Mon. Sep 26th, 2022

Paul and Christine, of Montgomery County, know what it feels like to helplessly watch their child’s mental health deteriorate. 

After two hospitalizations in 2020 and 2021 for mental health crises, their 30-year-old son stopped taking his medication and following other aspects of his treatment plan. He rarely leaves his room, doesn’t make eye contact and goes days without bathing, Paul said — all symptoms of the early stages of psychosis.

“We’re still in crisis. Every day is [a] crisis,” said Paul, who has requested his last name be withheld to protect their family’s identity.

Paul and Christine believe their son, who was diagnosed with schizophrenia in 2020 and, later, unspecified psychosis, might be more likely to comply with treatment if it were mandated by a court. But for now, the only thing they can do is watch his condition worsen. 

There’s a three-year-old Pennsylvania law in place that the family thinks could help him, but it has never been used, according to the state Department of Human Services.

In some counties, though, that’s about to change. Five counties across the state — Bucks and Dauphin, along with Carbon, Monroe and Pike, which operate their mental health services together — are gearing up to launch Pennsylvania’s first assisted outpatient treatment pilot programs by 2023, if not sooner, thanks to grant funds provided by the state. 

Assisted Outpatient Treatment, or AOT, in Pennsylvania

In 2018, state lawmakers changed the standards for people to qualify for assisted outpatient treatment, better known as AOT. The law took effect 180 days after it passed.

AOT is a type of involuntary mental health treatment. A person with certain serious mental illnesses — such as schizophrenia or other psychotic disorders — can be court ordered into an outpatient treatment plan. That plan could include medications, therapy and/or psychiatric services, among other treatments and programs. All but three states — Connecticut, Maryland and Massachusetts —offer some sort of involuntary outpatient treatment, according to the Treatment Advocacy Center, a national nonprofit organization that advocates for the court-ordered services.

There are two ways a person can get into an AOT program: upon release from a psychiatric hospital as “step-down” treatment; or, if the person is living in the community, then “any responsible party,” such as a family member, friend or mental health professional, can file an AOT petition with the court.

Supporters of AOT feel it helps people with severe mental illness connect to necessary treatment they would not receive otherwise while opponents worry it violates a patients’ civil rights — that treatment should be a choice, not a mandate.

Court-ordered outpatient treatment existed in Pennsylvania before the changes to the law, but through those changes, the state loosened the definition of who qualifies for it. Under the new AOT standards, people can qualify before they experience a mental health crisis in which they are deemed a danger to themselves or others.

Counties were not required by the law to implement the new AOT standards, though, and since the law took effect, all 67 of Pennsylvania’s counties have consistently opted out. County health officials say they face a host of obstacles, from a lack of funding and staff to unanswered logistical questions.

Counties and mental health advocates are skeptical of AOT

“Insufficient funds.” 

“Providers currently stretched to the limit due to lack of staffing.”

“Mechanical, systematic and fiscal unknowns.”

These are just some of the reasons counties chose to opt out of AOT in 2022, according to paperwork submitted to the state. More than two-thirds of counties wrote that they lack the funding, resources or infrastructure to implement court-ordered AOT. One-third said they already implemented involuntary outpatient treatment using the state’s prior criteria and are satisfied with how the system is working. 

According to the Pennsylvania Department of Human Services [DHS], 28 counties and joint county programs reported providing involuntary outpatient treatment during the fiscal year spanning 2020 and 2021, serving a total of 4,663 people statewide.

In Allegheny County, AOT would require costly software and infrastructure changes, county Department of Human Services spokesperson Mark Bertolet wrote in an email to PublicSource. Bertolet said the county needs more guidance on how AOT should be implemented. The law, he said, doesn’t clearly state who should be responsible for each step of the process or what an AOT treatment timeline should look like — a criticism raised by several counties and mental health advocates.

A screenshot of paperwork Allegheny County submitted to the state explaining why it chose to opt out of implementing AOT in 2022.

Mental health administrators in Bucks and at the Carbon, Monroe and Pike County mental health program said they are cautiously optimistic that their pilot programs could help get people into treatment, but they still have concerns. Pennsylvania’s AOT law is hard to enforce, and expanding court-ordered treatment could further burden the courts and counties’ already overloaded mental health services, which are experiencing staffing shortages and long wait times for services. 

According to Betsy Johnson, implementation specialist at the Treatment Advocacy Center, AOT would not increase the overall number of people trying to access services. 

“These are not new people. These are the same people the system has been serving or should have been serving but hasn’t been,” she said, noting that many mentally ill people are in correctional facilities or psychiatric hospitals but could be getting treatment in the community instead.

