Summary: Evidence shows Assisted Outpatient Treatment (AOT) improves lives. Viewed through the objective lens of science, AOT clearly benefits people with severe mental illnesses who are unable to access treatment voluntarily.
Mary T. Zdanowicz, J.D
Assembly Standing Committee on Mental Health, Mental Retardation and Developmental Disabilities
April 8, 2005
Chairman Rivera and members of the Committee on Mental Health, Mental Retardation and Developmental Disabilities. I am pleased to have the opportunity to testify in support of a permanent Kendra’s Law, New York’s Assisted Outpatient Treatment (AOT) program. My name is Mary Zdanowicz and I am the Executive Director of the Treatment Advocacy Center in Arlington, Virginia. Our focus and expertise is civil commitment laws.
As we will see today, it is obvious, and understandable, that the subject of assisted outpatient treatment can evoke strong emotions. Some people’s opinions of AOT are informed by ideological views, and values concerning personal autonomy and state control. Others are passionate about AOT because they believe it represents an individual’s right to be free from psychosis and the state’s obligation to care for those who are unable to care for themselves. Tensions based on emotion and ideology cannot be resolved easily, and as you well know, often lead to endless debate.
This is true of many public policy issues. When these tensions occur, the prudent course is to look to science and data, because differences based on emotion are difficult to overcome.
Science is the realm where I am most comfortable in this debate. I spent the first half of my career working in laboratories. I understand study design and data analysis. In my current position I have the responsibility to carefully study the existing data on assisted outpatient commitment. I have read all the studies multiple times, and have spoken with many of the study authors. The cumulative result of the many studies on this issue is that AOT clearly and empirically benefits people with severe mental illnesses who are unable to access treatment voluntarily.
Let me back up for just a moment. Two types of studies are necessary to evaluate any kind of treatment model: Randomized controlled studies, which study efficacy, and naturalistic studies, which study effectiveness.[i] These two kinds of studies serve different purposes and answer different research questions. Randomized controlled studies reduce bias so that one can determine whether the treatment model being studied is causing the observed effect. Naturalistic studies examine whether a particular treatment model will be successful in clinical practice.
In 1999, the New York Legislature wisely suggested that a naturalistic study be conducted for the first five years of the implementation of Kendra’s Law and that the data be presented to the Legislature.[ii] The results were published last month in the Final Report on Kendra’s Law and demonstrate that assisted outpatient treatment is indeed successful in clinical practice.[iii] What is striking is how closely the results parallel those of the most comprehensive randomized controlled study of AOT known as the “Duke Study.”[iv]
AOT addresses a specific problem
Kendra’s Law recognizes that there are a myriad of reasons people do not get the treatment that they need. AOT, as the core component of Kendra’s Law, was designed to address one specific problem - when a severe mental illness causes someone to “reject outpatient commitment offered to them on a voluntary basis.”[v]
The most common reason that people with severe mental illnesses are not being treated is that they don’t believe that they need treatment for a mental illness.[vi] This lack of insight, a neurological deficit known as “anosognosia,” impairs a person’s ability to recognize that his or her symptoms are caused by a brain disorder.[vii] A severe lack of insight into illness, whether caused by schizophrenia or other impairment, can “seriously interfere with [a patient’s] ability to weigh meaningfully the consequences of various treatment options.”[viii] Simply put, they do not realize they are ill and will not seek or accept services voluntarily. For this population, it doesn’t matter how good the services are because they don’t think they need them. Without AOT, a person with anosognosia may never realize the benefit of treatment.
The court order makes a difference
Kendra’s Law requires, in part, that a person be “unlikely to voluntarily participate in the recommended treatment.”[ix] Thus, individuals in the program are people who require a court order to ensure their participation. In practice, individuals referred for AOT are first offered the opportunity to accept services voluntarily – an offer that some accept.
North Carolina law has a similar eligibility provision that requires that the person be unable to “seek voluntarily or comply with recommended treatment.”[x] In the Duke study, randomization was used in assigning people to services alone for the control group and services and a court order for the experimental group so that observable differences could be attributed to the court order. One of the Duke study researchers explained that the “study tested the net effect of outpatient commitment as well as the complementary role of intensive services delivery. We found that subjects who were high-intensity service users without outpatient commitment had no better outcomes than their counterparts who received infrequent services or no services at all.“[xi]
Kendra’s Law required that the Final Report assess the use of existing services for AOT. It is very important to note that the majority of AOT participants were already receiving services (like case management, medication monitoring, or therapy) before they received a court order. A majority also had poor medication adherence prior to the court order, which may explain why so many exhibited poor engagement in the services. The number of individuals who exhibited good treatment adherence increased 103 percent with AOT. Engagement in services also increased significantly. Clearly the court order made a significant difference.
