatrist or mental health professional.

People may be subject to such court orders only if they have been hospitalized or imprisoned in the previous three years or acted violently toward themselves or others in the previous four years.

Since the nationwide closing of psychiatric hospitals beginning in the 1970s, states have had little power to mandate mental health care, unless someone is dangerous or convicted of a crime. Family members and advocates for mentally ill individuals in Michigan have pushed for Kevin's Law since 2001. Public awareness that the state's mental health care system is broken helped create a consensus for the bill this year.

State Sen. Tom George (R), who introduced the bill, said that it will improve public safety, especially in urban areas, where patient treatment is concentrated, and provide the treatment that people with mental illness often have trouble getting.

A similar law in New York State, Kendra's Law, resulted in a 83 percent reduction in arrests, an 86 percent reduction in homelessness, and a 67 percent reduction in poor medication compliance among people ordered to receive treatment, according to the New York State Office of Mental Health. George is the only physician in the Michigan Senate and has a brother who suffers from mental illness.

The constitutionality of similar laws in other states has been challenged, so far without success.

"I think a good job was done by advocates in working with the sponsors on rights protection issues under these new bills," Mark Reinstein, Ph.D., president and CEO of the Mental Health Association in Michigan, told Psychiatric News.

"The potential downside is that this area can't be perfectly legislated. We could spend the rest of our lives always coming up with one more `what if' that hadn't previously been covered. So the question becomes: How well will our first crack at this work?"

While many in the mental health community believe the legislation is needed, they also recognize that some fine-tuning may be in order in the next couple of years.

Reinstein claimed that Michigan simply has way too many problems with incarceration and homelessness of untreated mentally ill populations to sit back and not take this step.

"I realize that some persons with mental illness are against mandated treatment," the director of Michigan's Alliance for the Mentally Ill, Hugh Huebl, M.D., told Psychiatric News. "But when you consider that Kevin's Law pertains to persons who already have become a part of the criminal justice system because of their illness, it is hard for me to see any downside to mandated treatment under those circumstances."

Huebl thinks more attention should be directed to families struggling to cope with members who are psychotic, delusional, and sometimes paranoid and whose behavior is grossly detrimental, inappropriate, abusive, and socially unacceptable. He said these individuals often do not realize they are ill.

"I have recently dealt with several such cases, and if they do get a court order and their loved one is picked up by the police, most of time it is fruitless because the criteria of imminent danger to self or others is too stringent, and either the person is not admitted to a facility, or they are kept for too short a period of time, or the judge turns the person loose and they are back where they started from," he explained.

Huebl said that mothers are often left holding the bag, because of estrangement of siblings, husbands, or ex-husbands. Some community mental health agencies are opposed to providing more appropriate care, because it will cost more money, which only complicates the problem.

"I think the present way of dealing with these situations is unconscionable and inexcusable. I am all for rescuing and mandating care in these circumstances. If it were me, and the person refused medications, I would confine them indefinitely until they finally would come to realize that they needed help."

In one judge's opinion, Kevin's Law needs to be fine-tuned to make it more practicable. "Some requirements, such as the need for two additional witnesses, could make it difficult to implement," Milton Mack, chief judge of the Wayne County Probate Court, told Psychiatric News.

The law requires a lay witness to testify to the facts of the case and an expert witness to determine whether the person is mentally ill and, if so, whether the person meets the criteria for involuntary inpatient treatment. In addition, testimony is needed from an expert witness aware of certain prior acts by the person. The treating physician would know that but never appears in court, according to Mack.

"Getting an expert witness to testify about the person's history sounds simple, but you need to get someone on the stand who has intimate knowledge of the person to do that," he said.

He believes the law would work better in some rural counties where witnesses can be easier to find. But in high-population counties it might run into difficulties.

"Sometimes I think I need to be Dr. Mack as well as Judge Mack because the statute appears to give me the authority to decide what kinds of medications should be administered. And at the hearing I can enter a judgment regarding case management."

Under the law a judge can decide whether blood and urine tests should be used to check compliance with the effectiveness of medications, whether the person gets individual or group therapy and attends a day or partial day program, whether the person gets educational or vocational training, and whether there should be supervised or unsupervised living arrangements.

"A doctor doesn't have to make these decisions. I do. And I'm not a doctor."

Mack agreed with the Mental Health Commission's recommendation that if someone has a mental illness, the judge should get an order for treatment for 180 days. If the person gets better in the interim, he or she can have another court appointment and have the order rescinded. After that the community mental health agency would manage the patient.

