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Breakdown: Is our best enough?

By Taylor Sisk
Staff Writer

XDS Inc. in Chapel Hill is a rare mental health care success story, an organization that has managed to navigate North Carolina’s post-reform mental health care morass.

But it barely hangs on. Challenged each day by sheaves of bewildering paperwork and limited funding, it’s a “day-to-day struggle,” says XDS executive director Thava Mahadevan, to stay afloat and continue providing very critical treatment, rehabilitation and support services.

XDS was launched a decade ago under the umbrella of the Orange Person Chatham (OPC) Area Program, the state-administered agency that prior to the privatization of mental heath care services, as mandated by House Bill 381 in 2001, provided those services for the three-county region. XDS stands for “cross-disability services” and its objective is to provide a comprehensive suite of outpatient services with a team of professionals assigned to each client, available 24 hours a day.

Despite resistance, success

The approach is called assertive community treatment (ACT).

ACT is considered evidence-based treatment for people with severe and persistent mental histories — those diagnosed with schizophrenia, a bipolar disorder and, in some cases, major depression — and is particularly designed for those with dual disorders, which would include a substance-abuse problem. The term “evidence-based” means that the ACT model has consistently shown success in the treatment of clients with these disorders.

The ACT model was introduced in the early ’70s by a group of mental health care professionals at the Mendota Mental Health Institute in Wisconsin.

Across the country, a deinstitutionalization movement was afoot, with patients being moved out of state institutions and into communities that were often unprepared to meet their needs. The Mendota team sought to fill that gap by better understanding why patients who seemed to do very well while within an institution were nonetheless being recommitted on a rapid and regular basis.

Obviously, these people needed professional care, but what was the sum of their needs?

The objective was to replicate a mental health care ward to include a team of providers that would include a psychiatrist, psychologist, nurses, social workers, perhaps a vocational specialist, working with a small group of patients to provide flexible and around-the-clock care.

They recognized, says Mahadevan, that “when patients were discharged, they didn’t know where to go to get their medications. If they had a problem at three in the morning, they didn’t know who to call. So they said, ‘We need to replicate what we do in the hospital,’ and they called it ‘hospital without walls.’”

There are now ACT teams in most every state and in other countries, including Canada, Australia and Japan.

In the mid-’90s, Mahadevan, who was a graduate of UNC’s rehabilitation counseling program and had done his internship at John Umstead Hospital in Butner, came to work at OPC as a case manager. He had become intrigued by the ACT model and believed it was needed in this area. In 1997, he and a few colleagues traveled to Delaware to see an ACT team in action, and were impressed.

“We thought it was amazing just to see how things were happening,” Mahadevan recalls. “People were out and about. One of the biggest contrasts was that clients weren’t coming to the mental health center, staff were going out to see them.”

Despite resistance from the more traditional-minded mental health community, who, Mahadevan says, told him that “this is not how we do things,” a cross-disability program using the ACT model was launched at OPC and proved successful.

Then came the call from Raleigh for reform – for the divestiture and privatization of the mental health care services area programs the state had previously provided.

Margaret Brown was on the Orange County Board of Commissioners at the time and she began visiting with local mental health care providers to explore with them the possibility of turning themselves into nonprofits to continue providing the services they had under the old model.

Brown now recalls that after a talk she had given, Mahadevan came up to her and said, “’Are you serious? You really think we could turn ourselves into a nonprofit?’ And I said, ‘I don’t see why not.’”

XDS functions today as a nonprofit mental health care provider, working to meet the full range of mental health care needs of some 150 clients, many of whom have failed in other, less-intensive outpatient programs. Mahadevan and the colleagues who joined him from OPC never seriously considered functioning as a for-profit entity.

“Clearly, this is not the business to make money in,” he says. “We just felt that if you have shareholders waiting for you to make a profit, it’ll be a huge conflict of interest” – balancing the financial bottom line against the objective of providing truly comprehensive, critical care.

“How Thava does it,” says Brown, “I will never know. But he does it.

“It’s just amazing what he’s done.”

‘Engaged observers’

Valerie Kramer – whose son Jeff’s experiences with the state mental health care system we’ve been chronicling in The Carrboro Citizen – doesn’t doubt that Mahadevan and his team have her son’s best interests at heart.

But she’s frustrated. She has health issues of her own to deal with, and the net effect is one of near-debilitating exasperation – “Why can’t my son be treated? Why can’t he be made more whole?”

Jeff has been with XDS for just over two years and prior to that was on a merry-go-round of referrals, commitments, steps forward, leaps back.

At 19, five years ago, Jeff was diagnosed with paranoid schizophrenia. But he doesn’t believe he’s sick – a common, though not universal, symptom of schizophrenia – and refuses to take his prescribed medication.

Jeff’s psychiatrist at XDS, Carol VanderZwaag, acknowledges that not a lot of progress has been made with Jeff, but that the team has built a relationship with him, “and that’s very, very important. … Without that, there’s not much else you can do.”

“The only thing that [Jeff] rejects about us,” she says, “is our opinions” – that he has an illness and that it would serve him well to take his medication. In fact, VanderZwaag says that she believes Jeff could function relatively well in the community under medication.

“I think the thing that’s somewhat unique [about Jeff],” VanderZwaag says, “is that he can go long periods of time where he functions. … He can go long stretches kind of hanging in there. And that’s good, and that’s bad. It leaves very few openings to try to help him maybe do something different. It re-enforces his concept that nothing is really wrong.”

