NAMI NYS Memo of Support for Kendra’s Law (2011) and NAMI/NYS Study (2005)

To: Assemblyman, Felix Ortiz, Chair, Assembly Mental Health Committee
CC: Assembly Mental Health Committee Members
From: National Alliance on Mental Illness, New York State (NAMI-NYS)
Re: Assembly Bill A6987-The Enhanced Version of Kendra’s Law
Date: May 24, 2011

Chairman Ortiz,

The National Alliance on Mental Illness-New York State (NAMI-NYS) supports Assembly Bill A6987, introduced by Assemblywoman Gunther, which would enhance the assisted outpatient treatment program known as Kendra’s Law.

NAMI-NYS represents New York’s families who have loved ones living with mental illness. A major concern we hear almost daily from families around the state is: what can be done when their loved ones stop taking their prescribed medication and reject treatment? Sometimes, our families are helpless once their loved ones begin to decompensate due to noncompliance with treatment. They fear the potential tragic results that could occur as their loved one’s mental illness sometimes makes them a danger to themselves and others.

The enhanced version of Kendra’s Law would close some of the loopholes that exist as the law is currently constituted. The new bill will require mental- health officials to examine the records of those with mental illness who are being released from the criminal justice system and those discharged from hospitals and treatment facilities who have demonstrated past behavior that can be considered a danger to them or others, to determine if they need court- ordered treatment. The bill would also require officials to investigate when concerned families provide credible information that a loved one is mentally ill and in need of treatment to prevent deterioration.

NAMI-NYS asks you to listen to the concerned pleas from families who love their relatives with mental illness and only wish to maintain their well-being and safety, by supporting bill A6987 and improving Kendra’s Law.

Memo of Support

To: Senator, Roy McDonald, Chair, Senate Mental Health and Developmental Disabilities Committee
CC: Senate Mental Health and Developmental Disabilities Committee Members
From: National Alliance on Mental Illness, New York State (NAMI-NYS)
Re: Senate Bill S4884-The Enhanced Version of Kendra’s Law
Date: May 24, 2011

Chairman McDonald,

The National Alliance on Mental Illness-New York State (NAMI-NYS) supports Senate Bill S4884, introduced by Senator Young, which would enhance the assisted outpatient treatment program known as Kendra’s Law.

NAMI-NYS represents New York’s families who have loved ones living with mental illness. A major concern we hear almost daily from families around the state is: what can be done when their loved ones stop taking their prescribed medication and reject treatment? Sometimes, our families are helpless once their loved ones begin to decompensate due to noncompliance with treatment. They fear the potential tragic results that could occur as their loved one’s mental illness sometimes makes them a danger to themselves and others.

The enhanced version of Kendra’s Law would close some of the loopholes that exist as the law is currently constituted. The new bill will require mental-health officials to examine the records of those with mental illness who are being released from the criminal justice system and those discharged from hospitals and treatment facilities who have demonstrated past behavior that can be considered a danger to them or others, to determine if they need court-ordered treatment. The bill would also require officials to investigate when concerned families provide credible information that a loved one is mentally ill and in need of treatment to prevent deterioration.

NAMI-NYS asks you to listen to the concerned pleas from families who love their relatives with mental illness and only wish to maintain their well-being and safety, by supporting bill S4884 and improving Kendra’s Law.


TESTIMONY OF T HE NATIONAL ALLIANCE FOR THE MENTALLY ILL OF NEW YORK STATE (NAMI-NYS)
IONE CHRISTIAN, PRESIDENT

before

THE NEW YORK STATE ASSEMBLY COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES

at the

HEARING ON ASSISTED OUTPATIENT TREATMENT, OR “KENDRA’S LAW”

April 8, 2005

Deputy Director

My name is J. David Seay and I am Executive Director of the National Alliance for the Mentally Ill of New York State (NAMI-NYS) which represents 5,000 members and 58 local affiliate organizations throughout New York State, the vast majority of whom are family members. With me today are Patricia Webdale, Kendra’s mother and also a NAMI-NYS Director and co-chair of our Kendra’s Law Committee, who is testifying separately, Sherry Grenz, co-chair of the Committee, Judith Beyer, NAMI-NYS Director and co-chair of our Government Affairs Committee and Jeff Keller, Deputy Director. We thank you for the opportunity to present our testimony today. A full written Statement has also been submitted for the record.

