With each repetition, Donna Smith’s voice softens, but her hands constrict more tightly into fists.
“It is hell. It is hell. It is hell. It is …” – she reaches for another word, but there simply isn’t a better one – “hell.”
That’s her assessment of North Carolina’s mental health care system after being trapped inside it with her 31-year-old son, diagnosed as bipolar with psychotic features.
To Rick Brajer, the secretary for the state Department of Health and Human Services, the system is scattered and disorganized.
To Brian Sheitman, medical director of the WakeBrook mental health campus in Raleigh, it’s fractured and misfocused.
“The system is obsessed with access, but you rarely hear about quality,” Sheitman said. “We don’t know what that is or how it’s really working. The data systems don’t exist.”
Finding in the mental health morass some solid ground on which to build an exemplary system feels more daunting than colonizing Mars.
But the state is working on it. Gov. Pat McCrory is looking to a mental health task force of doctors, judges, patient advocates, lawmakers and law enforcement representatives to make recommendations for improvements by April.
“It’s hard to describe it as a broken system, because it’s not a system,” Brajer said during a task force meeting last month. “What are the building blocks, the foundation for building a system as much as we can?”
Changing the payment model is block No. 1 to Sheitman. Mental health care should be treated like a service, like fire and police protection, and not a profit-making business, he said. Providers are always going to underbid to get contracts then find they can’t afford to give quality care. Money should be distributed based on what a patient needs – housing, community support, medications – and not as fees for services. Keeping people out of expensive hospitals to begin with should be the goal.
“It has to be from the governor to Medicaid on down,” he said. “What happens now is that every agency looks out for themselves. Every hospital, every agency, everyone looks out for themselves, to make sure budgets are balanced.”
Another block would be creating a transparent system that collects data on the care and services each patient receives so decisions can be based on what actually works.
8,500 The number of people involuntarily committed in Wake County in 2014
44The number of states that held more people with severe mental illness in jail or prison than in a state psychiatric hospital in 2014
356,268 The estimated number of people with mental illnesses including bipolar disorder and schizophrenia who were in prisons and jails in 2014
35,000 The number of people in state hospitals
20 The percentage of American adults who experience mental illness in a given year
41 The percentage of American adults with a mental health condition who received mental health services in the past year
“If we only focus on getting more of things, we have more of something that doesn’t work,” he said. “We need to know what happened and why and set up a system that constantly improves.”
And the state, without question, needs more long-term beds. In 2014, there were 8,500 involuntary commitments in Wake County alone. People in crisis have waited an average of 3.5 days in emergency rooms. The Sheps Center for Health Services Research at UNC has estimated the shortage at 400 beds.
Or the size of Dorothea Dix hospital, Sheitman wryly points out.
“That’s the genius of that move,” he said. “It’s always easy to dismantle things. It’s a lot of work to build something up.”
It’s important, Sheitman said several times, that lawmakers understand that improvements don’t necessarily mean spending more money.
“We waste extreme amounts of money when we let people stay three days in a hospital when they need to stay several weeks,” he said. “When they have to be readmitted, that three-day stay was a waste.”
Donna Smith of Raleigh certainly knows about that. Over eight months, her delusional son was committed four times despite her begging that he be allowed to stay until his medications had stabilized him enough that he could take care of himself.
The last two back-to-back admissions lasted a total of five weeks. The man who finally emerged Jan. 28 was the sweet and thoughtful son she had been desperately missing. Her relief, however, has not washed away her anger, and she’s determined to channel it into change.
To Smith, the involuntary commitment process is the broken front door into a dysfunctional system. That’s been her focus in conversations with DHHS officials and several lawmakers this month.
Because her son wasn’t homicidal or suicidal, he kept being released, even though he was in no condition to “exercise self-control or judgment” or “satisfy his need for nourishment, personal or medical care ... or safety,” which the law says means he’s a danger to himself.
“Is the problem that professionals don’t understand the law is written that way?” she said, noting that she plans next to meet with judges. “That judges don’t understand how people can be a danger to themselves?”
Smith also is mystified by how little voice mentally ill people and their families seem to have, given that there are more people with mental illnesses than with heart disease or with all cancers combined in a given year, she said. She hopes to unify advocates through a nonprofit called Voices Action Network.
There are proclamations, pronouncements, and it doesn’t get better. Or it gets worse.
Brian Sheitman, medical director of the WakeBrook mental health campus in Raleigh
“Tell me,” she said, after ticking off the pink ribbons, red ribbons and puzzle-piece ribbons everyone knows. “Who knows the symbol for mental illness? Nobody. Why?”
Sheitman wishes he had more confidence that the governor’s task force would lead to something meaningful. He believes lawmakers are as frustrated as everyone else and want to help. But the best ideas, he said, rise from the people on the ground.
“These things buy politicians time, then they forget about it,” he said. “The public knows it, too. There are proclamations, pronouncements, and it doesn’t get better. Or it gets worse. Sometimes it’s better if it just goes away.”
What isn’t going away are our mentally ill neighbors and their families. And until we figure this out, they’ll continue to go through hell.
Wheeler: 919-829-4825, firstname.lastname@example.org, @burgetta_nando