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By Rose Hoban
In the waning days of this year’s legislative work session, lawmakers abruptly revived and passed a bill aimed at revising North Carolina’s laws to address the flood of people with mental health crises in hospital emergency departments.
Officials from the state’s hospital association had convened administrators, advocacy organizations, academics, mental health professionals and others over several years to examine some legislative fixes. Those leading that effort say they’ve come up with a bill that will improve processes for people who find themselves in crisis.
“We did this because we were tired of seeing these people, these humans trapped in a system that there really was no escape, this system of [involuntary commitment],” said Julia Wacker who leads mental health policy analysis for the North Carolina Healthcare Association. “This is far too often the way of treatment … stick these folks in handcuffs, put them in a squad car, and take them to the emergency department.”
But trust is hard to come by in North Carolina’s mental health system, and people who have been part of that system as consumers of services say they feel let down by a process that excluded their voices, as many of the state’s most prominent self-advocates were not invited to participate. They say any result will fail to account for the pain they’ve experienced as a result of the state’s fractured behavioral health system.
“They did not tell us about this bill,” said longtime advocate Martha Brock, who has been hospitalized for mental illness in the past.
Brock, who serves on the state Consumer and Family Advisory Committee, which informs the Department of Health and Human Services on behavioral health issues, said that she was frustrated after being shut out of the negotiations around the bill. She also has problems with some of its provisions.
Another longtime advocate Laurie Coker complained that the bill was revived suddenly, moved quickly, and that they were given little time to respond to changes made in the final draft. Both women expressed concern about definitions of “incompetence,” about who gets to make decisions for a person once they’re engaged in the behavioral health system, and about the privacy rights of people in that system.
And their complaints hint at some of the long-standing divisions within the mental health advocacy community itself, as well as the problems that come when institutions communicate with a limited pool of advocates.
The bill, which has 45 sections, takes an ambitious swipe at fixing problems that arise from the way North Carolinians in crisis often end up interacting with the state’s behavioral health treatment system. If a person is hearing voices, or acting bizarrely, or threatens to hurt him or herself, the default response is often to call 911, which prompts a visit from law enforcement.
All too often, police arrive and decide to transport a troubled person to seek help. That’s when things go sideways: The default is to place the person in shackles, or at least into the secured back of a patrol car. Then it’s off to a hospital emergency department, where that person may wait days or even weeks for “involuntary commitment” to one of North Carolina’s few psychiatric facilities.
“Any other health crisis you call an ambulance, but we don’t have an equivalent to an ambulance in our system for behavioral health crises,” said Corye Dunn, a lobbyist for Disability Rights North Carolina. She said instead, someone who is experiencing “their worst day ever” is too often further traumatized on the way to treatment in the back of a patrol car.
But it’s the reality driven by the recent history of North Carolina’s mental health system.
Through the 1990s, there were county and area agencies, physical places where people knew to go in case of a psychiatric emergency. In the early part of this century, lawmakers decided to consolidate and privatize services. The legislature also defunded inpatient treatment facilities with the intention of putting the savings into community resources.
But lawmakers never appropriated the dollars, and the system has been in almost a constant state of “reform” for close to 20 years. The result? There are few alternatives to the law enforcement, to hospital emergency department, to involuntary commitment path for getting help.
Wacker said some 100,000 people in North Carolina traveled that route in the past year. That’s largely what drove the discussions among stakeholders, which went on for about two years.
“How did we ever end up in a situation where we have 100,000 people a year … that have reached that point of needing to hurt themselves or somebody else?” Wacker said. “That means that we are not providing the community-based preventative care.”
One part of the 35-page bill orders each of the seven state-funded mental health managed care organizations to create a “community crisis services plan.”[sponsor]
The bill sets out multiple requirements, said Dunn, “Like, where should we take people for their first assessment? How should we transport them? What agencies should be contracted to do that transport? Does it have to be law enforcement? Or could we contract with an entity that is more focused on behavioral health and more more likely to transport people without restraints.”
“One of the things we hear from people is, you know, ‘How can I go back to my apartment, when my neighbors just saw me get into a car with sheriff’s deputies?’” she said.
Plans could include the creation of community-based services such as Durham’s Carolina Outreach, a walk-in behavioral health clinic which has crisis counselors on staff.
