I’m talking with Lynn Nanos, a Massachusetts social worker specialized in evaluating serious mental illness. Lynn has worked in emergency mental health care for over ten years, and recently she wrote Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry. We’ve previously talked about the basic problems with getting help for a mentally ill loved one, the weak points of the MacArthur Foundation study that claims there is no link to violence, and the effect of pervasive hopelessness in psychiatric treatment culture. In October 2019, Lynn attended the Treatment Advocacy Center’s (TAC) conference on Assisted Outpatient Treatment (AOT) in Columbus, Ohio. I really wanted to be there, but I wasn’t able to. So I have questions for Lynn!
Ruth: First, for readers who aren’t familiar with AOT, let’s try to sum up its “big idea” in 25 words or less.
Lynn: AOT is mandated, usually through court-order, outpatient treatment for people with serious mental illness (really brain disease) who have a history of medication noncompliance, as a condition of their remaining outside of inpatient units. This can include orders to adhere to prescribed medication, attend outpatient appointments, or both.
Lynn: The passing of the 21st Century Cures Act helped to normalize and expand the use of AOT, making it no longer as controversial. The Substance Abuse and Mental Health Services Administration (SAMHSA) awarded grants to various states (including Nevada) for them to launch AOT programs. But there are many limitations to AOT and a tremendous amount of work is needed to strengthen it. For instance, AOT orders do not transfer from state to state. So if a recipient of AOT in Maine travels to New York, no one in New York will be able to invoke AOT to intervene in a crisis.
Ruth: Even though New York has an AOT program! That’s an interesting and troubling loophole. What are some other ways the states vary in the way they conduct AOT?
Lynn: This is difficult to determine because I’m not an expert on every state, though Wisconsin and Michigan were the only states that received A’s in the Treatment Advocacy Center’s Grading of the States. Some states, like Nevada, allow for AOT to get automatically invoked upon discharge from inpatient without requiring application and additional evaluation. Judge Elinore Marsh Stormer of Ohio was a panelist at the conference, and she talked about what criteria qualify mentally ill people for AOT in her state. She listed anyone who’s been involuntarily civilly committed to inpatient with a serious mental illness, such as schizophrenia, schizoaffective disorder, bipolar disorder, severe depression, or attempted suicide. Someone with a primary personality disorder (e.g., borderline personality disorder) does not qualify.
Ruth: Pennsylvania now actually has two forms of court-ordered treatment, with AOT being the new one. The old one, Involuntary Outpatient Treatment (IOT), has such a high standard of danger to meet that few ever use it, so the new AOT is designed to be used more. But here’s the biggest difference: to make up for its being easier to qualify for, the law mandates that the county has to be prepared to give real assistance, putting the “A” in AOT. The court order has to provide an individual treatment plan, listing providers and services, whereas IOT does not. But since nobody has used it yet, we don’t know anything about how AOT will be carried out. I envy states like Ohio and Nevada that already have working systems.
Lynn: I do too!
Ruth: Who can petition the court in request of AOT? Families, police, doctors?
Lynn: The states vary so widely in this. For instance, in New Jersey, an inpatient psychiatric team, two independent psychiatrists, or a hospital emergency department are allowed to submit the affidavit to the court, but family is not allowed to do this. Treatment providers are expected to write the clinical treatment plans, rather than the courts, and this is what goes in the affidavit.
Ruth: It looks like in Pennsylvania, our new AOT law would allow “any responsible party” to file a form in court (with two doctors’ signatures). There are three states that don’t even have a hard-to-use AOT version — they have none at all. You live in one of those states. Why does Massachusetts resist the change that’s happening in so many other states?
Lynn: I learned from the book, Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill, that a couple of legal cases were going on at the same time, which resulted in Massachusetts pioneering the notion that patients have the right to refuse treatment, even when they’re dangerous. Legally, Massachusetts has one of the most restrictive inpatient criteria standards in the nation.
Ruth: “Restrictive” meaning it’s hard to commit someone to the hospital?
