New York City; Apr. 15, 2005 – People are typically willing to accept a doctorâ€™s advice, but the mental health community has long struggled with the question of what to do when a mentally ill person refuses treatment.
One controversial response is a system that orders some mentally ill people into psychiatric treatment, whether they want it or not. Under "Assisted Outpatient Treatment" (AOT), the doctorsâ€™ orders come by way of a judge.
This month, advocates for the mentally ill are speaking out about Kendraâ€™s Law, New York Stateâ€™s AOT initiative. Supporters of the law, who advocate making it permanent when it expires in June, believe the measure is an effective means of preventing harm to psychiatric patients and others.
But critics say the law violates basic civil liberties and deflects attention from deeper problems plaguing the mental health system. Advocacy groups have contended that the negative side effects of forced treatment include a deepening of the stigma surrounding mental illness, a disproportionate impact on minorities, and the systemâ€™s increasing reliance on coercion at the expense of voluntary treatment methods that are comparably effective.
Kendraâ€™s Law was passed in 1999, partly as a response to the death of Kendra Webdale, a young woman who was pushed into the subway tracks by a schizophrenic man. The state legislature reacted to public fears by mandating psychiatric care for severely mentally ill people who, in the view of a civil court, pose a public safety risk. Currently, 36 other states and the District of Columbia have statutes to order "resistant" mentally ill people into treatment, according to the Bazelon Center for Mental Health Law, a public interest law group specializing in the rights of the mentally ill.
Critics say the law violates basic civil liberties and deflects attention from deeper problems plaguing the mental health system.
Five years on, many still doubt whether Kendraâ€™s Law really benefits either the patient or the public.
At a recent State Assembly hearing on Kendraâ€™s Law, New York City Councilmember Margarita Lopez testified that in light of recent cuts to community-based voluntary treatment programs, it would be misguided for legislators to "put more money in a program that is â€¦ about nothing else than taking away personal freedom."
David Gonzalez, a peer specialist at the Mental Health Empowerment Project, a support group for mental health consumers and survivors, gave a patientâ€™s perspective of forced treatment when voluntary treatment is in short supply, commenting ironically, "[If] I seek treatment voluntarily, Iâ€™m denied services, but if Iâ€™m willing to forfeit all of my constitutional rights, I can get all the treatment I want."
Also in attendance were family members who told stories of their mentally ill childrenâ€™s progress under court-mandated treatment and implored legislators to renew the law to keep their children from relapsing.
J. David Seay*, executive director of the National Alliance for the Mentally Ill of New York State (NAMI-NYS), dismissed the oppositionâ€™s view that "taking someone to court who hasnâ€™t done anything criminal is wrong.â€¦ This law in particular is designed not to punish but to help."
Pointing to glaring racial disparities among court-ordered patients, New York Lawyers for the Public Interest (NYLPI) has charged that Kendraâ€™s Law is both unjust in its statute and biased in its implementation.
Both sides agree that too many people needing mental health services are neglected by the system. The political and scientific rift centers on the question of how best to meet these treatment needs.
From Coercion to Commitment
What troubles many mental health advocates is the lawâ€™s vaguely defined target population: a subgroup of the mentally ill population that supposedly lacks the capacity to engage in a "necessary" course of treatment.
The criteria for AOT eligibility under Kendraâ€™s Law include whether a mentally ill adult "is unlikely to survive safely in the community without supervision"; has "a history of non-adherence with treatment" leading to hospitalization, incarceration, or violence; and poses a risk of future "physical harm" to self or others. Among those who can initiate AOT petitions are relatives, roommates, treatment providers, hospital officials and parole officers.
If a civil judge orders treatment, the AOT program administration develops a treatment plan for the patient and assigns a case manager. AOT program coordinators have the authority to prescribe a particular medication, commit the patient to a certain housing facility or require regular drug testing. A patient who refuses to comply with any part of the plan could be forcibly removed by police to a hospital for a 72-hour "medical observation."
According to data released by the New York State Office of Mental Health (OMH), to date, the law has led to investigations of roughly 11,000 people and produced more than 4,000 court orders.
Supporters focus not on the coercive aspect of the law but on its ability to make limited services more available to those who need them.
The OMHâ€™s five-year report on Kendraâ€™s Law cites improvements in the mental health of AOT patients. According to the reports of case managers, after six months, the percentage of patients surveyed who demonstrated "good adherence to medication" rose from 34 percent to 69 percent. Criteria like maintaining personal hygiene and preparing meals also saw gains.
In the two pages of a 64-page report dedicated to evaluating the opinions of treatment recipients, the OMH stated that of the 76 outpatients interviewed, approximately 60 percent reported that "all things considered, being court-ordered into treatment has been a good thing for them."
Derick Adams, a patient currently on an AOT plan following a hospitalization, acknowledges that his treatment has been helpful, yet he does not believe his case demonstrates the benefits of coercion. Stating his opposition to the renewal of Kendraâ€™s Law before NY State Assembly members, he testified that the court order had little to do with his recovery.
