KENDRA'S LAW A HUGE SUCCESS: MORE PROOF THAT AOT WORKS
New York's State Office of Mental Health released a new report on the status of assisted outpatient treatment under Kendra's Law, which became effective November 1999. The results are a powerful reaffirmation of the efficiency of assisted outpatient treatment.
In the first three years of the state's Kendra's Law program, 2,433 people received assisted outpatient treatment orders. The participants reaped tremendous benefits:
* 77% reduction in psychiatric hospitalization
* 86% reduction in homelessness
* 83% reduction in arrests
* 86% reduction in incarceration
* 67% reduction in poor medication compliance
* significant reductions in harmful behaviors, such as harm to self (45% reduction) and harm to others (44% reduction)
There were dire predictions that 10,000 people a year would be swept into Kendra's Law, but less than 1,000 individuals are enrolled each year. Not only did it help the individuals in the program, but the report notes that "there was broad recognition that implementation of the processes to provide AOT to high risk/high need recipients has resulted in beneficial structural changes to local mental health delivery systems. ... AOT has increased accountability at all levels regarding delivery of services to individuals who have high needs and who are at high risk to themselves or others."
The full report is available online at:
www.omh.state.ny.us/omhweb/Kendra_web/interimreport
About Kendra's Law. Kendra's Law (New York Mental Hygiene Law � 9.60) allows courts to order certain individuals with severe mental illnesses to comply with treatment while living in the community. The law is named in memory of Kendra Webdale, who was killed in January 1999 after being pushed into the path of a New York City subway train by Andrew Goldstein, a man with severe mental illness who had a history of noncompliance with treatment. Mr. Goldstein is now incarcerated.
WHY TAC EXISTS: TO SAVE LIVES
by E. Fuller Torrey, M.D.
On February 10, 2003, the Washington Post carried a story about Joseph Hilliard, a 60-year-old man in Washington, D.C., who was charged with brutally murdering another resident of his boardinghouse. Hilliard, diagnosed with paranoid schizophrenia and not on medication, had 30 years earlier murdered another man. During the intervening years, he had been inadequately treated and not maintained on the medication needed to control his symptoms.
This is not a unique or isolated case. I remember in the late 1980s seeing a very psychotic woman in my clinic at a homeless shelter in Washington. Twelve years earlier, equally psychotic, she had murdered her daughter. In the intervening years, she had been hospitalized, done very well on medication, and eventually been released with no requirement to continue taking her medication.
The public would be astounded if they realized how frequently this occurs. Because of the push by well-meaning but misguided civil libertarians and antipsychiatry groups, keeping individuals with schizophrenia on medication once they leave the hospital has become exceedingly difficult. And this is true even for individuals like Mr. Hilliard, who has proven himself to be dangerous. Many people with schizophrenia, like Mr. Hilliard, will not take medication involuntarily because they do not believe they are sick. They lack awareness of their illness because of brain damage caused by their schizophrenia.
We founded TAC because there was no public voice to reply to the civil libertarians and antipsychiatry groups. TAC exists to bring reason and scientific understanding to the medication debate. TAC exists for Mr. Hilliard and other patients like him. TAC exists, ultimately, to save lives.
PASSIONATE AND KIND, A DEDICATED ADVOCATE LOST TO CANCER
This issue of Catalyst is dedicated to Sharra Hurd, a beloved Treatment Advocacy Center staffer. In January 2003, Sharra succumbed to breast cancer after a valiant fight for her life. Sharra was only 31 years old — so young and yet she was wise beyond her years.
I met Sharra through her parents, Dick and Judy Taylor. The Taylors first came to TAC because their son was not compliant with medication needed to control the symptoms of his severe mental illness. They often needed help understanding the laws or making contacts in states that their son traveled to while in a manic or psychotic episode. [Judy Taylor offers her experiences in dealing with a missing family member on page 3 of this issue.] In 2000, we were interviewing candidates for TAC's communications director. Judy told me about her daughter Sharra. Despite her young age, her resume was impressive: she was working as a lobbyist for another national organization, had a masters' degree in mental health counseling, and had established her own practice while living in Germany.
I have a vested interest in the success of TAC because I have siblings and friends who have severe mental illnesses. This is more than a job for me. And I take very seriously the task of building TAC's team of professionals. The communications director plays a critical role at TAC, helping to educate the public and media about the need for treatment of severe mental illnesses. It was so important to find the right person. Something told me Sharra might be that person.
