High anxiety

“We’re all terrified that all of our loved ones are going to be hanging — with no treatment, no nothing.”

— Gayle Wilson, mother of a mentally ill adult

Until Kathy Wallace‘s adult son stopped taking medication for his bipolar disorder this spring, she’d probably never imagined that the Buncombe County jail would one day become his temporary salvation.

But after Broughton (a state mental hospital in Morganton) refused to keep him and a misdemeanor charge landed him behind bars for a month, the jail became a surrogate hospital ward of sorts. Only then, says his mother, did he agree to resume taking his medication.

“I knew the system was bad,” says Wallace — but until she actually lived through this experience, she didn’t know how bad. “You’re really helpless. It really couldn’t be worse. There is no net; there really is nothing. It turned out OK, but it’s not because the system did what it was supposed to.”

Wallace is openly critical of the publicly funded mental-health system, now on the brink of a total overhaul — driven, says the state, by a desire to address chronic problems and standardize offerings across the state — that aims to revamp the way services are delivered to those suffering from mental illness, developmental disabilities and substance-abuse problems. At the same time, Wallace fears that possible state budget cuts could cripple services.

She’s not the only one who worries. The intersection of looming state mental-health reform with probable budget cuts stemming from the state’s financial crisis has other area residents deeply concerned too.

“We’re all terrified that all of our loved ones are going to be hanging — with no treatment, no nothing,” proclaims Gayle Wilson, whose adult son pays only what he can afford for treatment through the Blue Ridge Center in Asheville.

Both Wallace and Wilson are actively involved in the Western Carolina chapter of the National Alliance for the Mentally Ill (NAMI).

Making matters worse is the lack of detailed information about how the reformed mental-health system will work. That uncertainty has left local families, county leaders (who must soon assume responsibility for local mental-health services) and local mental-health professionals at loose ends.

The stakes are high: The state now spends about $1.8 billion annually providing services to more than 300,000 North Carolinians.

Outlook: hazy

Last October, the General Assembly passed legislation launching sweeping mental-health reform. Since then, affected families have been struggling to understand exactly what the coming changes will mean for them. At least two public forums have been held in Asheville: one by the state just before the legislation passed last October, and one in June featuring panelists from the state, the Blue Ridge Center and Buncombe County. At press time, another forum was scheduled for Tuesday, Aug. 13.

“I guess my biggest concern is [that] when I go to these meetings on reform, nobody can tell us anything,” Wilson complains.

Even Area Director Larry Thompson of the Blue Ridge Center doesn’t have all the facts. Although the state has made it clear that it wants to concentrate on providing services to the severely ill, Thompson still doesn’t know what those services will be, what restrictions there might be on providing them — and how much money will be available to pay for them.

The planned reforms aim to radically redesign the state’s mental-health landscape, changing both who is eligible for services and who provides them. The N.C. Department of Health and Human Services is shepherding the shift, aiming to redirect state money from an “excessive reliance” on institutional care to a community-based system, according to the July revision of the state’s five-year reform plan.

Bolstering that goal is the Olmstead decision, a 1999 U.S. Supreme Court ruling which determined that unjustifiably keeping someone with a disability in an institution constitutes discrimination under the Americans With Disabilities Act.

North Carolina’s mental-health reform has been in the works at least since 1998, when the state legislature ordered a comprehensive study of the state’s psychiatric hospitals and area mental-health programs. Newspaper stories around that time documented chronic understaffing, mismanagement and poor patient care at the state hospitals, according to the Associated Press.

The study (completed in March 2000) concluded that North Carolina is spending too much money on its hospitals and that community mental-health services vary widely across the state. To address these problems, the report advocated reducing the number of beds in the state hospital system and improving accountability by shifting the ultimate responsibility for services from area programs to counties or multicounty entities. Those recommendations are now elements of the reform plan.

And instead of letting area programs like the Blue Ridge Center continue providing services, the plan calls for those programs (under contract with county government) to manage services primarily provided by the private sector (even though, in many areas, those services aren’t even available privately).

As part of reform, officials from Buncombe, Madison, Mitchell and Yancey counties (the area now served by the Blue Ridge Center) have been talking with their counterparts in Henderson, Transylvania, Rutherford and Polk counties about merging their separate programs into one management entity.

A key emphasis of the plan is focusing the state’s limited resources on those who are severely disabled.

“It is true that some people who currently receive services now will need to seek them elsewhere,” notes State Plan 2002: Blueprint for Change, the updated five-year plan. “However, this will be part of a transition process.”