The most pressing concern for county leaders, though, is the absence of sustained funding. Although the counties received grants from the state Department of Human Services to launch the pilots, the grants cover only the two-year launch period. AOT is otherwise unfunded by the state. It’s unclear how much it will cost counties to provide AOT because it includes a multitude of factors from treatments for illnesses to administrative and court costs. Some studies show the program ultimately can save counties money, however, by diverting people from costly hospitalizations and jail stays. 

An excerpt of a letter from Washington County to the Pennsylvania Department of Human Services explaining why it chose to opt out of implementing AOT in 2022, including concerns about its effectiveness and impact on people’s civil rights.

While AOT programs vary widely across the country, in some other states, state legislatures have footed the bill. New York State budgeted almost $25 million for its AOT law in 2018, according to The New York Times. (And one New York lawmaker said it still wasn’t enough.) 

“You cannot enhance services in the community on funding that is gone in two years,” said Donna Duffy Bell, Bucks County’s mental health administrator. “It needs to be a sustainable source of funding, and funding that can be counted on to be allocated every year as mental health-based dollars.“

Bucks County expects roughly 35 residents will participate in its AOT pilot between July 2022 and July 2023, while Dauphin anticipates 20 participants and the Carbon, Monroe and Pike program expects about 10 participants, according to the state DHS.

Margie, a Bucks County resident who asked that her last name be withheld for privacy, struggled for years to get help for her son who has schizophrenia. Bucks County had the necessary mental health services, she said — but because of her son’s illness, he didn’t recognize he was sick and was unable to take advantage of them. While Margie was “thrilled” when Pennsylvania passed its new AOT law, she was devastated when no counties opted in. She’s happy the county is finally giving AOT a try and hopes the programs will continue past the one-year pilot.

“Any county that doesn’t at least try a pilot is failing,” she said.

County mental health administrators say the pilot programs are only a test run, and they can still opt out of providing AOT in the future if the programs are unsuccessful or unsustainable.

Kathy Quick, executive director of Pennsylvania Mental Health Consumers’ Association, said instead of implementing AOT, Pennsylvania should focus on expanding other aspects of mental health treatment, such as offering more peer support for people who are involved in the criminal justice system. And counties that do launch AOT programs, she said, should increase the use of the state’s mental health directive laws, which allow people to make decisions about their treatment in advance while they’re well. 

“Instead of forcing people into treatment, we should offer effective treatment,” she said. 

For some families, AOT is the last resort

While counties are most focused on the funding and logistics of AOT, some mental health advocates believe these concerns miss the big picture: If the mental health services in place were adequately funded and accessible, several told PublicSource, there wouldn’t be a need for AOT.

“[The law] established an unusable AOT procedure that will waste resources and funding that could be put to better use right now,” Christine Michaels, CEO of the National Alliance on Mental Illness Keystone Pennsylvania, wrote in an email to PublicSource. 

Michaels said Pennsylvania is experiencing a dire mental health workforce shortage and lengthy wait times for services. According to a report by Pennsylvania’s Rehabilitation & Community Providers Association, the number of mental health and intellectual disability professionals working in the state declined by nearly 10% between 2019 and 2021, largely due to burnout and “unsatisfactory working conditions.”

“Our mental system is in crisis right now.”

“Our mental system is in crisis right now,” Michaels wrote. 

For Paul and Christine’s son, AOT is not currently and will continue not to be an option for their son. AOT isn’t available in Montgomery County and the county is not participating in the upcoming pilot programs. For them, an involuntary “302” hospitalization — so named for a section of the state’s Mental Health Procedures Act — is the only option, which comes when their son is most in crisis.

Johnson sees court-ordered AOT as an alternative for families like Paul and Christine, and said she and others with the Treatment Advocacy Center are thrilled that a few counties in Pennsylvania are finally giving it a chance.

“For a very small number of very ill people, it really is the best opportunity they have to live a quality life outside of, you know, outside of being caught up in this revolving door” of hospitalization and incarceration, Johnson said. “In many respects, for some people, it’s really the only way,” she said, because many people with severe mental illness aren’t able to understand that they are ill and often object to treatment. 

According to a 2018 congressional report by the federal Substance Abuse and Mental Health Services Administration, 92% of AOT participants surveyed in 12 states and Puerto Rico said they were satisfied with the services they received, although the report did not indicate how many people were included in the survey. 

Privacy and parity

But some mental health advocacy organizations and consumer groups remain opposed to AOT, fearing it could violate patients’ civil rights by forcing them into treatment and further burden mental health services that are already stretched thin.