When Sharra came for her interview, I was impressed in so many ways. She was extraordinarily beautiful — tall, blond, athletic. But her true beauty was much deeper. She had the most engaging personality — she was warm, intelligent and very bright. It did not take long to realize that she was driven to do this work. Much like me, she grieved for a sibling whose potential was stolen by a severe mental illness. And she had a quick wit and the most contagious laugh. I knew she was perfect for our team.
Sharra jumped right in and worked hard. I could tell that she loved the work. She told us about her hardworking and successful husband Bryan. She said he laughed because now Sharra was the one who brought work home at night! An article that Sharra wrote about TAC's mission for Paradigm magazine is posted on our website: /GeneralResources/article47.htm.
Shortly after joining us, Sharra learned that her cancer had returned. It was a devastating blow for her and all who loved her. In true Sharra fashion, she fought her illness for two years with dignity, ferocity and humor. She was truly an inspiration to us all.
Dick and Judy Taylor organized a team for NAMI Delaware's Walk for the Mind of America. In their invitation letter, they wrote:
Sharra had fought cancer heroically for 4� years but lost her battle on January 26, 2003. She had received the best treatment and support for her disease. We resent the fact that [our son] has received virtually no treatment in 10 years due to insurance laws, commitment laws and the stigma that surrounds mental illness.
We are all grateful professionally to have had the benefit of Sharra's expertise and to have witnessed firsthand her commitment to helping those who, like her brother, cannot recognize their need for treatment.
And we are personally grateful that Sharra was a part of our lives. Our thoughts are with the Taylors and Sharra's husband Bryan.
Mary Zdanowicz, Executive Director
CALIFORNIA: Sheriff's deputies … “searched today for a schizophrenic woman missing since Thursday [May 1, 2003]. Melvinna Cannon, 30, was last seen at 2 p.m. that day when she left her residence … for one of her typically long walks,” said sheriff's Detective D. Harris. “Her family is concerned because Cannon probably hasn't taken medication needed to treat her schizophrenia, and would be unlikely to give her name if approached,” Harris said. [City News Service, May 7, 2003.]
When a family member is missing, time seems to stand still. Family members describe feelings of panic, worry, helplessness and hopelessness, fear that the police will not find their loved one... and fear that they will find them, after it is too late.
For some families, like the Taylors, whose story appears below, their loved one periodically "checks in," setting off a frantic effort to try to get to him before he takes off again. Other families, like Bob Watkins, hear nothing until a body is found. His son had bipolar disorder and had not taken medication for a month before he disappeared. This May, police recovered the body of Paul Watkins, 29, in a canyon in Nevada.
And some families experience something close to a miracle. Alice Perley's family found her alive after seven years when she walked into a brokerage firm to inquire about an account she thought she had with them. Although skeptical, the broker checked it out — and sure enough, not only did she have an account, but her family had been looking for her for years. She had disappeared after stopping medication for a severe mental illness. "We kind of all in the back of our minds expected the worst," her sister told the Associated Press.
In most of these cases, the person who is missing is unaware that they are sick. Instead, they may believe that they are on the run from the CIA or the mafia. This phenomenon — called anosognosia — affects the majority (55 percent) of those not receiving treatment for severe mental illnesses. You cannot convince someone with anosognosia that that they are sick because they fully believe their delusion. In many cases, the only way to get someone with anosognosia into treatment is via a court order.
Because people with anosognosia who are missing are often times constantly on the move, this presents an additional legal challenge to families trying to get their loved one committed — each state has a very specific law in regard to assisted treatment or involuntary commitment. That can make it especially hard on families who are trying to navigate a law they don't know in a state where they don't live.
The Treatment Advocacy Center can help. For a copy of our summary of laws, state by state, visit our web site at . Select "Legal Resources" then click on "State laws at a glance." You can get a summary in chart form or in text form. If you don't have internet access at home or through your local library, call us at 703-294-6001, and we can send you a copy.
by Rob Christensen, Staff Writer
I dread the telephone calls from my brother. They come from different cities: Omaha, Chicago or Milwaukee. They are placed from public telephones in bus and train stations, from Salvation Army shelters and from locked wards of VA hospitals.
