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Testimony on Kendra's Law

Testimony of

Arlene Steinberg

[Address removed]

New York, New York

before the

Assembly Standing Committee on Mental Health, Mental Retardation and Developmental Disabilities

April 8, 2005

Mr. Chairman and members of the Committee, the purpose of my testimony is to support the permanent extension of Assisted Outpatient Treatment (AOT) under Kendra’s Law.   I offer my personal experience as a mother in the hope that you will understand how critically important this law is for helping people like my son to get the treatment they so desperately need and to prevent other tragedies. 

My 40 year-old son suffers from schizo-affective disorder, a form of schizophrenia that is complicated by a mood disorder.  It is, of course, impossible for me to fully portray my son and his history in the 10 minutes I have been allotted but I will do my best to explain what Kendra’s Law has meant to my family.

My son is the youngest of three children.  He had his first psychotic episode when he was 15 and was hospitalized for seven weeks.  Although he managed to finish high school, he barely finished one year of college.  Although he is highly intelligent, handsome, and   personable , he has worked only sporadically at  jobs like delivering pizza and conducting telephone surveys.  He has never maintained a job for more than a month or two.  He has never had the opportunity to develop long term relationships, much less start a family of his own.  At times he barely is able to care for himself.  For as long as I can remember he has operated under grandiose delusions that he is a rock star, or a film producer, or the founder of a worldwide political organization.  He is currently living at home with me and my husband on the Upper East Side, but there have been times he has lived on his own, sometimes with disastrous results.  There have also been periods of estrangement, and very long stretches when we did not know where he was living. 

He refuses to voluntarily take anti-psychotic medication.  When he is not on medication, his behavior is unpredictable and, as I will describe below, sometimes dangerous.  Like many others with his illness, he has often used alcohol or illicit drugs to self-medicate, which exacerbate his symptoms.

It is hard to adequately convey what it is like to lose a smart, funny, sensitive child to mental illness, and to constantly worry about his safety and his future.  But it is even more heartbreaking to know that effective medication is available to treat this terrible illness, but that my son refuses to take it.  Not because he has made a conscious, well-informed choice that his life is better without medication than with it.  I can assure you that he has not.  Rather, the very nature of his illness prevents him from even acknowledging that he has an illness, much less recognizing the impact of his illness on himself and others.  This lack of insight is incredibly hard to understand unless you have experienced it first hand, and even then it has taken me many years to accept this reality. 

As sad and difficult as my son’s illness is on a personal level, that is not why I am here.  I know that many families cope with equally devastating illnesses and disabilities on a daily basis.  But imagine what it is like to be petrified that, because of his illness, your usually kind, gentle son will hurt himself, or you, or your grandchildren, or, g-d forbid, someone else, during a psychotic episode and that you are powerless to do anything until after it may be too late.  Imagine what it’s like to see your son hanging off the balcony of your 14th floor apartment.  Imagine what it’s like to have your son physically attack his father at Thanksgiving dinner, with the family’s guests and their children hiding in the bedroom.  Imagine what it’s like to have your son threaten the safety of his older sister’s children, my grandchildren.  Imagine what its like to have your son slam you against the wall when you go to visit him in the hospital because he is so angry that he is there.  Imagine what it’s like to get a call from the police that your son is hanging around the local high school making inappropriate and menacing comments to the students.  Imagine what it’s like to read the horrible headline in the New York Post and to realize that your son’s history is not so different than Andrew Goldstein’s.  That is very hard to admit publicly.  But that is why you must not allow Kendra’s Law to lapse.

Over the past 25 years, we have tried unsuccessfully to get my son to comply with treatment, consulting with “the best” psychiatrists and other experts on non-compliance, and trying countless strategies.  Kendra’s Law has given us the first glimmer of hope that we have had in a very long time.  Before I tell you about the impact that Kendra’s Law has had on my son’s life, I just want to take a moment to address those who may be opposed to the concept of forced treatment. 

For the first eighteen years or so after my son became ill, because the mental health system was so inadequate, and his first hospitalization so traumatic, we refused to have my son hospitalized against his will no matter how psychotic he became.  It is a miracle that he survived, and that no one else was hurt.  His condition ultimately deteriorated to the point that we felt we had no choice, though I can tell you that my husband was still not comfortable with the idea of treating our son against his will.

Since then, my son has been hospitalized involuntarily on five occasions because he was deemed a danger to himself or others.  He clearly should have been hospitalized many more times but for my family’s frustration with the system and our reluctance to have him committed against his will. 