On March 9th of this year we released a special “White Paper” Report on “Assisted Outpatient Treatment Through Kendra’s Law.” Our report was based on interviews with 20 families that are members of our organization and who have loved ones who have been or are being served through Assisted Outpatient Treatment (AOT). The report uncovers some lessons in their experience with AOT during its five-year trial period, which concludes June 30th. The Report has also been submitted and we respectfully ask that it be made part of the record as well.

Based on our research for the report, and the experiences of many others we have talked with after the report came out, we ask that a permanent Kendra’s Law be enacted before the current one expires. There is every indication that the law has proved its worth. Many of our families are fearful of what would happen to their loved ones in AOT if the law were allowed to expire or “sunset.” Attached to this testimony are five letters from family members who couldn’t be here today. All of them say, in one way or another, that AOT saved the lives of their loved ones. They attest to the need to keep it going.

Today I would like to discuss what our research didn’t find as well as what we found, which is reported in the white paper. One of the things we were afraid we might find was that the law wasn’t working because of a lack of “teeth.” When it was passed, many feared it would be too weak to work at all. We didn’t find that.

What we found is that the law works well most of the time, but by no means all of the time, in the most part because of the leverage created by its judicial authority.

We believe it works well largely because the individuals it serves are for the most part law-abiding citizens. People, with or without mental illness, tend to obey court directives.

Some say that taking someone to court who hasn’t done anything criminal is wrong, ignoring the huge body of civil law that Kendra’s Law is part of. The fact is that laws are made for the law-abiding, also, and this law in particular is designed not to punish but to help.

According to the Office of Mental Health report, about a quarter of those who have completed their Assisted Outpatient Treatment had been incarcerated at least once prior to beginning AOT. They had been in the criminal system, and because of Kendra’s Law, they wound up in a civil court instead, through the AOT hearing process. After that, incarceration decreased 87 percent with this population. In other words, many people who probably would have been incarcerated again had there been no Kendra’s Law, are not being incarcerated. Over the same time comparison, the incidence of arrest, psychiatric hospitalization and homelessness for this population declined 83 percent, 77 percent and 74 percent respectively. These are dramatic and positive outcomes.

In general, the experience of our families backs up the findings of the OMH study. We found that Kendra’s Law works, and works well when properly implemented.
Implementation varies throughout the state, however, and so do the results.

One thing we did not find was that those counties that were providing very little or no AOT were somehow providing better services that obviated the need for AOT. In general, the counties that have provided little or no AOT provide services that are fewer, farther between and of a lower quality than those counties that provide AOT on a regular basis. Essential resources, such as housing, are scarcer. They have jail populations with a high percentage of psychiatrically disabled inmates, and higher per capita suicide rates. These counties have areas where the availability of mental health services is very limited – too limited, in some instances, to effectively provide AOT.

Why aren’t these places providing AOT? Because they aren’t. Upstate, where the non-AOT counties are located, the amount of Assisted Outpatient Treatment that is provided is directly related to the number of counties in an OMH Regional AOT Coordinator’s service area. A related fact is that there is no financial incentive to provide AOT, since funding for it is put in a block grant which local community services directors can spend however they choose, whether or not they use AOT at all.

We have been told that, rather than provide AOT, the Director of Community Services of Ontario County – which, we understand, has not conducted even one AOT investigation — simply waits until individuals decompensate enough to be put back in the hospital. We fail to see how resorting to this more restrictive level of care is a more enlightened or progressive approach.

Some say if only there were more resources for more or better services, there would be no need for the judicial authority in AOT. We did not find this. The families we interviewed consistently said the court orders were absolutely necessary for their loved ones and that AOT would not have had a chance of working without them. These are families that have tried everything else the system had to offer. Their loved ones might not have liked AOT, at least at first, but they complied with the court order because it was a court order and the law, and it gave them a chance in life. It rescued them.

AOT providers told us that service enhancements and voluntary agreements would not work without having the court process as a viable recourse.

As for the providers’ side of the coin, without Kendra’s Law, it would take not only an abundance, but a superabundance of services to induce mental health care providers to serve many of those who are now being served through Kendra’s Law, simply because they are the hardest to serve.

There are more than enough cases that are not as difficult as AOT cases to fill providers’ quotas, and before Kendra’s Law, these were the ones that received services, while the noncompliant were left on the street. Just giving providers more resources but not requiring them to do their jobs will not be in the best interest of the most severely psychiatrically disabled or society.