The calls are always the same. The U.S. attorney's office is tracking down my brother, harassing him, planting bugs in his car, sending "snitches" to rap on his ceiling to keep him awake at night.
"Yes," I sigh to the operator. "I will accept the call."
Nobody is sure when my brother's mind broke. There is a fine line between eccentricity and mental illness.
He was a little quirky by the time he entered his 20s and served two tours in the Army as a military policeman. Months would go by without Brad's answering his mail, and when he was home he was surly and demanded to be left alone.
Still, he earned a college degree, married and took a job as a social worker in a prison system. But by his late 30s, Brad was in deep trouble. He'd lost his marriage, his job and eventually his apartment.
For the past six years, Brad has largely lived on the road — fleeing his demons in homeless shelters, cheap hotels or camping in the woods. Occasionally he moves in with our parents. When he gets desperate, he seeks refuge in VA hospitals. But he never stays anywhere long.
The VA doctors diagnosed him as a paranoid schizophrenic. Psychotropic drugs ease his fears but also make him listless.
In the words of his doctors, Brad has "no insight into his illness," which means that he does not think he is sick.
And no family member or psychiatrist or mental health worker can convince him otherwise. Therefore, Brad will not stay in the hospital or take his medications for very long.
Why should he? In Brad's parallel universe, he needs a lawyer, not a doctor. So he spends his days writing letters to law offices, newspapers and government agencies that are rarely answered.
Brad is caught in the mental health system's version of a Catch-22. The system can help Brad only if he asks for help. But Brad is too sick to understand that he is ill. The law presumes that the insane can make rational decisions about their needs.
Nor can he be committed to a hospital unless a judge deems him a threat to himself or others. But Brad does not threaten. He feels threatened.
So he flees from town to town to escape the tormenters that he carries with him in his head. In the past month, he has been in Los Angeles; Philadelphia; Lebanon, Pennsylvania; Washington, DC; Jacksonville, Florida; New York City and New Jersey.
Brad is a big bear of a man. He always looks clean and neat. You would not notice him if you passed him on the street. It takes intelligence, cunning and a strong heart for Brad to hold his life together when he thinks the entire world is out to get him. I don't believe I could do it, if madness struck me rather than him.
There are a lot of Brads out there. And like my brother, they often seem beyond the reach of ill-conceived laws and an inadequate mental health system. So Brad, who turns 48 this week, wanders the country, like an abandoned satellite, endlessly orbiting the Earth.
[Reprinted with permission of the author. Originally printed in the News and Observer, Raleigh, NC, February 23, 2003. Copyright 2003]
WHAT WE LEARNED MIGHT HELP YOUR FAMILY
by Judy Taylor
Having a loved one with mental illness is devastating enough. But when they suddenly disappear and you have no idea how to track them, it's almost unbearable. This happened to our family nine years ago.
Our son was on his way to law school when he experienced his first psychotic episode. We eventually had him committed, but after he was discharged he left the state. Little did we know this would be the start of a pattern.
He would crisscross the USA many times, and even left the country once. Every time he would disappear, he was putting himself in harms way and taking great risks. He even landed in jail in two states for vagrancy.
This is what we've learned in finding our son and bringing him home again. I hope it will be helpful to you.
1. If your family member with untreated severe mental illness takes your car, consider calling the police and reporting it stolen. This may help if they cross state lines. You can also report them missing, give an accurate description or picture, and tell the police about their mental health background.
2. In the first 24 hours, call all your relatives and friends and report that the person is missing. Tell them to contact you immediately if they hear from the missing person. You need everyone on the same page.
3. If you belong to NAMI — call your local group and ask if any other families dealt with this problem and what, if any, ideas they have.
4. Call your government officials and tell your story. We got to know our state representative and she is now trying to help us change our state's dangerous law. [Find your state representative online at www.congress.org, or call your local library.]
The worry of having your loved one missing can be all consuming. Where are they laying their head at night? Are they cold, hungry or in jail? Allow yourself ten minutes of this kind of thinking and worry, then don't go there! Go back to the drawing board — start making calls again. Even if it's non-productive at the time, it'll make you feel better — and who knows, one of these calls could produce a bond that will bring them home. Try to keep an optimistic outlook, as hard as that may be. Try to keep your normal routine — go out with friends even if your heart's not in it.