Making that transition, though, will be no mean feat. The reform plan gives county governments an October deadline for telling the state what they plan to do; by next April, they’re supposed to assemble a “local business plan.” The new management structure is supposed to take effect by July 1, 2003. But the Buncombe County Board of Commissioners has already voted (on Aug. 6) to ask the state to delay that timetable by at least six months because board members don’t have enough information about what services they’ll be required to provide and where the funding will come from.

And it’s hard to start recruiting private providers when you don’t know what the reimbursement rates will be, Thompson observes.

Even as members of NAMI’s local chapter worry about how reform and budget cuts will shake out, NAMI North Carolina (the parent organization) supports the state plan and actually helped to shape it, reports Executive Director Kay Flaminio. The main problem with the existing system, she says, is that there’s not enough money plowed into local programs.

When less is less

Indeed, even as the state is busy working out the details of mental-health reform, North Carolina’s well-documented budget woes are complicating matters.

To address the lack of services in many towns and counties, the plan also calls for funneling more money into adequate housing, job training and treatments, according to The News & Observer of Raleigh.

Meanwhile, however, state legislators have been brandishing a budgetary ax at the existing system. A budget approved by the Senate slices $20 million from case management, $32 million from the Community Alternatives Program (which keeps people out of institutions by paying for therapies and treatments at home) and $29.2 million from local mental-health programs, The News & Observer reported last month.

A preliminary House budget released Aug. 5 would restore some of the Senate cuts in health-and-human-services programs, according to the Greensboro News & Record. After the House debates the plan and votes, senators and representatives will have to resolve any differences between the two spending plans for the fiscal year that began July 1.

“Between the shortage of money and the reform, nobody knows for sure what it’s going to look like at the other end,” gripes Dan Lane, a Haywood County man whose adult daughter depends on services provided by the Blue Ridge Center’s Mountainhouse, a day program for the mentally ill.

A $50 million Mental Health Trust Fund created last year would have helped address the situation — but Gov. Mike Easley seized $38 million of the money in February to help balance the state’s budget, notes Flaminio of NAMI North Carolina, adding, “Unfortunately, the governor of North Carolina doesn’t really understand mental illness.”

These problems aren’t lost on Sen. Steve Metcalf, one of two local legislators who attended a recent legislative forum hosted by NAMI Western Carolina. State Rep. Mark Crawford was also on hand, as was Metcalf’s challenger in the upcoming election, former state Sen. R.L. Clark.

“Don’t get confused with reform and a major budget crisis,” Metcalf cautioned the group, adding later: “There hasn’t been any implementation of reform at all. The things that are happening out there, the funding cuts are … due to the budget crisis.”

The Buncombe County Board of Commissioners has already slashed its $600,000 annual payment to the Blue Ridge Center to $465,000 for fiscal year 2002-03 — and then frozen even the reduced payment — pending receipt of about $6.2 million in state reimbursements withheld by the governor. Thompson, however, notes that state law prohibits counties from cutting funding to mental-health centers below what they’ve been providing on a regular basis.

“Somebody would have to challenge that,” he observes. “I guess we’re kind of waiting to see what Buncombe does.”

And even the $600,000 figure is a pittance compared to the funding level other counties provide, charges local mental-health advocate John Rowe, who serves on the Blue Ridge Center board. Indeed, last year’s per capita spending for the counties in Blue Ridge’s geographic area ranked near the bottom — 36th out of the state’s 38 area programs, according to Blue Ridge.

Vice Chairman Bill Stanley of the Buncombe County Board of Commissioners, however, notes that Buncombe kicks in more than the other counties served by Blue Ridge, observing, “They’ve never asked for any more.”

Factor in the state budget uncertainties, and Blue Ridge is bracing for a $1.5 million cut in its budget of around $34.5 million, which could mean eliminating as many as 20 or 30 positions (some already vacant). And that, says Thompson, would affect both the range of services provided and the number of clients served.

“Dollars are being slashed that would assist good, worthwhile people,” asserts Rowe, adding that compared with other counties, Buncombe’s level of support is “unspeakable, shameful and border[ing] on being inhumane.”

Also sounding a gloomy note is Florence Rowe, co-president of NAMI Western Carolina (she’s also John Rowe’s wife): “The mental reform plan is to put the care back in the community, and if the community — if the county — does not fund it properly, then the prospects are very grim.”

In the trenches

Gayle Wilson’s adult son has come a long way from the time a few years back when he ran up a $1,000 phone bill in one month during one of his manic episodes (a common symptom of bipolar disorder). Eventually he left UNCA and became homeless, his mother recalls.

Thanks to a college friend, he finally realized he was ill and sought treatment at Charter Hospital (now closed) and, later, at the Blue Ridge Center.