Adams said that as long as he complied with the treatment for his schizoaffective disorder, the court order itself was "like nonexistent" to him. To benefit from intensive treatment, he said, "you donâ€™t need to be coerced."
The reason he objected to AOT, he said, was that the coercive element of his treatment plan, if anything, hindered his progress. He recalled that when he progressing rapidly under treatment, AOT administrators tried to hold him back. He clashed with his treatment providers over whether he was ready to move forward with a training program to be a mental health caseworker. As the expiration of his treatment plan approached, his team of treatment specialists pushed to have it extended against his wishes. With the help of a lawyer, he negotiated to have his sentence reduced to a "voluntary" status, though he said his treatment regimen has basically remained unchanged.
Adams distinguished between the positive aspects of therapy and the court mandate itself, saying that the program operates with "a good purpose. But itâ€™s mental slavery, now."
Weighing the Carrot against the Stick
AOT supporters focus not on the coercive aspect of the law but on its ability to make limited services more available to those who need them.
Riding on Kendraâ€™s Law as it glided through the legislature in 1999 was an unprecedented infusion of funding into the mental health system: $125 million for case management programs to help facilitate AOT, along with $32 million to cover the administration of the law and medications for court-ordered patients.
Even those who criticized Kendraâ€™s Law on principle welcomed the funding influx, especially considering that aside from the AOT initiative, the Governor has allowed billions to be slashed from the mental health budget.
Mary Zdanowicz, executive director of the Treatment Advocacy Center, a national organization that lobbies in favor of AOT legislation, believes that rather than oppressing the mentally ill, Kendraâ€™s Law codifies the "responsibility of the government to care for people that arenâ€™t able to care for themselves."
In 2004, the New York State Court of Appeals ruled that "the state has a compelling interest in preventing emergencies and protecting the public health" through coerced treatment under the law.
Jeff Keller, director of NAMI-NYS, believes AOT strengthens accountability for both service providers and patients. Responding to the argument that AOT undermines civil liberties, Keller asked, "What are you fighting for? â€¦ The right of the individual to recover from the illness, or the [right of the] illness to basically maintain control of that personâ€™s mind and life, and probably eventually kill that person?"
The Ethical Paradox of Forced Care
Critics of AOT have a different view of the role personal rights play in an individualâ€™s recovery.
Civil rights lawyers and mental health advocates across the country argue that Kendraâ€™s Law mistakenly defines an impaired awareness of mental illness as a lack of "legal competence," a relatively conservative standard by which courts determine decision-making capacity.
Coerced treatment to preempt future harm, said Michael Allen, legal counsel at the Bazelon Center, "really amounts to â€˜We know better than you do.â€™ And thatâ€™s not the standard that the Constitution requires for substituted decision-making." He added that Kendraâ€™s Law also endangers confidentiality principles because case managers must report on patient progress to the AOT administration.
"It ought to be a very rare occasion when the power of the state is mobilized to do this to someone," said Allen.
Technically, Kendraâ€™s Law enables the patient "to actively participate in the development of the treatment plan." But Dennis Feld, a lawyer with Mental Hygiene Legal Services, which represents petition subjects in nearly all hearings, said that in his experience, patient input is "minimal," since "for the most part, the planâ€™s already in place" before the patient is consulted.
Another supposedly protective provision of the statute calls for the "least restrictive" means of treatment, opening an opportunity for a willing subject to engage in treatment on a voluntary basis.
But Feld said that often AOT administrators seek court-mandated treatment whenever possible, perhaps viewing it as a form of "risk management." He estimated that in roughly 20 to 30 percent of cases he has observed, people request voluntary instead of mandatory treatment. But according to Feld, local AOT representatives tend to override such pleas and pressure the judge to issue a court order anyway, claiming these individuals "really donâ€™t have â€¦ the judgment or the commitment to carry it through."
Feld also noted that some patients for whom coercion might not be necessary submit to a court order anyway, fearing that AOT is their only means for accessing high-demand outpatient services. In this case, said Feld, all three parties -- the petitioner, the patient and the judge -- often see "a need to fudge it a little bit, because otherwise the person may not get the services they need." And for patients seeking a way out of a psychiatric hospital, agreeing to AOT as a condition of their release may be their only option.
Ron Bassman, a psychologist affiliated with the National Association for Rights Protection and Advocacy, a mental health advocacy group, said the irony of Kendraâ€™s Law is that "you move to the top of the list to get services, but youâ€™re also â€¦ in a kind of prison that you carry around in a can."
Compassion or Criminalization?