Lynn: Right. And the anti-psychiatry movement is highly pronounced here in Massachusetts, with many of its leaders and followers of the late Thomas Szasz and Peter Breggin, living here. The National Empowerment Center, a strong opponent of AOT, is based in Massachusetts. Anyone who questions the validity of “mental” illness — really brain disease — doesn’t seem to understand that anosognosia is the main reason that involuntary treatment is needed.
Ruth: You’ve talked to lots of opponents of AOT in Massachusetts. What did you learn?
Lynn: I repeatedly found people living with untreated psychosis that seemed to impair their logic. Many had been mistreated by psychiatric professionals and were inappropriately generalizing to all psychiatric professionals. Some were very high functioning, even with untreated psychosis, and they were inappropriately generalizing to the rest of the population with psychosis. That is, they didn’t recognize that many people with psychosis cannot function without medication.
Ruth: There’s a lot of fear that AOT will be too intrusive, I guess. What are some typical ways AOT recipients’ progress is monitored?
Lynn: In Ohio, a probate court monitor works closely with treatment providers to assess progress. The monitor attends court hearings and treatment team meetings. The monitor acts as a liaison between the court and the treatment team, and submits reports of progress to the court, as reported by the treatment team, thus the monitor doesn’t actually provide treatment.
Ruth: You gave me a great tip to watch TAC’s interview videos, in which I learned that in Nevada, they have a psychiatrist directly involved in monitoring patients. She can make snap judgments about what to allow, based on how they’re doing. This allows the court-ordered oversight to still be individual and flexible.
So does AOT work in the ways we care about most? Does it make society safer?
Lynn: According to TAC, implementation of AOT results in a 44 percent decrease in harmful behaviors, and a two-thirds reduction in the risk of getting arrested in a given month. TAC also reports AOT recipients are four times less likely to perpetrate serious violence against others than if they had not been receiving AOT, and they are half as likely to be victimized.
Ruth: One of the most surprising things about New York’s experience with AOT has been that most court orders to stay on treatment can be enforced just by being there. I had always assumed that if someone went off medication while on a court order, the police would be notified to go pick them up, but that’s not accurate at all. How does this work?
Lynn: Many AOT programs are hard to enforce, which speaks to how much more work we have before us to maximize the method’s potential. For instance, treatment providers, such as program coordinators, can authorize involuntary transfers to hospitals due to noncompliance with AOT orders, but hospital emergency physicians have the power to override these and discharge patients to the streets or home, rather than to inpatient units. That has to be extremely frustrating for the AOT team.
Ruth: At the same time, many patients obey a court order just because it is there. They call this the “Black Robe Effect.” There’s some percentage of people who just give up and say “okay, I’ll do it.” I guess this might not work for the really hard core of noncompliant patients, but maybe only an inpatient stay will work for them.
Lynn: AOT is not a quick fix, and nor will it help everyone, and it can’t always be implemented. Sometimes, even when it’s needed, the court can dismiss the order. For example, in New Jersey, if AOT recipients go missing and no family or treatment team member can locate them, the court can withdraw the order. A court order for AOT can be also withdrawn if AOT has been tried, but no clinical progress has been made.
Ruth: What did you learn about what makes an AOT program more likely to succeed? “Success,” of course, means a maximum number of patients stay on medication and out of hospital.
Lynn: Brian Stettin, policy director of the Treatment Advocacy Center, said that first, communication between courts and the interdisciplinary treatment team must be clear. Once the court orders AOT, treatment should be evidence-based so time and resources are not wasted. There should be a constant evaluation of progress: when the order expires, should it be renewed? Or will voluntary services be enough? There also needs to be some plan for what to do if the patient still doesn’t comply. Ultimately, the leverage is that if this doesn’t work, the person will have to go back into the hospital.
Ruth: I liked the Nevada psychiatrist’s approach; she had flexibility to tailor plans and even make deals, like “if you can’t get to all three appointments this week, what if you skip seeing me next and go to this other important one? Can you do that?” It seems realistic, which is always a key to success with a difficult or irregular population.