Wilson’s son is now living on his own, attending college once again and working part time as a computer tech person in Asheville. He pays for three kinds of medication (total cost: about $600-$800 a month), blood tests (to monitor the medication) and sessions with a psychiatrist, all on a sliding scale at the Blue Ridge Center.

Under the reform plan, however, Blue Ridge would morph into a “local management entity” that would coordinate care provided mostly by the private sector. The reconstituted Blue Ridge, says Thompson, would offer only emergency services, case management, screening and referrals.

“I don’t think that they can shuttle all these people out to the private sector and make this system work,” declares Gayle Wilson. “I don’t think we can handle the majority of people without a Blue Ridge. I just don’t think there’s going to be that many psychiatrists willing to take people who can’t afford to pay their fees.”

Thanks to its size and ability to shift funds where needed, the Blue Ridge Center is able to offer services on a sliding-scale to folks who don’t qualify for Medicaid, Thompson explains. The gap between what people pay and what services actually cost totaled about $1 million last year in so-called “indigent” care.

“That’s going to disappear,” he notes.

In fact, the planned reforms may well jeopardize the very existence of sliding-scale fees for services, warns Thompson, adding: “Most nongovernmental organizations don’t have the capability to provide sliding-scale.”

And the reform plan’s emphasis on serving the most severely mentally ill also has some people worried about who won’t get care.

“The concerns that we have right now is that people without severe mental illnesses are not going to get the help,” explains Tommy Wilson (Gayle’s husband), who’s active in NAMI Western Carolina and also sits on the Blue Ridge Center’s governing board. “The earlier the treatment, the better they’re going to be instead of letting them suffer for a long time. … The earlier you treat them, the better results you can get out of it.”

Retired psychiatrist Dr. Tom Smith concurs. Scientists are finding that more and more psychological illnesses have a biological basis, notes Smith, an outspoken opponent of the state’s reform plan (see sidebar, Smoke and mirrors?”).

“You actually save a lot of money and a lot of suffering if you treat things early,” he says.

Lane, a speaker at the NAMI forum, agreed, suggesting that the current system is incomplete.

“We know that in the long run, early and good treatment is a lot less expensive than waiting for disaster and attempting to clean it up,” said Lane. “We do see this as a disaster waiting to happen.

Crying on the outside

Kathy Wallace, however, is more concerned about the looming specter of state budget cuts than she is about reform — though she does worry about what fewer psychiatric beds will mean for people facing the sort of problems her son had this spring.

Wallace, who’s the activities director at an Asheville nursing home, says her son, now in his late 20s, stopped taking the medication he’d been on for 14 years. His behavior became increasingly bizarre: After he broke the heater at the mobile home he was living in, he pulled his bed and a broken TV outside, set them on fire to warm himself — and got himself evicted. But even though his family was able to have him involuntarily committed to Broughton three times this spring, the facility refused to hold him for more than two weeks, Wallace reports.

Following his third release, Wallace refused to let her son move in with her and he wound up homeless for a couple of weeks. But it was only after he was arrested back in April on misdemeanor charges (for swearing and verbally threatening an Asheville police officer on Haywood Street) and was put in jail that his situation stabilized, his mother says. Broughton officials said they wouldn’t readmit him, and Wallace refused to post his $500 bail.

“To me, it was a good thing they kept him, because he had no place to go and the hospital wouldn’t take him,” Wallace reports.

So he spent the next 39 days in the Buncombe County Detention Center awaiting trial. By this time, says Wallace, her son was once again willing to take his meds — arranged through the Blue Ridge Center. He pleaded guilty to disorderly conduct and communicating threats and was released in May, court records show. Now he’s living with his mother again and is on a waiting list to get into Mountainhouse.

“I’m just concerned that a lot of people — because of lack of services — are going to be homeless and up in jail for the same reason” as her son, worries Wallace.

She still shakes her head over the irony of the situation.

“Dorothea Dix crusaded to get the mentally ill out of prisons and get hospitals for them,” Wallace declares. “And here we’ve reversed it completely. Her work has just gone down the drain.”

Flaminio says she’s well aware of citizen concerns about the upcoming changes.

“That people are anxious is completely logical,” notes Flaminio. “On the other hand, we have to move forward.”

Thompson concedes that it isn’t clear how the new system would handle a situation like the one the Wallaces were facing with their son. With the focus on private providers, reform will emphasize choice rather than comprehensiveness of services, notes Thompson. The state’s theory, he says, is that providing more choice will lead to better services in the long run.

“In some parts of the state that may be true,” Thompson reflects, adding, “That may not be true everywhere … especially in rural areas.”

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