"Being able to order outpatient treatment under Kevin's Law is a good idea because we live in an outpatient world. But unfortunately the Mental Health Code is an inpatient model," said Mack

Mack doesn't feel comfortable being so closely involved with what medications a person with mental illness should have.

"It's not my role or expertise. I don't think the patient will be well served by me making that decision."

The president of the Michigan Psychiatric Society, Wayne Creelman, M.D., told Psychiatric News that the district branch "has been very supportive of Kevin's Law all along."

"As always with legislation, the devil is in the details of its implementation," Creelman said. "The outpatient commitment law, however, is especially helpful in the care of patients when substance abuse is a complication to underlying psychiatric pathology in that [the law] allows caregivers to assist their patient population in the least-restrictive environment possible."


4. TESTIMONY OF JOY SCOBLE, January 19, 2005

[Editor's Note: After looking at one law that has been facilitating treatment for five years and another that has just begun doing so, we now turn to the effort to bring assisted outpatient treatment to New Jersey. Last week we shared the brave testimony of Cathy and Mark Katsnelson before the New Jersey Governor's Task Force on Mental Health. Below is that of Joy Scoble. Her brother's plight is also dire and indicative of laws that irrationally withhold treatment from those whose will has succumbed to psychiatric illnesses.]


Mr. Chairman and Members of the Task Force,

My brother has recently been released from Northern State Prison. He completed his 4 year sentence and was maxed out. Since his release, he's moved from location to location because he has had fits of rage and the family member or friend, who has been so gracious as to support him, no longer feels comfortable having him live with them. Today, my brother is living on the streets. Today, in these freezing temperatures, my brother does not have a place to call home. My mother cries constantly on sleepless nights because she is unable to allow my brother to visit her at home.

About 4 or 5 years ago, my brother attempted to attack my father in the middle of the night with a broomstick. During this battle, my brother claimed that he was going to kill my father and when that was done, he was going to go back into the house and kill everyone else. This, coming from a brother with whom my sister and I have been so close to in our childhood years, was shocking to hear. The reason why I do not hold this against my brother is because I know it was something that was triggered by his mental illness. When he has a fit of rage, as he does randomly, there is no catalyst that sets it off.

For about 5 or 6 years now, my family has desperately attempted to get him help for his mental illness. My mom has pleaded to a judge at one point, to try and have him committed. This was unsuccessful because he's an "adult" who cannot be forced into help. For years, he's been thrown out of Salvation Army and YMCA housing because he's been in fights with other residents. During his 4 years at Northern State Prison, he's been in multiple fights and has been placed into solitary confinement more times that I can count. At one point, his doctor had put him on Risperdal and when family had visited him, there was a significant change in his attitude. He had seemed completely "normal." Only a few visits after that, he converted back to his depressive state. After questioning him about the medication, he explained that he didn't think it was working, so he decided to stop taking it. After that visit, he had gotten into another fight.

While my brother was finishing up his sentence, I had received a letter in the mail. It was from a gentleman who had shared a jail cell with him in the past. This man had been released from jail and he wrote to me because he was concerned for my brother. He noticed that my brother had reverted back to his depressive and destructive state and was wondering if he had stopped taking the medication.

Today, everyone who's met him is convinced that he needs extreme help for his mental illness. When he gets into a fit of rage, he does not make sense and he appears to be dangerous. I've recently contacted my local city police station to inform them that my brother is living on the streets and that if he were to get into any trouble, I would prefer it if he was taken to a local hospital for evaluation on his mental illness. When I spoke to the Lieutenant, he informed me that he remembered my brother from previous incidents. When I explained that he's having fits of rage, this officer assured me that if they found him, they'd take him into a hospital. The next day, my mother called the police on my brother because he was trying to get into her house. The police officers showed up, and said they couldn't take him anywhere against his will.

This is why I've felt so helpless. Numerous times, I've contacted hundreds of people in law enforcement and mental health offices, but have been unsuccessful in receiving advice. As I've been told, I cannot get help for my brother until he attempts suicide. Which, in my opinion, is sad. It's sad that society will not help others until extreme measures are taken.

I wholeheartedly support assisted outpatient treatment and hope that New Jersey will take the step that so many other states have taken in improving mental health issues before anything extreme happens. Before lives are taken from innocent people who are either victims or are those who cannot ask for help themselves. I implore you to consider giving individuals another chance at life.


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