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Breakdown: Reform creates a bewildering system

Photo by Ava Barlow. In 2006, as the result of an overhaul of the state’s mental health care system, the OPC Area Program began outsourcing the majority of its services. Though still open, there’s been a vast reduction of services at the Northside clinic as a result.

By Taylor Sisk
Staff Writer

This story is the third in a series about mental health care
in North Carolina.

[Breakdown series main page]

“There’s a lot of story,” says Valerie Kramer, assessing the narrative of her only child, Jeff.

“I get really angry,” Kramer says. “I see him so sick, and my son is a very bright person. He made ‘A’s in school; he won awards. All his cousins went to college and are very smart and successful in life, and I thought, ‘Jeff will do that.’”

At 19, Jeff Kramer, now 24, was diagnosed with paranoid schizophrenia.

“I don’t want to define my son with schizophrenia,” Kramer wrote in her journal earlier this year. “I want to know more of who he is. I want to be with him as he is, take every moment I have with him and cherish it.

“But then when his symptoms get really bad he becomes emotionally and mentally altogether unavailable.”

For the past five years, Kramer has been on an uninterrupted search for a place, both physical and emotional, where her son might find a measure of peace.

It’s been a hell of a journey, one made worse, advocates say, by the privatizing of mental health care services in North Carolina.

A new regime
The numbers are staggering.

According to the National Institute of Mental Health, 26.2 percent of Americans aged 18 and older suffer each year from a diagnosable mental disorder. Based on the 2004 census, that’s 57.7 million Americans.

The institute further reports that “the main burden of illness is concentrated in a much smaller proportion – about 6 percent, or 1 in 17 – who suffer from a serious mental illness.”

Jeff Kramer is among those latter. He’s spent the past three weeks in Central Regional Hospital, his eighth or ninth visit (it’s hard for his mother to recall for certain) to a state mental health facility. No treatment has proved effective for long. Jeff refuses to take his antipsychotic medication, which complicates his situation. Most, but not all, psychiatrists believe medication to be a critical component in the treatment of the majority of schizophrenics. He doesn’t believe he’s at all sick, and therefor has generally resisted any form of treatment.

In sum, Jeff is very difficult to treat.

For Valerie Kramer, that’s the bad news. The kicker is the dizzying mental health care system through which she must navigate in hopes of finding the care Jeff requires, the outcome of the General Assembly’s decision to overhaul the previous system and introduce reform.

In 2001, Gov. Mike Easley appointed Carmen Hooker Odom as Secretary of Health and Human services with a mandate to shake up the mental health care system.

Nicholas Stratas, a psychiatrist in private practice in Raleigh and former state deputy commissioner of mental health, recalls Hooker Odom coming to speak at a North Carolina Psychiatric Association meeting soon after she was appointed.

“She starts off by saying, ‘Folks, the train has left the station, and if you’re not on it you’re going to get left behind.’ That was her opening remark, and I thought, man, who is this?”

Hooker Odom had been a Massachusetts legislator and a health care lobbyist. She put forth a plan, later passed into law, by which county mental health care area programs would no longer directly provide treatment to patients. Local Management Entities (LMEs) would oversee private providers and, theoretically, more treatment would be provided within the communities, thereby freeing up beds in the four state-run mental hospitals for those most critically in need. The two key concepts behind reform were privatization and the growth of community-based services.

Things didn’t go well. Private providers gradually began to go out of business. In many communities, particularly rural ones, needs were going unmet, most frequently those of the poorest and those most in need of help. Many providers were “cherry-picking” services, providing only those that could be profitably provided – assistance with grocery shopping or help with homework, for example. Many providers were grossly overcharging for these services.

Hooker Odom, herself – who resigned in May 2007 to become president of Milbank Memorial Fund, a health-policy foundation based in New York – acknowledged the problems. In April 2006, she told the News & Observer: “To create that change, you have to go through the process of destroying the existing system. You don’t have to be a psychiatrist to know that people do not like change.”

What recipients of mental health care services and their families most particularly didn’t like was that there didn’t seem to be a new system to replace the previous one. There were some fundamental flaws that no amount of patience with change would remedy. There were elements of that old system that the new system needed to succeed.

For example:

“[Hooker Odom] decided these LMEs would do the work of the state,” says Stratas. “They would provide data processing, accountability, all of the things that I think the state is responsible for. The LMEs can’t do that – they’re not going to recruit high-caliber data processors, sociologists, evaluators. They can’t afford it.”

