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Pending federal legislation calls for investment in assisted outpatient treatment for people with severe psychiatric problems. Local advocates say there’s a better way.
By Taylor Sisk
“Agency” is a word used often by mental health care advocates in reference to the right of individuals to make their own decisions regarding treatment.
“The full humanity of a person is devalued when he has no right to agency,” said Laurie Coker, director of the North Carolina Consumer Advocacy, Networking, and Support Organization, a group that advocates for people with mental health issues.
Further, Coker and others argue, denying a person the right to choose a path to recovery diminishes the chances that recovery will be achieved.
People with mental health issues think of recovery as reaching a place in their lives where they’re making their own decisions and participating in society successfully. Coercion is considered an obstruction in that journey, and advocates like Coker say it should be employed only in extreme cases.
But the question of agency – and it’s relationship to recovery – is at the core of a debate that’s been waging around alternative pieces of federal mental health legislation now under discussion. A bill in Congress introduced by Rep. Tim Murphy of Pennsylvania and co-sponsored by North Carolina Rep. Renee Ellmers (R-2nd District) is titled the “Helping Families in Mental Health Crises Act” and has created controversy in mental health advocacy circles.
The bill is focused on measures designed to address the needs of those living with the most severe and persistent mental illnesses, and grows out of concern about acts of violence commited by people with severe mental illnesses. It includes a provision regarding court-ordered “assisted outpatient treatment.”
Assisted outpatient treatment, or AOT, allows magistrates or other court officials to order outpatient services as an alternative to institutionalization if they believe the person’s mental illness is leading to repeated arrest or hospitalization or even violence.
A second bill has also been introduced in Congress; it was penned by Rep. Ron Barber, a Democratic from Arizona who was hurt in the mass shooting that also injured Rep. Gabby Giffords. His bill endorses more community-based, “person-centered” services, including early intervention, outreach, rehabilitation and peer support, with no provision for court-ordered assisted outpatient treatment.
The debate generated by the two bills over assisted outpatient treatment is largely about agency.
Same results without force?
The Murphy bill proposes providing grants at the local level to fund AOT pilot programs in states.
Marvin Swartz, head of the Duke University School of Medicine’s Social and Community Psychiatry Division, was part of a team of researchers that studied AOT in New York state. They found that when adequately underpinned with a variety of community-based services and supports, AOT can be used effectively.
Coker counters that the same results can be achieved by simply providing quality outpatient care for people when they need it. If adequate services are available, she says, there’s no need to force treatment.
Where Swartz and Coker find common ground is on an assertion that what’s most needed to reform our mental health system is to provide people with the services they need when they most need them – immediately – and where they most need them – within their communities.
More careful and targeted
All but five states have AOT laws in effect, including North Carolina. But Swartz believes most states use AOT in a “very haphazard way.”
His proposal is that “we use it in a much more careful and targeted way, where there is real opportunity for it being effective.” Swartz would restrict the use of AOT to those who have already been hospitalized involuntarily, allowing them to be discharged sooner.
“In that sense, it’s a less restrictive alternative to hospitalization,” he said.
Swartz and his colleagues found positive results in their study of New York’s use of AOT: Improved outcomes for those who received court orders for AOT included reduced hospitalizations and lengths of stay, more likelihood of receiving intensive case management services and more involvement in outpatient services.
A second study found that AOT could also bring cost savings: “Assisted outpatient treatment requires a substantial investment of state resources but can reduce overall service costs for persons with serious mental illness,” Swartz and his co-authors wrote.
Mark Botts, an associate professor in the UNC School of Government and expert on mental health law, points out that North Carolina’s AOT statute stipulates that a person under an assisted outpatient commitment order can’t be physically forced to take medication or be forcibly detained for treatment.
Botts said he believes that in many cases the only real differences between voluntary and involuntary outpatient treatment are that involuntary treatment requires providers to make reasonable efforts to get patients to comply with the treatment and provides a means of transportation to receive it.
But Botts agrees with Swartz that AOT isn’t used very effectively in North Carolina.
“You’re talking about, in some scenarios, the hospital emergency department, the [local management entity], one of the LME’s providers and the court system all having to communicate effectively and coordinate this,” he said, and that’s not happening today.
And it falls to the service provider to ensure that the mandated services are actually provided. But to what extremes are providers being asked to go?
“If one of my clients is in an outpatient commitment situation, and I’m in a certain role, how far do I go beyond that role?” asks Geoffrey Zeger, a therapist in Durham. “It alerts me to the fact that they need monitoring, but how then do we get the services in place to do it?”
The role of coercion
What most concerns many advocates for people living with mental illness about AOT is that original question of agency – that it limits a person’s ability to help define his own recovery.
Advocates argue that the path to recovery begins with an assertion of rights and the recognition that with those rights come responsibilities.
Coerced treatment, Coker said, “removes a person’s voice and his will from the equation. If society takes control of a person’s life even when he or she is not exhibiting behaviors that would otherwise require inpatient care, we are trampling that individual’s rights to be his own agent.
“We take away the hope he might otherwise have had which could motivate him to recover. This is not sensible,” she said.
Zeger said he can see a place for AOT for a small segment of people with mental illness, as a treatment of last resort – but only if the needed services and support are in place.
“Outpatient commitment is like probation,” he said. “There are clear stipulations with consequences if you don’t follow them.”
But if receiving ongoing treatment is a stipulation of AOT, and that treatment isn’t readily available, “it’s a setup,” Zeger said.
Swartz points out that New York, where he and his colleagues found successes with AOT, has one of the most robust community mental health systems in the country.
But lack of community services has been an issue in North Carolina, where the mental health system has been in constant change since the beginning of reform efforts in the early 2000s and where many providers have exited the system.
Pamela Hyde, head of the federal Substance Abuse and Mental Health Services Administration, has written that in New York a lot of money was poured into the mental health system to make it work.
To the extent that the services are there, assisted outpatient treatment may be effective for some individuals, she said.
But if a state dedicated the same amount of money to non-AOT programs, Hyde said, “who knows what you’ll find. Perhaps coercion isn’t a necessary component of what makes AOT so effective.”
“If you develop an adequate treatment system, you could have natural supports in place, or low-cost paid support, that would accomplish the same thing, and it would be voluntary,” said Vicki Smith, executive director of Disability Rights North Carolina.
Coker said pre-discharge peer support services that help people transition back into their communities and into outpatient services have been successful in preventing re-hospitalizations.
“No force,” she said, “just sincere engagement and mutual support. That’s not rocket science.”
Even in extreme circumstances, Coker said, “Most people can respond to another human who confidently reaches out to him and carefully asks, ‘What has happened to you and how can I help?’”
She said society has a responsibility to create systems and encourage other approaches to recovery that are inviting, welcoming and accessible enough that people actually seek them out and engage.
“People are people,” Coker said, “and we are far more likely to help people recover if we engage them than if we force them.”