Know your loved one's habits. We learned and could almost anticipate when he would take off again. As soon as he was under any stress at all or got a little money he was gone.
When you find out which state your loved one is in, call the local NAMI chapter and give them an accurate description of your loved one and their mental health background. Try to build a rapport with the person answering the phone. These wonderful people have actually gone to their local jails and shelters looking for our son. Call back every few days and inquire if they have any news on your loved one's whereabouts. This proved to be invaluable when our son was in Orlando. A NAMI gentleman I had talked to many times over the years was able to get him out of jail and into a psychiatric hospital for evaluation.
Call Mary and her wonderful group at the Treatment Advocacy Center to find out the commitment laws of the state your family member is in, just in case you need to act on it. We were able to get our son off the streets in Oregon and into a hospital after Mary found a commitment law they hardly ever used there.
When your family member does call, keep the lines of communication open. Keep the conversation short and upbeat. If there is a family member that your loved one is close to and will respond to, let that person do the talking on the initial contact calls. Our son was extremely close to his sister Sharra, and sometimes she could convince him to come home. We called this the "Sharra card" and we played this card more than once! [Editor's note: Sharra died of breast cancer in January of this year. See a special tribute to her on page 2.]
We recently got a call from a family whose son was living under a bush in California asking for ways in which they could help their son. I thought a minute, and then decided who better to ask then my own son. He nervously replied he wasn't homeless, he had a tent! He left the room, but did return with this advice:
1. Tell him to look up Social Services in the phone book and ask for help.
2. Go to the Salvation Army — you can shower there and get a meal.
3. Go to the churches and ask the priest or minister for a bus ticket home.
Obviously these were ways he had learned to survive, so they could be good places to start when looking for your loved one.
STATE UPDATES
CALIFORNIA. Los Angeles County is the first to implement Laura's Law (AB 1421), which allows court-ordered outpatient treatment. If successful, more programs will follow. Check out "A Guide to Laura's Law," produced by the California Treatment Advocacy Coalition and TAC, for details on how the new program works and guidance on securing a program in your county. The guide is at: /StateActivity/California.htm or call us at 703-294-6001 and we will mail you a copy.
FLORIDA. A bill to reform Florida's archaic mental health treatment law, The Baker Act, did not pass this session because of a procedural delay. HB 1197 passed the full House by an overwhelming 113-2. SB 2748 passed the Senate Judiciary Committee but did not make it to the full floor in time for passage. The reform effort is being spearheaded by The Florida Sheriffs Association. Read more at: /StateActivity/florida.htm.
MARYLAND. Congratulations to NAMI Maryland for the passage of their Emergency Evaluation bill, SB 273/HB 668. The legislation was enthusiastically passed by the House 119-15 and the Senate 46-0. The new law will eliminate the present-law requirement that dangerousness must be "clear and imminent" before a court may order an emergency evaluation.
NORTH DAKOTA. On April 9, 2003, the Governor signed SB 2296, updating North Dakota's treatment law. Now "dangerousness" can be based "upon evidence of objective facts to establish the loss of cognitive or volitional control over the person's thoughts or actions." Sheree Spear was motivated to change the law after her son tried to commit suicide when she could not get him into treatment because he was not yet "dangerous."
UTAH. The Governor signed SB 27 March 24, changing the standard from "immediate danger" to "poses a substantial danger." More importantly, "substantial danger" is defined to include the serious risk of "serious bodily injury," which includes the substantial risk of "protracted loss or impairment of the function of a bodily member, organ, or mental faculty." The bill also requires that historical information presented to the court be considered. NAMI-Utah, particularly executive director Vicki Cottrell, were great advocates for the bill.
TESTIMONY MAKES A DIFFERENCE
Research and statistics overwhelmingly prove the effectiveness of assisted outpatient treatment and need-for-treatment statutes.
But time and time again, we also see that real stories have tremendous impact.
Many brave family members and consumers who have told their stories publicly say that at first it is a daunting thought to share something so personal — but that it can become an empowering moment, when they realize that the difficulties or tragedies they have faced can enlighten listeners to support a bill, become advocates, or, in the case of legislators, even vote to change a law.
We know many families and consumers who are struggling who understandably need to remain anonymous. Whether you are able to share your experience or not, we thought you would find interesting these examples of people who spoke out.