The bill also puts more of an emphasis on psychiatric advance directives. Like a health care proxy or a living will, PADs are created by people with histories of mental health issues to provide instructions to health care providers detailing the best way to treat them should they become unable to communicate their desires adequately.
“Even if you have a PAD, the way the statute reads, the medical provider may or may not follow your recommendations,” said Cherene Caraco, who runs Promise Resource Network, a mental health services agency staffed completely with people who have been treated for a behavioral health issue during their lives, including Caraco. “It’s very, very open in terms of what their legal requirements are for adhering to your preferences. I would like to see that part strengthened.”
Caraco’s Charlotte-based organization holds regular events where her staff helps people with mental health histories create their own PADs. She also said she was not contacted for the crafting of the bill despite being a nationally recognized consultant on behavioral health management and treatment.
“There’s a lot of opportunities here around PADs if we have a system in place that understands, acknowledges them, and gives people the opportunity to develop them and then recognizing them within the system,” she said. “We’re not there yet.”
The advocates’ biggest concern centers around the issue of forced treatment for psychiatric issues, either by compelling a person into a treatment facility or ordering them to take medications. “Outpatient commitment” is that something that already exists in North Carolina law, but Caraco and the others said they were disappointed that the law did nothing to change that.
“If you have never been on psychotropic medications, you have no idea of the impact they have on you,” Caraco said. “I’m a person on psychotropic meds because I chose to. It took a lot of effort to find out what actually worked for me and I’ll tell you meds are not always the answer.”
Caraco also disputed the idea that when someone resists treatment, they should be compelled to accept it. Instead, she said sometimes people are not engaging in treatment because they’re not being given options they want or that they’ve had input into.
She said this would never fly in the world of medical care.
“Think about it this way, if you get diagnosed with cancer, for your medical treatments, you’re given a diagnosis, you’re given a prognosis, you’re given information, and with that knowledge, there are options for treatment,” she said. “What happens when you become a psychiatric patient, you are no longer given options, you’re given a treatment, period. And if you don’t comply, we’re gonna have you hospitalized, or some times incarcerated.”
Caraco, Coker and Brock all expressed frustration that forcing treatment can be traumatizing, and dehumanizing. And as it’s currently set up now, there are too few community services that people with behavioral health issues really want to be a part of.
“None of it is based on choice, engagement, informed decision-making,” Caraco said.
“What makes people more willing to seek treatment is feeling like there’s someone who really cares and knows them,” said Coker, who founded and runs the Green Tree Peer Center in Winston-Salem. “It’s not just about symptom management.”
She also said any improvements to commitment law will only succeed if lawmakers adequately fund and structure the system around more up-to-date and effective service provision than at present.
Wacker pointed out that many of the concerns brought up by Coker, Caraco and Brock are already in the law and have “nothing to do with this bill.”
Disability Rights’ Dunn said she hopes the legislation will reduce the overall number of commitments. She also noted if there’s any increase in utilization of involuntary outpatient treatment, it would be more folks diverted away from hospitalization.
Wacker also said she gets the concerns that advocates have about forced treatment and involuntary commitments to care.
“I’m 100 percent in agreement that [involuntary commitment] is being used as, you know, a way of engaging people into treatment, and that’s not right. That’s not what it’s supposed to be. It’s supposed to be this obscure legal process … we use only in desperate situations,” Wacker said. “Yet with community services drying up in the way that they have, it is now become the standard entry point into care.”
In the end, the problems around the bill go back to the fact that trust is hard to come by in North Carolina’s mental health system, and the exclusion from the negotiations has left advocates frustrated and wary.
When pressed on the issue of consumer involvement, Wacker argued there were many advocates at the table, including representatives from the National Alliance on Mental Illness.
“And, you know, we absolutely made amendments through the process based on their concerns,” she said.
But many people with mental illness say NAMI, as an organization, can be driven more by the concerns of the families of people with mental illness and might not be the best spokesman for mental health service consumers themselves.
“Think about what your parents wanted for you and now think about what you wanted for yourself,” said Caraco. “How closely did they align? Did you marry the person your parents wanted you to? Did you choose the career your parents wanted for you?
“Their voice is not our voice, they’re different perspectives,” she said. “They’re not the same.”
Coker wrote an email to lawmakers and to DHHS about the bill saying people working with the state need to do better.
“It begins with having the system far more informed by system users, their family members, and local stakeholders who actually experience this system in personal ways,” Coker wrote.