Kendra’s Law is doing what it was meant to do
The purpose of Kendra’s Law, as reflected in the legislative findings, was to prevent consequences like hospitalization, incarceration, homelessness, and harmful behavior (like suicide and violence) that occur when people with severe mental illnesses relapse and refuse needed treatment.[xii] The Final Report evaluated the incidence of these and other quality of life measures for patients before and during assisted outpatient treatment as required by Kendra’s Law and found improvements in all areas.
AOT recipients experienced 77 percent fewer hospitalizations. The New York experience in reducing hospitalizations was validated by the Duke study that reported reductions in hospitalization between 57 and 72 percent.[xiii]
AOT reduces the risk of arrest and incarceration. The results from efficacy (Duke) and effectiveness (New York) studies are similar: 88 percent fewer were arrested in New York and Duke reported a 74 percent reduction in arrests.[xiv] Similarly, episodes of homelessness were reduced for participants in Kendra’s Law AOT and the Duke study.[xv]
Although not the only goal of Kendra’s Law, an important goal is to reduce the risk of harmful behavior that increases when people with severe mental illnesses are not getting the treatment that they need. Significantly fewer AOT recipients under Kendra’s Law harmed themselves or engaged in suicide attempts. Fewer attempted or actually did physically harm others. The Duke study also found reductions in violence: Long-term AOT combined with routine outpatient services reduced the predicted probability of violence by 50 percent.[xvi] Although not measured in New York, Duke found that AOT reduced victimization, which is particularly significant because people with severe mental illnesses are more likely to be victimized.[xvii]
Kendra’s Law is compassionate and restores dignity
The preamble to Kendra’s Law predicted that “assisted outpatient treatment as provided in this act is compassionate, not punitive, will restore patients` dignity, and will enable mentally ill persons to lead more productive and satisfying lives.” The data confirm that this prediction is true, as do the words of the participants themselves. Researchers conducted face-to-face interviews with AOT recipients to assess their opinions about the program. They overwhelmingly endorsed the effect of the program on their lives. After receiving treatment,
75 percent reported that AOT helped them gain control over their lives;
81 percent said that AOT helped them to get and stay well; and
90 percent said AOT made them more likely to keep appointments and take medication.
Additionally, AOT had a positive effect on the therapeutic alliance: 87 percent of those interviewed said they were confident in their case manager’s ability to help them – and 88 percent said that they and their case manager agreed on what is important for them to work on.
New York participants saw statistically significant reductions in difficulties in 15 out of 16 measured areas of social, interpersonal, and family functioning, like asking for help when needed and effectively handling conflict, and in task performances, like understanding and remembering instructions. The Duke researchers also assessed the impact of AOT on the quality of life of people with severe mental illnesses, covering a range of areas including social relationships, daily activities, finances, residential living situation, and global life satisfaction. They found that subjects who underwent sustained periods of AOT had measurably greater subjective quality of life at the end of the study year.[xviii]
The weight of empirical evidence shows that AOT improves lives. Viewed through the objective lens of science, AOT clearly benefits people with severe mental illnesses who are unable to access treatment voluntarily. I urge you to be objective and make Kendra’s Law permanent.
[i] Leichsenring, F. (2004) Randomized controlled versus naturalistic studies: A new research agenda. Bulletin of the Messinger Clinic 68,137-151.
[ii] 1999 N.Y. Laws 408 § 16. Report and evaluation. The commissioner of mental health shall issue an interim report on or before January 1, 2003 and a final report on or before March 1, 2005. Such reports shall be submitted to the governor and the chairpersons of the senate and assembly mental health committees, and shall include information concerning the characteristics and demographics of assisted outpatients; the incidence of homelessness, hospitalization and incarceration of patients before assisted outpatient treatment to the extent available, and information on such incidence during assisted outpatient treatment; outcomes of judicial proceedings, including the percentage of petitions for assisted outpatient treatment that are granted by the court; referral outcomes, including the time frames for service delivery; reasons for closed cases; utilization of existing and new services; and recommendations for changes in statute.
[iii] New York State Office of Mental Health. (2005, March). Kendra’s Law: Final report on the status of assisted outpatient treatment.
[iv] Swartz, M.S., Swanson, J.W., Hiday, V.A., Wagner, H.R., Burns, B.J., Borum, R. (2001). A randomized controlled trial of outpatient commitment in North Carolina. Psychiatric Services, 52, 325 – 329.
