In New York State it's easier to put someone with severe mental illness in prison than it is to hospitalize them. To hospitalize someone, against their will, families must prove that they are a danger either to others or to themselves. Our history clearly illustrates how many ways one can be a danger to themselves without actually attempting suicide. Had AOT existed earlier, the past 15 years of my daughter's illness would have been very different. Our daughter was attending a large state university in the Midwest and had been very, very sick for almost a year before we were able to get her hospitalized. She was not suicidal or a danger to others and since she was legally an adult, we were unable get her home. Finally the police were called by friends who also feared her behaviors put her at great risk for injury. She was handcuffed and hospitalized. That hospitalization lasted eight days. The hospital said she was "stabilized" and released her with a bottle of medication and no discharge plan other than to return to the clinic for a refill in two weeks. She immediately stopped her meds and very soon became sick again. We got a frantic phone call from her friends saying that she was standing in the center of the busiest eight lane street in Madison and screaming incoherently. We still could not legally force her to come home to New York even after numerous attempts by ourselves and other family members.

Eventually we did get her home and the next 15 years have been a series of seven forced hospitalizations, always followed by non adherence, heroine abuse and homelessness. She (her quote) "chose" the streets rather than stay at several excellent residential programs. During her periods of homelessness she was raped, she was beaten and was having sex for drugs with I don't know how many men. She contracted almost every sexually transmitted disease. But for the needle exchange she would most likely have been infected with the AIDS virus. When she agreed to move back home she remained non compliant and we were still unable to keep her safe or to get her hospitalized. She would not accept any treatment.

One afternoon I discovered her in her room not breathing, she was blue with her eyes open, pupils fixed and dilated. This was from an accidental overdose of heroine. That was what it took to get her into a hospital. At one time, because of the lack of judgment that her illness causes, she used saliva and aloe gel from a house plant to dilute the heroine which she was injecting. Her illness obviously caused her to think that it would be ok. It caused an enormous abscess on her arm which went neglected and hidden for many weeks and nearly cost her her arm. That was what had to happen to get her hospitalized once again. There are dozens of other horrible stories I could include here, many worse and one actually involving the death of a young man trying to keep her from running across the Grand Central Parkway. She began making numerous telephone threats to people whom she believed were out to hurt her. The police have been called several times and once she had to appear at a hearing in New Jersey for her threatening behavior.

None of that obviously ill behavior was enough to get her into a hospital. All along, she insisted that she wasn't ill. I now understand that a lack of insight into one's own illness is a symptom of major mental illness. It can also be a symptom of other trauma to the brain such as stroke, head injury and lesions of the frontal lobe. This lack of awareness is a symptom, as much as delusions, hallucinations, paranoia etc. are. It is not denial. It is not fear of stigma. My daughter and a very high percentage of others who are mentally ill are unable to take the responsibility for treatment themselves because they cannot -rather than will not-- see themselves as sick. Does that mean that we just allow them to continue to be so sick and such a danger to themselves by their behavior when there is treatment available? When there is hope for them to regain a productive and safer life. Had AOT existed fifteen years ago, I believe that our daughter would never have been homeless. She wouldn't have had to go through surgery for a pre-cancerous condition caused by one of those STDs contracted while living on the streets of this city.

Imagine that there are two people with two different brain diseases wandering and lost on the streets of New York City. One of those people has their photo shown on the TV news with their family pleading for their safe return. That person has a brain disease called Alzheimer's. The other has a mental illness. No one is helping families to look for that person to keep them safe. They are sought only if they commit some act of violence for which they could be arrested. Would we as a society ever ague that we are violating the civil rights of someone with Alzheimer's? Would we argue that individuals with that particular brain disease have the right to remain on the street unsafe? No, of course not. We help them. We don't blame them. People with mental illness deserve those same acts of compassion. Major mental illness is a biological brain disease just as Alzheimer's is, but its victims are stigmatized and blamed for the behavior that they cannot control.

AOT is all we have to keep our family members safe. If our laws will not admit that my daughter is sick and needs protection, why should she? Families cannot force their loved ones to take medication. By coming down hard on the issue of treatment, families risk losing the ill person to the streets. Our daughter had shown her willingness to sleep in doorways rather than live at home and take medication. We feared that she would never gain any insight. I once asked a psychiatrist friend how my daughter could ever accept treatment without insight. He said that in his experience, many people with major mental illnesses don't necessarily come to have insight, or they have very limited insight. He told me that most however eventually come to accept treatment simply to stay out of the hospital. That is if they survive the illness long enough.

A psychiatric unit is an awful place to be. To be forced to be an inpatient must be terrible. But it is a safer place to be, not a punishment. In the absence of insight it's fine with us if she stays in treatment to avoid another hospitalization. My daughter was last hospitalized for six weeks at Bellvue Hospital during the summer of 2004. During her stay, Bellvue's caring staff, after hearing her history, applied for AOT for her. They said that they wanted to do whatever they could to prevent another revolving door hospitalization. It was the order of AOT that has made this last hospitalization different from all the others. She was assigned a professional and understanding case manager who my daughter likes and trusts. She's currently attending a day program for people with co-occurring disorders. That means mental illness and substance abuse. (These disorders must be treated together.) Upon her release from Bellvue she was prescribed an injectable antipsychotic, administered every two weeks at her day program. She was doing very well for five or six months. However, one of the side effects of the meds was a fifty-pound weight gain and so the psychiatrist at her day program permitted her to switch to an oral medication, taken on her own. This new medication didn't have the weight gain side effect. Soon after going off the injectable meds she became symptomatic once again as it became obvious that she was not taking her medication. We immediately called her case manager, who saw her right away and threatened to enforce her AOT order and send her back to Bellvue.

That was ten weeks ago. The threat of re-hospitalization worked. AOT worked. She restarted her meds the next day and is again sounding and doing well. She knows that someone is paying attention. She now admits to liking and needing her day program. AOT has kept her involved with her treatment long enough to allow her to begin to gain insight into her illness slowly but surely. She is interviewing for part time work and hopes to finish her degree. We're all looking forward to a better and safer future for her. Without AOT this last hospitalization would have been just another, in what has been a long series of temporary crisis interventions. Her father and I have absolutely no doubt about that. I have trained to teach a family education curriculum for NAMI-NYC Metro. I've been teaching this class for five years to families with stories much like our own. I answer calls at the NAMI Helpline. NAMI gets approximately four hundred calls a month. The calls are from family members, friends, consumers and professionals. I think that my direct contact with the many people who have taken the Family to Family class as well as the hundreds of people I have spoken to on the Helpline enable me to speak about this today. I speak from experience and I speak from my heart. Without AOT in the future, next time my daughter may not make it out alive. Having someone we love suffer and struggle with a major mental illness leaves us feeling helpless and hopeless. AOT has been the first glimmer of real hope for helping the ones we love so much begin to take the life changing steps toward recovery.

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