Although Kendraâ€™s Law professes to be "compassionate, not punitive," any court-ordered treatment, in Allenâ€™s view, "conveys to the public that these people are damaged, dysfunctional, dangerous â€“ â€˜better that you get them away from you and me.â€™"
In testimony gathered by the Mental Health Empowerment Project, a peer advocacy group, one patient complained of being trapped in the system. Although she claimed she has never been violent, in the AOT bureaucracy, she said, "there is no way to prove that." Reflecting on two years of forced treatment, she added, "The worst thing is not being free, not having the privacy I deserve -- that my future is determined by things I have no control over."
Pointing to glaring racial disparities among court-ordered patients, New York Lawyers for the Public Interest (NYLPI) has charged that Kendraâ€™s Law is both unjust in its statute and biased in its implementation. From 1999 to 2004, Blacks and Hispanics constituted 42 and 21 percent of all court orders respectively, while they make up just 16 percent and 15 percent of the stateâ€™s general population, according to 2000 census data.
NYLPI attorney John Gresham also noted that the mental health system generally reflects this demographic pattern. According to the 2003 statewide mental health patient survey, the adult population identified as "severely and persistently mentally ill" is roughly 24 percent black and 17 percent Hispanic. Gresham thus argues that beyond Kendraâ€™s Law, there seem to be "significant problems with the way the mental health system serves people of color."
For Zdanowicz, of the Treatment Advocacy Center, however, the racial data does not detract from her belief that AOT is improving lives. She argued that if the treatment imposed on people of color is "helping to make these individuals more likely to be able to get and hold a job. â€¦ Why would you complain about offering that to any population?"
Gresham is less optimistic. "Whatever is wrong here," he said, "we shouldnâ€™t be trying to remedy it by disproportionately taking away the freedom of people of color."
Isolating the Variable in Court-ordered Treatment
Numerous studies associate AOT with positive treatment outcomes, but according to the opposition, the research is based on questionable science and does not vindicate the use of force.
In an overview of clinical research on involuntary treatment, the policy think tank the RAND Institute determined that overall, there is still no concrete proof that court orders per se lead to better treatment. Improvements in patients, said researchers, correlate most strongly with "enhanced services and enhanced monitoring" in treatment, not coercion.
Opponents also question the public safety rationale behind AOT, pointing to scientific evidence that the mentally ill are no more likely to be violent than the general population, and to the OMHâ€™s own data, which indicates only 15 percent of surveyed AOT patients were reported to have "physically harmed others" in the three months preceding the order.
Ron Bassman had a first-hand look at the science underlying Kendraâ€™s Law, as a researcher with OMH from 1996 to 2005. When the legislation was still in its infancy, he told The NewStandard, he sought to design a study to evaluate the effects of coerced treatment. But he reports that OMH officials frustrated his effort, demanding final say over how the results would be presented.
To date, Bassman said, the government has "never conducted adequate research â€¦ to look at the efficacy and the value of the law."
Critics say a good system would not require force
Opponents of AOT say that many of the "noncompliance" issues among the mentally ill might be due not to a given patientâ€™s disease but rather to the current systemâ€™s failure to meet peopleâ€™s needs.
Harvey Rosenthal, a former psychiatric patient and executive director of New York Association of Psychiatric Rehabilitation Services, called Kendraâ€™s Law "an unjust and poor replacement for the real answer, which is to improve our services and to make them more responsive and more engaging and more flexible."
The Corporation for Supportive Housing (CSH), an organization that advocates for "assisted living" housing projects across the country, looks for ways to inspire, not coerce, a commitment to treatment. CSH programs combine housing with intensive therapy. The group supports urban housing projects that engage an underserved group similar to one of AOTâ€™s target populations: homeless individuals, largely black and male, who have battled with mental illness, drugs, and incarceration.
Carol Wilkins, director of inter-governmental policy at CSH, said the success of supportive housing shows that the mental health system lacks not coercive authority, but programs "that are really individualized â€¦ and really start by addressing peopleâ€™s basic needs, like a place to live."
One study on specialized housing programs in New York City, comparing the two-year periods before and after placement, found that in the sample populations studied, the average number of days spent in state psychiatric hospitals fell by nearly 60 percent, and the drop in incidences of incarceration was five times greater than the decline in a control group.
People under Kendraâ€™s Law AOT orders also experienced dramatic reductions in homelessness and hospitalization, according to OMH data. But unlike Kendraâ€™s Law, supportive housing programs are offered on a completely voluntary basis, and in New York City, retention rates have been reported at more than 75 percent one year after placement.
Drawing from her experiences with supportive housing clients, Wilkins reflected that coercive mental health programs tend to push people away because they "require people to give up a degree of autonomy, and dignity, and control over their own lives that is not acceptable."
To proponents of Kendraâ€™s Law, what is unacceptable is that the state should be barred from imposing what they view as treatment in order to serve the public interest. Many opponents, meanwhile, are unwilling to accept anything short of the broadest possible protection for self-determination of the individual patient, which they believe is the crux of any effective treatment.
At the State Assembly hearing, recalling her days as a mental health outreach worker, City Councilmember Margarita Lopez reflected, "Help cannot be forced on people. Help has to be accepted."