States often fear that a program to oversee and enforce AOT will be expensive, and of course, it does require them to hire nurses and social workers to keep track. Why should a state or county not be afraid of this expense?
Lynn: Florida demonstrated a decrease in total cost to the state. They found the number of arrests declined with AOT, which inevitably equated to a decrease in the number of incarcerations. States and counties that hesitate to adopt AOT might not realize that sick people who frequently utilize hospitals and jails or prisons are costing the state more than if AOT were invoked, because AOT has proven to reduce the admissions to these. AOT programs use community treatment teams and programs that had previously existed, so most of it doesn’t need to be built from scratch with brand new budget items. They were already paid for and established through the state and its vendors. Such teams involve case management, nursing, psychopharmacological, vocational, and other clinical services to the client.
The enormous cost-saving benefits of AOT far outweigh any extra cost (e.g., to petition the court). For instance, in Texas, prior to AOT, 67,000 inpatient days were used. The number of inpatient days got reduced by 80 percent after use of AOT. According to Treatment Advocacy Center, use of AOT resulted in 50 percent cost savings in New York, 40 percent cost savings in North Carolina, and 40 percent cost savings in Summit County, Ohio, and $1.81 was saved for every dollar spent in Nevada County, California.
Ruth: Wow. That’s significant savings. What did you learn at the conference about how patients feel about AOT? I would imagine that since they’re being told to do something against their wishes, they’d be pretty mad about it at first. How does that play out?
Lynn: This was a really interesting part, because one panelist, Eric Smith, was an AOT patient. I sensed the collective jaw-dropping awe among the audience as Eric said, “AOT saved my life.” He encountered his first inpatient psychiatric hospitalization in 2009. Although he was never violent, Eric falsely believed that he had incriminating information against the President of the United States and Federal Bureau of Investigation, and Secret Service for the President had to be made aware of the risk of danger. Eric even believed the President had to get killed for national security.
Ruth: That’s a potentially life-ruining delusion, even if he wasn’t violent. I’ve heard of other similar delusions that landed people in jail, since federal law takes threats so seriously. How did he get off the one-way road to disaster?
Lynn: Like so many people with a new diagnosis of bipolar with psychotic features, Eric tried a variety of medications with so-so results. But in 2012, clozapine was prescribed in the hospital and helped Eric to an extent where he was safely discharged to outpatient services. Because he had suffered from lack of awareness of one’s own illness — anosognosia — he was at high risk for quickly becoming noncompliant. Eric told the audience that under AOT, he participated in weekly hearings involving a judge, an attorney, and a social worker. It kept him stable long enough to reform his view of reality and how to live, and he’s doing great now.
Ruth: What advice would you give to anyone getting ready to testify in favor of AOT with their local governments? I’m gearing up to make the case to Allegheny County.
Lynn: “Money talks,” and legislators tend to get motivated by the vast cost-saving benefits that invoking AOT produces. AOT is less costly for states and counties than incarcerations and inpatient readmissions, considering that AOT prevents both. Legislators also want to prevent a repetition of unnecessary deaths, such as murders, so providing tragic stories can help motivate them to do the right thing. [Ruth’s story can be found here and here.] Hospital emergency room boarding has been a contentious issue, thus emphasizing that AOT would reduce this would motivate legislators.
Ruth: That sounds like where we’re at in Pennsylvania. The provision that allowed the law to pass was that counties had to opt in (the way it’s done in California). It took the state almost a year to write a regulatory “guidance” paper for AOT, so now counties are digesting this. Nobody has yet opted in, which makes the law null. Many family members like me are thinking about how to persuade their counties to develop programs, and money has to be the key. Probably some counties aren’t as aware of the cost of untreated brain disorder, but I think the big urban counties are — and that’s what I live in. I’ve set up a dedicated email account to talk to others who feel as I do: email@example.com.
Thank you, Lynn, for sharing what you learned! I hope readers will check out your book, Breakdown. It’s a detailed report from the front lines.