“I wouldn’t imagine that we would live in a society where I’d be forced to treat my heart condition or my diabetes or any other physical condition,” Quick said. “But here we are, forcing people to treat their mental illness in a way that they might not agree with.”

Johnson of the Treatment Advocacy Center said that’s a false comparison because those medical conditions do not alter a person’s state of mind the way that severe mental illness can. 

“To argue that a person who suffers from delusions or hallucinations and is caught in the revolving door of hospitalizations and incarcerations has carefully weighed the risks and benefits of that lifestyle and prefers it to living at liberty in their community is nonsensical,” she wrote in an email to PublicSource.  

“Your heart breaks for the person and the family member, because most likely, that path is going to continue. And then the person will eventually end up hospitalized. So if we could stop that ahead of time, that would be great.” 

The Mental Health Parity Act of 1996 aims to put mental health care on the same level of importance as physical health. The existence of AOT inherently makes mental health a priority, but Johnson said it is not a tool to improve parity. “Passing quality AOT laws is not an attempt to improve mental health parity,” she said. “In fact, our country could have the best mental healthcare system in the world, and people with severe mental illness who lack insight into their illness would still not take advantage of those services.”

The AOIT process can begin after being released from inpatient treatment or at the request of a family member or mental health professional. A court hearing is held and a mental health evaluation ordered to see if the person qualifies for AOT. To qualify, they must meet several criteria: they are unlikely to survive safely in the community without supervision; they have a history of lack of voluntary adherence to mental health treatment and have either been involuntarily hospitalized in the past year or have exhibited or threatened serious violent behavior in the past four years; they are unlikely to voluntarily participate in treatment because of their mental illness; and they are in need of treatment to prevent deterioration that would likely result in substantial risk of serious harm to themselves or others.

Supporters of AOT say the point is to get a person into treatment before they are in crisis.

But until the person is in crisis and qualifies for a 302, loved ones have no recourse, said Tina Clymer, administrator at Carbon-Monroe-Pike Mental Health and Developmental Services. Her office often receives calls from families whose loved ones are struggling with severe mental illness but do not meet the 302 criteria looking for help. 

“Your heart breaks for the person and the family member, because most likely, that path is going to continue. And then the person will eventually end up hospitalized,” Clymer said. “So if we could stop that ahead of time, that would be great.” 

She hopes to launch the counties’ AOT pilot by March 2023.

Enforcement and motivation

While AOT can help get a person into treatment, it’s difficult to enforce. Because an AOT order is a civil order, and not criminal, a person can’t be arrested or jailed if they don’t comply. 

“In fact, the goal of AOT is to keep individuals with [severe mental illness] out of the criminal justice system, so putting them in jail would be counterproductive,” Johnson wrote in an email to PublicSource.

If a person doesn’t follow through with their AOT treatment plan, they can have their treatment plan reevaluated; have their AOT order extended; or undergo another mental health evaluation and be involuntarily hospitalized if they meet the 302 criteria. If none of those measures works, AOT skeptics said there isn’t much more that can be done. 

Yet for many people, AOT advocates said, their treatment team can help motivate them to engage in treatment without resorting to enforcement measures.

That’s exactly what happened to Bradley Tarr, an AOT graduate from Lexington, Ohio.

Tarr said he went through 14 months of mental health probation court after punching a wall in a homeless shelter. Tarr found the probation court to be punitive and unsupportive. He was required to go to anger management classes and get drug tested miles away from his home, despite not having a car. If he missed an appointment, he said, he was threatened with jail time. 

Compared to probation court, AOT was “like night and day,” Tarr said. After being hospitalized for intense delusions, a symptom of his schizoaffective disorder, he began AOT in 2019. He described the program as “holistic” and “therapeutic.” He was connected with a psychiatrist who reviewed his entire mental health history, and his treatment team helped him get to and from his appointments.

“It was one of the best things that’s ever happened in my entire life,” Tarr said of the program, adding that he was always treated with dignity. 

“If they take what they have done in Richland County, Ohio and that’s what they implement in other counties, I think that it will be nothing but good for people.” 

Juliette Rihl is a freelance reporter based in Phoenix. She can be reached at juliette@publicsource.org or on Twitter at @julietterihl.

This story was fact-checked by Punya Bhasin.

PublicSource is a part of the Mental Health Parity Collaborative, a group of newsrooms covering challenges and solutions to accessing mental health care in the United States. The partners on this project include the Carter Center, the Center for Public Integrity and newsrooms in Arizona, California, Georgia, Illinois, Pennsylvania and Texas.

The Jewish Healthcare Foundation has contributed funding to PublicSource’s healthcare reporting.

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