While acknowledging that perhaps larger counties such as Wake or Mecklenburg could handle such a responsibility, most, says Stratas, could not.

Another, more critical issue was one of mandate.

What that means, says Drew Bridges, a psychiatrist and former medical director for an area program that covered four counties north of Raleigh, “is that someone is specifically identified as being responsible for caring for the sickest among us,” as well as those with no insurance or money.

Within the new framework, he says, that mandate was thrown out the window. The new mandate was to earn a profit.

Meanwhile, with fewer services being provided in the communities, more people were entering the state institutions.

The carousel

After being released from Umstead the first time, in 2004, Jeff began outpatient treatment with the Orange Person Chatham (OPC) Area Plan, which at that time was resisting divestiture of its services.

In 2006, OPC finally divested and Caring Family Network (CFN) became the primary provider of mental health treatment in the three counties. Then in February of last year, CFN announced that it would be discontinuing all outpatient and community-based services.

Upon Jeff’s release that first time, a team of professionals, including clinicians who would be supervising his outpatient services, had met to map out his treatment. More recently, that wasn’t the case.

After subsequent short stays in UNC Hospitals, Jeff was enrolled in UNC’s Schizophrenia Treatment and Evaluation Program (STEP) and its Alcohol and Substance Abuse Program (ASAP). His mother said things went well for a while.

But by 2006, Jeff Kramer’s behavior had once again become erratic. He was using marijuana again and, his mother says, most probably harder drugs, and was encouraged to enter the UNC department of psychiatry’s Outreach and Support Intervention Services (OASIS).

He got worse though, and in the summer of 2006 Jeff ended up back in UNC Hospitals. His mother says that she was told by hospital staff that the only way Jeff could be released would be to agree to seek the help of XDS Inc. in Chapel Hill, who, she was told, could provide more comprehensive services. XDS assigns what’s called an assertive community treatment (ACT) team to each of its clients. Jeff agreed to enter the program.

In the past, Jeff had taken his antipsychotic medication sporadically if at all – didn’t believe in it; didn’t believe he was sick. He was again refusing it. He was what many in the profession refer to as a “hard case.”

‘Pulling alligator teeth’

If there is one “super-colossal problem” with the state’s mental health care system as presently reformed, says Thomas Smith, an Asheville-based psychiatrist and longtime health care advocate, it’s a lack of talented, comprehensively trained health care professionals.

“They’ve been alienated,” Smith says. “A lot of them were just tossed out into the wind” when mental health care services were privatized.

Smith says he’s been called upon to help recruit psychiatrists from outside the state. “It’s like pulling alligator’s teeth,” he alleges. “To come into an atmosphere like this, where everything is in a state of disruption – who would want to come and join this force?”

Perhaps even more critical though, says Bridges, is that a system of training new mental health care professionals is gone.

The area programs were essentially training programs for mental health care professionals, Bridges says. “There was a workable relationship between the training programs and the area programs where people could learn how to do this work, and that was just all wiped away.

“No one graduates from a university-based training program really knowing how to work with the chronically mentally ill population. You have to learn that working alongside more experienced people.”

That’s true, he says, for psychiatrists, nurses, social workers – anyone in the profession.

How, in a profit-motivated system, Bridges asks, can inexperienced people be accommodated?

The ‘complicated people’

When mental health care services in North Carolina were privatized, says Bridges, “It was pretty clear that the more complicated people … were not going to be served.”

That would include Jeff Kramer.

Which means Valerie Kramer, who herself deals with a number of health issues, has continued to doggedly soldier through in pursuit of the care her son requires, to better learn how to maneuver through a system that baffles and beleaguers even the professionals within it.

Bridges says that it takes a lot of money and time to create a system that those most in need can navigate, and “if the value is a profit motive, nobody is going to create this kind of system because you can’t make any money on it.”

Jeff will be released this week from Central Regional Hospital. He chose not to take antipsychotics while there and wasn’t forcibly medicated.

On the eve of his discharge, his mother reports that his “mind seemed so clear today. The structured environment really helps. We all agree on that.”

A team that included a hospital social worker and psychiatrist and a member of Jeff’s ACT team met to discuss his next steps. Jeff has agreed to return to the ACT program.

About the immediate future, Valerie is today more optimistic than she was a week ago. “But the long term,” she adds, “is still up in the air.”

That’s because there’s “a lot of story” – this story of Valerie Kramer’s son’s struggle with schizophrenia – a narrative made considerably more complex and uncertain by the failures of mental health care reform in this state.

The names of the mental health care recipient and his mother have been changed.

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