MY DAUGHTER WAS TRAPPED IN THE SYSTEM
[Irene Darmstedter spoke at a Florida Partners in Crisis press conference February 20, 2003, to raise awareness about the need for increased mental health services funding.]
This is a topic that's very personal to me and to my family. My 26-year-old daughter suffers from bipolar disorder with psychotic tendencies. Her illness began to surface after the sudden death of my 13-year-old son from bacterial meningitis. At the time, my daughter was a straight A student in high school…a wonderful, outgoing person…someone other parents wanted their sons and daughters to be like.
But soon after my son's death, she began using drugs and exhibiting bizarre behavior. She needed long-term residential treatment. But there simply weren't any facilities that would take someone with a serious mental illness and substance abuse problem.
Over the next eight years, she cycled in and out of hospitals and jails more than 30 times. She was arrested for minor infractions such as shoplifting, stealing food and trespassing and often spent months in jail where she was mistreated and abused by a system that was ill- equipped to deal with someone with mental illness. During one psychotic episode in jail, she got into a violent altercation and all of her front teeth were broken.
Finally a sympathetic judge ordered her into drug treatment and granted our family a permanent restraining order to protect our safety. With the restraining order we had a way to get my daughter some safety in jail rather than victimization on the street. But that also failed and she disappeared to the streets.
Every time we heard that the body of an unidentified woman had been found, we thought it was her. We were absolutely desperate to save my daughter. But one of the biggest obstacles to getting her to stay in treatment was that she didn't know she was sick. That's common to people with mental illnesses.
I thought the death of my son was the worst nightmare we would ever have to endure. But this was even worse. I had to take a long leave from my job to protect my family. I also had to put my other daughter in a small private school to ensure her safety. Ultimately I lost my job due to this situation, adding the stress of financial hardship to an already intolerable situation.
Finally, someone suggested that we use the Marchman Act [the Florida law authorizing involuntary treatment for substance abuse] to force her into treatment. I find it ironic that we can force treatment for drug abuse, but not mental illness.
That was when things started to turn around. A doctor at the substance abuse treatment center recognized my daughter's mental illness and put her on a medication that cleared her mind and helped her realize that she needed treatment for bipolar disorder.
Today, she is back in college, getting straight As and making a new life for herself. But it shouldn't have taken eight years to find the right treatment. We need to make access to treatment more available.
I came here today to tell my story because I want our lawmakers and legislators to know that TREATMENT WORKS.
It's difficult to go public like this, but too much is at stake not to. These are biologically based brain disorders…not weaknesses in character. We wouldn't tolerate the incarceration of people with Alzheimer's, epilepsy or Parkinson's disease; why are we tolerating this kind of treatment for people with bipolar disorder or schizophrenia?
I urge our legislators to fund mental health and substance abuse treatment. Thousands of lives are depending on it.
ASSISTED TREATMENT SAVED MY LIFE
[Randy Petermann testified before North Dakota's House Judiciary Committee on March 5, 2003, asking legislators to support Senate Bill 2296. Thanks in part to his testimony, the bill passed.]
My name is Randy Petermann. I had paranoid disorder for over 25 years. I can tell you it's cruel if someone can't get treatment. It's inhumane. If no one had taken the first step to get me help, I'd be dead now because I didn't know how to help myself.
I fought treatment at first too. A lot of people do. Some people fight going to the hospital because they think they're right. They think they should die. Most people are too afraid to admit they need help. Once they get that sick — anything is hard. When you get that sick you think the doctors are against you, too. And there is the stigma. It's still hard for me to admit I was in the hospital because of the stigma.
When I was younger, I knew my thoughts were messed up. I was beating myself up inside all the time and I didn't want to live. When you're suicidal, you are so emotional that you want to go on, yet it's so painful to go on. Killing yourself is the only ticket out. You want it over.
And when you're like that you're not figuring things out. You're just going on impulse. Things are happening so fast when you're suicidal. I was doing things like endangering people by driving recklessly. I was in terrible shape inside.
Without medication I also couldn't keep other people out of my head. Their ideas and thoughts became mine. I needed people to help me rationalize things out. They helped me with this in the hospital.
I fought medication at first like a lot of people do. But I realize now that my life started to take positive steps, to get better, when I had to start taking antipsychotic medicine and got professional guidance and support.
