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Testimony on Kendra's Law

Testimony

of

Suzanne (Webdale) Johnson

Before

The New York State Assembly

Committee on Mental Health and Developmental Disabilities

April 21, 2005

Good Morning. My name is Suzanne Johnson and I have worked in an outpatient mental health clinic for nearly 11 years. Six years ago I had some tough decisions to make. I was working in a clinic providing services to clients with severe mental illnesses, when a man with a mental illness, who was not taking his medication, killed my sister Kendra. His history, as it unfolded in the newspapers was not so unlike some of the clients that I encounter every day at my job. My family members were new to the world of severe mental illness and we all grappled with our emotions about what to do next to manage our grief.

It is not uncommon that families will seek to make positive changes in honor of their loved ones as part of the grieving and healing process following the loss of a loved one. We also wanted to make changes that could prevent another family from the pain we were enduring.  I remember my first meeting with the Attorney General, learning about the concept of Assisted Outpatient Treatment. I had many questions, as I was familiar with the system’s limitations in effectively treating those with severe mental illness. I did not want my sister’s name associated with something that would not improve the lives of those it was targeted to help, as I think that is the best way to honor her life. Throughout that meeting, and in the weeks following, I talked to people, read studies and books, and reflected on my experience in working with this small but high risk population. I became convinced that AOT was a necessary treatment option for severely and persistently mentally ill individuals and their families that are without hope, because their loved ones no longer act like themselves due to the decompensation that results from the lack of treatment.

I want to give you a brief idea about what it is like working with people who are so impaired that they cannot adequately function in a healthy way. One client believed he saw words coming out of my forehead. He believed a higher power of some kind was allowing him to view my thoughts. It didn’t matter how empathetic or how gentle a touch I had, I could not compete with an image that words were coming out of my head. This client believed 100% that he was acting APPROPRIATELY for such a situation. It would be like if someone tried to convince me my name is not Suzanne Johnson.  No amount of therapy can change a person’s delusional fixed beliefs, because they are as real to them, as my name is to me.

Another client went into rages, and had difficulty controlling his thoughts, and fighting impulses to harm his child, every time he stopped his medication. Another completely stopped seeing his family because voices were telling him to rape his family. He believed someone put electrodes inside of him to monitor his every move. Another person heard voices that told her to urinate in her pants whenever she rode the bus or was in public places. I could go on, but my point is that these people are in turmoil. They are not just making individual choices about how to live their lives or the best way to receive treatment; the clients I am talking about are delusional and are experiencing episodes where they are out of touch with reality. People in a rational state of mind do not make the kind of choices these people are making. Individuals who are left untreated with severe psychotic symptoms can suffer irreversible consequences, such as the loss of relationships, self worth, jobs, family support, guilt, shame, and a lowered level of baseline functioning. They tend to be isolated, lonely, scared, confused and do not have the social skills to make friends.

It is a terrible and uncompassionate argument that a person, such as I am describing, has a right to decline treatment that is likely to improve the quality of his/her life. That is inhumane to me. Another argument I have heard is that that assisted outpatient treatment destroys the therapeutic relationship, I believe it is better to have a damaged relationship that you can rebuild together than to not have a relationship at all. Through the years, I have had clients upset with me because I contacted Child Protective Services, or Crisis Services when a situation warranted. Very few times have I ever had a client unwilling to work through these issues with me; and on the rare occasion that they choose to work with someone else, they frequently stayed linked in treatment at the very same clinic.  We have the power to intervene, to help keep families together, to keep individuals and families safe and to help them have the most satisfying lives possible.

This is not a perfect law to fix all the inadequacies in an overloaded system. However Kendra’s Law is a necessary option because for some individuals there really are no other options left. It is my hope that in making this law permanent, positive changes can be made to further enhance it’s efficacy, such changes include better coordination between counties, a smooth transition when clients changes counties, and addressing the number of counties that are utilizing an AOT Diversion plan. I would also like to see Diversion better defined, with the ability to enact a court order if said client is not following through with the diversion agreement. In addition, reducing caseloads to more manageable levels, having better defined roles between service providers, and cutting down on wasted time with redundant paper work.

Kendra’s Law is at it’s best when it is used appropriately, and fully understood and believed in by all team members involved in the provision of AOT services. The divisiveness within our system, among service providers, consumer groups and others involved diminishes our ability to provide the best services possible. It is hard to engage consumers and family members who are given mixed messages within the same treatment community. 

I have seen changes in my clients who are treated appropriately with medication and the help of caring and skilled professionals that quiet these inner demons. I don’t know why some clients can be persuaded to try medication even though they don’t believe they are ill and why other people adamantly refuse it. I don’t know why for some, their insight and judgment improves with time on the medication and others never believe that they are mentally ill or that they need medication. What I do know is that I have seen clients lives improve, through both voluntary and involuntary treatment. I have seen a sense of humor where there was no emotion before. I have been honored to witness clients awakening to life when they had been hidden under a shell of their mental illness. I have had the privilege to have heartbreaking, insightful conversations as clients have begun to consider that they have a problem with their brain called a mental illness and I have grieved with them while remaining hopeful that they can have quality futures with jobs, families, school, fun and love…

AOT has the power to help people live more fulfilling and safer lives. Thank you for your time.

Suzanne Johnson

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