Resources and services are a major factor in whether Assisted Outpatient Treatment will be successful, and in some cases, we did find them insufficient to deliver quality AOT. Our white paper touched on this only lightly, however, because this is a budget issue best dealt with as a part of the funding of AOT, and, more generally, the mental health care system as a whole.

Another major factor that affects AOT is whether recipients have been successfully stabilized in a hospital before they begin AOT; but again, hospital stabilization is a separate issue.

In the white paper, we focused on accountability issues, which came up with our families time and again. Accountability should not be and is not a separate issue. It is directly related to the law itself. Besides making the law permanent, our major recommendation for you is to enable the Office of Mental Health to make localities accountable for AOT. OMH must be given the responsibility, on a case-by-case basis, to ensure that localities responsibly investigate potential AOT cases, submit a petition for a hearing, provide the services called for by a treatment plan or correct service deficiencies. It is important to “get this in writing.”

Our research also resulted in a recommendation that the law enable families to effectively petition for AOT. Although the law authorizes them to do so, the way it is written makes this virtually impossible.

AOT investigations should take no longer than 30 days, unless there are extenuating circumstances, and, after that time is up, we want the potential petitioner who requested the investigation to either be told that AOT is being pursued or why it is not.

The potential petitioner should be able to appeal the case to an OMH Regional Coordinator.

Besides providing for more accountability, there are other ways the law should be made more effective. AOT court orders need to be more easily transferable, in some manner, from county to county. Settlement agreements must be included in the law that allow the subject of an AOT petition to, after consultation with counsel, waive his or her right to a hearing and enter the program.

There should be a written, court-sanctioned version of voluntary agreements. Currently, voluntary agreements are non-formalized ad hoc deals for individuals to take services instead of going to court. Recognizing them in the law should be considered, but only if they have required standards. They should be signed, include a treatment plan with a minimum of case management, and stipulate that, if they are broken, the signer would be subject to the AOT court process. A voluntary agreement should also only result from a standardized evaluation process with benchmarks that justify using it instead of an AOT petition.

Also, the law should provide that local courts designate judges for AOT hearings and lawmakers should urge, in the new law’s Message of Intent, that those judges be educated about the law, and about mental illness itself.

Because the purpose of Assisted Outpatient Treatment is to move persons to full stability as a basis for recovery, and because persons on AOT rarely reach full stability within the first six months of treatment, we recommend that the initial period be changed from up to six months to up to a year. The law already allows for a procedure through which an order for someone who no longer needs AOT can be terminated.

Finally, if a person meets all of the stringent criteria for AOT but is not likely to benefit from AOT, the reason probably is that he or she is simply too ill and unstable and probably belongs in a hospital. Therefore, if someone is denied AOT solely on the “not likely to benefit” criterion, we would like his or her case to automatically be reviewed to see if a higher level of care is warranted.

When we talk about Assisted Outpatient Treatment, we talk about a level of service that is only for a few, very rare and severe cases. Over five years, court orders have been issued to 4,100 out of 19 million New York residents and the estimated 227,000 persons with severe psychiatric disabilities.

Of those who are being served by AOT, “noncompliance,” perhaps the key AOT criterion, is, in the majority of cases, a result of anosognosia, a physiological symptom of psychiatric disorders that cause a lack of awareness that one is ill. I can consider the fact that I am required by law to wear glasses when I drive to be forced treatment. But I must wear glasses if I want to maintain control over my vehicle. If I refuse to wear them, for whatever reason, my driver’s license can be taken away. If people need treatment on an ongoing basis to maintain control of their lives, and they refuse such treatment, morally, we can no longer take away their license to live. That is the conclusion that was reached when Kendra’s Law was approved by the Legislature five years ago.

Before the law was enacted, those with the most severe psychiatric disabilities were relegated to the streets, hospitals, jails and prisons, the homeless shelters and the cemetery. Kendra’s Law was designed to prevent that, and it does. Five years of experience has proven the law’s worthiness. We believe it should be strengthened in certain areas, but the bottom line is that it should be permanent, and it should be enacted before June 30th, in order not to disrupt the lives of those who are receiving Assisted Outpatient Treatment and their families.

We thank you again for the opportunity to be heard today and stand willing to answer any question you may have.