I just wish I'd gotten help sooner because after my second break I lost some of my memory abilities. And I wouldn't be as fragile as I am today. When you have an episode it does cause damage to the nerves in your brain and it's harder to recover.
My son inherited this neurological condition. When he got sick we could all see it. But we couldn't get him in the hospital because people didn't think he was dangerous. But he was a danger to himself and almost committed suicide.
Why does someone have to become dangerous before they can get help? It isn't asking a lot to be able to get someone help when they are that sick.
This bill will save lives. People who are against it think it's wrong to put someone in the hospital if they don't want to go. But someone who is that sick isn't thinking clearly. They can't help themselves. At that time they might not think they want to go to the hospital. But no one wants to kill themselves either.
Please vote to pass Bill 2296.
LAW FAILED OUR SON
[Karen and James Logan testified before the Maryland legislature on treatment reform after they were denied treatment for their son. In part because of testimony from family members like the Logans, Maryland was able to improve its emergency evaluation standard.]
Our son James Logan began exhibiting signs of paranoid schizophrenia. We recognized the symptoms because this serious disease had already occurred in his paternal grandmother and his uncle. We had taken him to the emergency room of a local hospital for treatment that night; we were told he should come back in the morning.
On Monday, August 26, 2002, our son went to the hospital and was seen by the attending psychiatrist and was told he should be admitted immediately for diagnosis and treatment. However, due to the nature of the illness, our son did not feel he needed any treatment and he refused to sign any hospital admission forms. Under current law physicians can not admit an adult into the hospital against their will, even though the individual is gravely disabled and incapable of making a rational decision about their well being. Currently they must present a danger to the life or safety of the individual or others. The doctor did not believe James met this criteria at that time. However, if he became violent, the doctor said we could call the police and ask them to bring James back to the hospital.
We continued to look for alternative treatment for our son to no avail. He refused all treatment because at the time he could not understand that he had a brain disorder that needed treatment.
As our son's condition deteriorated; it became obvious that his life as well as others could be in danger. Peace officers were called on August 28, 2002, however they did not witness any dangerous aggressive behavior so they did not petition for an emergency evaluation. The only choice set before us was to file a "Petition for Emergency Evaluation" with the Court. The petition requires the ruling by a Judge before an emergency evaluation can be done. Our son's condition had now become so severe we thought we could convince a Judge that the danger was imminent. The petition was authorized by the Judge.
By the time we were able to obtain the proper authorization for an emergency psychiatric evaluation on August 29, 2002, our son's condition had extremely deteriorated. Two Deputy Sheriffs lost their lives while trying to serve the "Petition for Emergency Evaluation.” Our son has been incarcerated since this time, and our family has suffered greatly because of this tragedy. The families of the two Deputy Sheriffs are suffering as well. We have kept their families in our prayers and we will continue to do so.
If the attending psychiatrist had the authority to admit our son involuntarily under the gravely disabled standard (which did not pass the legislature last year), perhaps this tragedy would not have occurred.
The emergency evaluation standard currently proposed in SB 273 could also have averted this tragedy. Although SB 273 does not propose a gravely disabled standard, it does require the dangerousness standard for an emergency evaluation to be the same as the dangerousness standard for involuntary hospital admission. This could also have averted the tragedy. SB 273 would have allowed the peace officers on August 28, 2002, to take into account other pertinent information, enabling them to make a better decision. This would also have eliminated the traumatic experience of pleading with a Judge to grant a petition. Also, under SB 273 we could have petitioned for an evaluation before the danger was imminent.
Please vote in favor of SB 273. Save the lives of people who are ill through no fault of their own and others trying to help them. Prevent needless tragedy from striking more Maryland families.
DID YOU KNOW?
TAC's web site, , offers visitors a number of unique resources.
? Preventable tragedies database. Includes summaries of published news articles in which an individual with a severe mental illness (usually untreated) is involved in a violent episode, either as a victim or perpetrator. Searchable by state, date, keyword, or type of tragedy: /ep.asp
? News ticker. Offers links, updated each weekday, to recent stories in the news related to the consequences of lack of treatment: /PressRoom/index.htm#newsticker
? Catalyst archives. Read issues you missed, or print copies for a conference or class. Especially helpful is the "Welcome" edition, which is in great demand for meetings: /joinus/Catalyst.htm