Once he became part of the system, the cycle was predictable, and the revolving door all too familiar.  My son would be admitted to the hospital, medicated against his will, and, as soon he was stabilized, discharged with no meaningful treatment plan in place.  Although the hospitalizations were extremely difficult, we were relieved that he was safe and off the streets.  We also had a chance to see that medication worked and optimistically viewed each hospitalization as an opportunity for my son to finally start treatment and get his life on track.  Unfortunately, my son did not have the insight to realize that the medication helped him, and once he left the hospital, he stopped taking it.  The hospitalizations did nothing to address my son’s lack of insight or non-compliance.  One hospital’s idea of a discharge plan was a subway token, a prescription, and directions to a homeless shelter.  It was a constant and exhausting struggle.   All we wanted was a chance for our son; all the hospital wanted was to get him out the door as quickly as possible.  One prestigious hospital literally slammed the door in our face when we tried to prevent his discharge without a plan of action for follow up treatment. 

Kendra’s Law broke the cycle.

In December 2003, my son was living alone in an apartment, this time in Westchester County.  He had once again stopped taking his medication and was becoming more and more psychotic.  Although we knew our son was decompensating, because he did not meet the stringent standard for involuntary hospitalization, there was nothing we could do other than hold our breath.

Then tragedy almost struck.  As we learned after the fact, my son’s apartment was filthy and uninhabitable, with piles of trash everywhere, including the oven.  He was living in squalor, scribbling on the walls and slashing red paint all over.  He had disconnected the smoke detectors.  Cigarette butts were strewn about, and there were burns in his carpet.  One evening he turned on his oven and left his apartment to go to the store.  Because of his deteriorated mental state, he apparently did not realize that the oven was filled with paper, or did not appreciate the consequences of his simple action.  Of course, the papers caught fire.  Smoke invaded the apartment next to his.  Fortunately, his neighbors were home and awake.  They called the fire department and the fire was contained before anyone was hurt.  But it could have been very different.

Because of this incident, my son was once again deemed enough of a danger to be hospitalized.  But this time, because of Kendra’s Law, his hospitalization was different. 

Before Kendra’s Law, it was difficult to get anyone to pay attention to his condition.  The hospital staff knew what we knew –nothing could be done once he left the hospital to keep him on his medication.  There was very little incentive for them to do more than what was minimally required to get him ready for discharge. Why bother?  

The availability of AOT changed the way the hospital staff and administration viewed my son and his treatment.  They were forced to grapple with my son’s history and most significantly, the potential for tragic consequences if he were released without a plan for follow up treatment.  The hospital’s ability to get a court order to back up a discharge plan made them more willing to invest the energy needed to ensure he received the care that he needed.  Now they knew that if they went to the trouble of getting him placed in an appropriate outpatient facility, he would have to go there.

This time, instead of being left to his own devices, my son was discharged from the hospital with a referral to a residential MICA program in Westchester and an AOT order requiring his treatment.  He participated in the program for five (5) months.  He was followed by an ACT team.  I can’t say that he didn’t sometimes complain, or that it was a perfect situation, but the staff was professional and truly dedicated to his recovery, and we never saw him in a better frame of mind.  He was more relaxed than he had been in a very long time.  He took his medication and stopped drinking.  His interpersonal relationships were very different.  He was able to participate in family events, and to spend the weekends with us. 

I would love to end here and tell you that he lived “happily ever after.”  Unfortunately, before my son completed the full program, he eloped to another state where the court order had no effect.  When he finally returned to Manhattan, we were told that Westchester County had no authority to enforce the AOT order across county lines without my son’s consent.  But, he made more progress in five months than he had in 20 years.  Clearly he still has a long road ahead , but for the first time I feel there is hope.  Kendra’s Law changed the way the system responds to individuals like my son.   AOT  not only gives hope to consumers and their families, it is a powerful tool for professionals in the mental health system who were helpless without it.  His participation in the MICA program allowed my son  to stop drinking, which has made him less symptomatic.  I wish I could say that he is a willing participant as far as medication is concerned.  But we live in hope.  And, because of Kendra’s Law, if he starts to deteriorate again, we know that the system will take his illness seriously, and that he can be forced to take his medication. 

So please don’t let Kendra’s Law end - have it be effective so that each county has jurisdiction over ALL the counties of New York State.  And no matter what, make AOT a permanent part of New York’s Mental Hygiene Law.

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