Without that acceptance, VanderZwaag says, the team can only strive to maintain contact with Jeff, try to keep him in the housing they’ve secured for him and hope that he remains relatively safe.

They are, essentially, says VanderZwaag, “engaged observers.”

Which is difficult for his mother to accept.

“I think they are very good at what they do, when they do it,” Kramer says.

Mahadevan acknowledges that it will often seem to family members that XDS is not doing enough. That’s frustrating to him not only because his organization just became nationally accredited and meets very high standards established by a coalition of ACT providers, but also because he too struggles each day with how to most effectively deploy his team in order to provide all the services he considers vital – and stay in business.

When the program was still within OPC, prior to reform, an administrative staff handled the paperwork; his team concentrated solely on providing care. Now they have to do it all, or not get paid.

The majority of XDS’s funding comes from Medicaid, and Medicaid, says Mahadevan, “is looking for every possible reason not to pay. These are authorized services; our clients have Medicaid.”

So no problem, right?

“I would say there are about 60 or 70 different steps that you can screw up before you get paid,” says Mahadevan. Payments, which are processed through an organization called ValueOptions, are then slow in arriving and only then in increments. Moreover, with the documented abuses of our reformed health care system, those dollars are being extended increasingly begrudgingly. Payment rates for ACT services have recently been reduced.

Meanwhile, Mahadevan must keep the ship afloat, which entails long hours on the job.

“Where do you find the time to do this work?” Mahadevan asks. “Do you ask staff to stay to 7:00 or 8:00? Easily, I work 75 to 80 a week, every week; there’s no way this work can be done without spending that amount of time.”

Then, he says, to have to explain to a mother, “’I’m sorry; I just ran out of time to work with your son today.’ It’s so hard.”

Failure to communicate

Schizophrenia goes nowhere fast. Progress, says VanderZwaag, is measured not in days or weeks but in years.

The rub here though, as Mahadevan points out, is that we’re operating in a system extremely ill suited for such pacing.

For example, Medicaid demands that he report on the progress of his patients on a monthly basis. The paperwork involved is enormously time consuming; reporting quarterly or semi-annually, he suggests, would be much more practical.

More broadly though, mental health care reform in North Carolina was in theory going to direct more patients away from the state institutions to be cared for within their communities, where private firms would be competing to provide more and better services. In practice, our state institutions are now more overcrowded than before and most of those private firms have learned that the only way to make a profit is to cherry-pick services: this one is potentially profitable; that one, never.

The result, critics say, is an overburdened system on the brink of total collapse, a conveyor-belt system demanding quick fixes, when, in matters so complex and critical, quick fixes are few and far between.

VanderZwaag laments the fact that under this system, communications between care providers within the state institutions and those in the communities has broken down. The staffs of these facilities are overworked. And while in the past, if a psychiatrist in a state institution wanted to discuss a patient, upon arrival or prior to release, she knew to call the area program in the community from which that person had arrived. Now she may have no idea who to call.

VanderZwaag believes that Jeff Kramer has suffered from that lack of continuity of care.

When her son was diagnosed with schizophrenia, Valerie Kramer moved back to this area from Asheville, believing that here her son would receive the best care possible. She acknowledges that perhaps he is.

In her journal, she has written: “Everybody says, ‘The ACT team has the services your son needs; they’re the ones who can provide it, and they are providing it.’ That’s what I keep hearing. That if they aren’t, and if it isn’t working, it’s because of Jeff” — that it’s either because of his inability or unwillingness to acknowledge that he’s ill, or his refusal to take his medication, or both.

“Now I’m just trying to say, ‘I don’t want to blame the ACT team.’ I don’t know….”

Here’s what scares her the most: “I fear that my son is receiving the best mental health care our state has to offer. It’s unfortunate and sad when the best is lacking in so many important ways.”

3 Responses

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  1. KKD

    We are fortunate to have a gem such as XDS in our community. Heralding from the halls of John Umstead Hospital, Thava Mahadevan, along with Carol VanderZwaag and others, brought their gifts and talents into our community. I see ACTT staff in action almost daily. They deeply care about the people they work with and they work hard.

    Thava in no way overstates the paperwork with the 60 or 70 + ways Value Options and the Division of Medical Assistance can trip you up so you don’t get paid for care you provide or need to provide. These “trip ups” have absolutely nothing to do with the care a person needs, other than it keeps excellent non profits like XDS – working to realize their mission – living on the edge of financial existence. Providers can be here one day and gone the next. Sunk.

    We need a fleet of ships that does not require endless unwarranted work just to stay afloat. We need state leadership and policies that “disallow” the seemingly deliberate constant building, shifting, and sometimes hiding of artificial barriers that make navigation dangerous. We are not out here sailing just for the sake of sailing. We are sailing with our citizens living with mental illness. Let’s make their sailing safe by removing the barriers that can sink their ship.

  2. Gina Bostic

    We are supposed to have treatment teams in our community and should expect the best.

    I also see XDS ACT team in action, but not daily, weekly and sometimes, do not see them in action for over a month at the time, while my son has gone without care.

    –“I’m sorry; I just ran out of time to work with your son today. It’s so hard.” (Thava Mahadevan) –This “trip-up” does interfere with the care a person needs.

    I’ve heard many excuses and reasons for chronic longstanding neglect, but never any apologies for running out of time. Lack of treatment is always either blamed on the “disease” or the client.

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