[v] 1999 N.Y. Laws 408 §2. Legislative findings. The legislature finds that there are mentally ill persons who are capable of living in the community with the help of family, friends and mental health professionals, but who, with-
out routine care and treatment, may relapse and become violent or suicidal, or require hospitalization. The legislature further finds that there are mentally ill persons who can function well and safely in the community with supervision and treatment, but who without such assistance, will relapse and require long periods of hospitalization.
The legislature further finds that some mentally ill persons, because of their illness, have great difficulty taking responsibility for their own care, and often reject the outpatient treatment offered to them on a voluntary basis. Family members and caregivers often must stand by helplessly and watch their loved ones and patients decompensate. Effective mechanisms for accomplishing these ends include: the establishment of assisted outpatient treatment as a mode of treatment; improved coordination of care for mentally ill persons living in the community; the expansion of the use of conditional release in psychiatric hospitals; and the improved dissemination of information between and among mental health providers and general hospital emergency rooms.
The legislature further finds that if such court-ordered treatment is to achieve its goals, it must be linked to a system of comprehensive care, in which state and local authorities work together to ensure that outpatients receive case management and have access to treatment services. The legislature therefore finds that assisted outpatient treatment as provided in this act is compassionate, not punitive, will restore patients` dignity, and will enable mentally ill persons to lead more productive and satisfying lives.
The legislature further finds that many mentally ill persons are more likely to enjoy recovery from non-dangerous, temporary episodes of mental illness when they are engaged in planning the nature of the medications, programs or treatments for such episodes with assistance and support from family, friends and mental health professionals. A health care proxy executed pursuant to article 29-C of the public health law provides mentally ill persons with a means to accept individual responsibility for their own continuing mental health care by providing advance directives concerning their wishes as to medications, programs or treatments that they feel are appropriate when they are temporarily unable to make mental health care decisions. The legislature therefore finds that the voluntary use of such proxies should be encouraged so asto minimize the need for involuntary mental health treatment.
[vi] Kessler, R.C., Berglund, P.A., Bruce, M.L., Koch, J.R., Laska, E.M., Leaf, P.J., et al. (2001). The prevalence and correlates of untreated serious mental illness. Health Services Research, 36, 987-1007.
[vii] Amador, X.F., Flaum, M., Andreason, N.C., Strauss, D.H., Yale, S.A., Clark, S.C., et al. (1994). Awareness of illness in schizophrenia and schizoaffective and mood disorders, Archives Gen. Psychiatry, 51, 826-36; Fennig, S., Everett, E., Bromet, E.J., Jandorf, L., Fenning, S.R., Tanenberg-Karant, et al., (1996). Insight in first-admission psychotic patients. Schizophrenia Research, 22, 257-63.
[viii] Grisso, T., & Appelbaum, P.S. (1998). Assessing competence to consent to treatment: A guide for physicians and other health professionals. New York: Oxford University Press.
[ix] N.Y. MENTAL HYG. LAW § 9.60(C)(5)
[x] N.C. GEN. STAT. § 263. (d)(1)d.
[xi] Swanson, Jeff. (2002, May 4). Whose Mind Is It Anyway? Los Angeles Times
[xii] See note 5.
[xiii] Swartz, M.S., Swanson, J.W., Wagner, H.R., Burns, B.J., Hiday, V.A., Borum, R. (1999). Can involuntary outpatient commitment reduce hospital recidivism? American Journal of Psychiatry, 156, 1968-75.
[xiv] Swanson, J.W., Borum, R., Swartz, M.S., Hiday, V.A., Wagner, H.R., Burns, B.J. (2001). Can involuntary outpatient commitment reduce arrests among persons with severe mental illness? (2001). Criminal Justice and Behavior, 28, 156-89.
[xv] Compton, S.N., Swanson, J.W., Wagner, H.R., Swartz, M.S., Burns, B.J., Elbogen, E.B. (2003) Involuntary outpatient commitment and homelsseness in persons with severe mental illness. Mental Health Services Research, 5, 27-38.
[xvi] Swanson, J.W., Borum, R., Swartz, M.S., Hiday, V.A., Wagner, H.R., Burns, B.J. (2000). Involuntary outpatient commitment and reduction of violent behaviour in persons with severe mental illness. Brit. J. Psychiatry, 176, 324-31.
[xvii] Hiday, V.A., Swartz, M.S., Swanson, J.W., Borum, R.,Wagner, H.R. (2002). Impact of outpatient commitment on victimization of people with severe mental illness. American Journal of Psychiatry, 159, 1403-11.
[xviii] Swanson, J.W., Swartz, M.S., Elbogen. E.B., Wagner, H.R., Burns, B.J. (2003). Effects of involuntary outpatient commitment on subjective quality of life in persons with severe mental illness. Behavioral Science and the Law, 21, 473-91.
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