The reality of change

Dyson, 40, and Rose Sutton, 50, both of Haywood County, found out about State Plan 2002 while waiting to see their therapists at Smoky Mountain. Both women are bipolar, a disease that causes them to swing from manic episodes to extreme depression.

“I’ve been diagnosed for 10 years now,” Dyson said. “It’s normally controlled through medication, but yet it is a daily struggle, and usually I smile through the pain.”

Since being diagnosed, Dyson estimates she has attempted suicide more than eight times. The last time, she ended up in a coma.

Dyson and Sutton met a few weeks ago when they both happened to be hospitalized in Hickory on the same day and ended up sharing a room together. The new state plan was a mutual concern for both of them.

“When I first heard about it I was upset and angry; I was totally against it,” Dyson said. “My biggest concern is losing my therapist. Once you get used to a therapist, it is really hard to trust a new one. I won’t just talk to anyone.”

Advocates say clients like Dyson and Sutton will benefit from a system that keeps them closer to home, gives them more options and input into their treatment, and allows their families and other community resources to be a more integral part of their care.

The road to reform

According to Tom McDevitt, a co-area director with SMC, the seeds of this reform movement can be traced back three or four years. The community mental health system, which was created in 1965 when North Carolina adopted its first comprehensive mental health plan and had not had any significant reform in the last 30 years, came under attack on a number of fronts, he said.

“It was under siege for a number of reasons by angry consumers, service providers and legislators and most of this was vented on very specific programs that weren’t doing as good a job as they could have done,” McDevitt said.

Some of those problems included:

° A state system that relied too heavily on institutional care, even though federal legislation (The Olmstead Act) required services in local communities.

° Too many area mental health programs.

° When compared to each other, there were significant differences in how area programs delivered services, how patients and families accessed the programs, and quality and accountability of the programs.

° Changing approaches in how to best treat patients.

° An economic downturn that has made healthcare costs one of the most pressing issues.

McDevitt said some of the economic pressures included healthcare expenses that have outpaced inflation by 6 percent annually; state Medicaid expenses that doubled between 1993 and 2000; and reimbursement methods/rates that were changing.

Those pressures weren’t the only financial problems. The mental health system also experienced a decline in legislative support and budget allocations for much of the 1990s.

As a result of these factors, the General Assembly spent about $600,000 to hire PCG, a public consulting firm, to convene a lengthy study of the mental health system.

“The study came up with various findings, including that there needed to be reform of the overall system, starting at the state level,” McDevitt said. “One of the major findings was that the state spends a vastly disproportional amount of money in its system of state institutions versus community systems so that area programs like Smoky aren’t really given the resources necessary to fully respond the way it would want to. The state has a lot of money tied up in bricks and mortar at places like Broughton, the Western Carolina Centers, and equivalent institutions across the state.”

The PCG study also led to the creation of House Bill 381, sponsored in part by Asheville Sen. Steve Metcalf, which became law Oct. 15, 2001. The law mandates reform of the mental health system and prompted the creation of State Plan 2002.

The key elements of the reform bill include:

° Reducing the number of area mental health programs from its current 38 to no more than 20 by September 2004;

° Requiring each area authority or county program to contract with qualified public or private service providers and agencies to carry out mental health services.

° Requiring each area or county program to develop a local business plan to show how services will be provided and to address access, availability of other qualified providers, consumer choice and fair competition.

Each area program that remains will become a Local Management Entity (LME), responsible for administering public policy and for creating a network of service providers and other resources, both paid and volunteer, to create a community-based system of care.

An important goal of reform, McDevitt said, is to prevent the unnecessary use of state institutions. Toward that end, SMC will seek to divert state hospitalizations by re-tooling emergency services in each community and by creating other services. Another cornerstone of the reform is to standardize procedures so that people throughout the state will be able to enter and leave publicly funded services, supports and treatments in the same way.

Another important part of reform, McDevitt said, is increasing clients’ choice in treatment.

“The cornerstone of reform is consumer choice,” he said. “We want to make sure consumers have the ability, if they don’t like who they choose, if they don’t think the therapy is desirable, they can go back to the LME and say who else is providing services in my treatment plan. Eventually there will be provider report cards and consumers can rate their providers.”

With more services being generated in the community, it will be easier for families and more members of a support network to be involved in caring for the client, McDevitt said.

Local governments across the state were charged with deciding whether to take over responsibility for mental health and substance abuse treatment themselves or contracting with another agency to function as the LME. Each of the seven counties served by Smoky Mountain elected to name the agency as the LME.

The LME will also be charged with overseeing financial resources and assuring that the people with the most severe disabilities receive treatment. The reform plan narrows the definition of whose treatment will be covered by public funding. Clients who fit into “target populations” can continue to have the cost of their treatment covered by the state. Those who don’t fit into the target populations will have to seek other ways of paying.

The plan will direct most services, supports and treatments toward those target populations who are deemed to be the most disabled and in greatest need. The target populations include:

° Adults who have multiple diagnosis; are homeless, mentally ill, mentally ill and in the criminal justice system, elderly and deaf mentally ill.

° Children with severe emotional and behavioral problems (at risk for out of home placement, multi-agency involved).

° Those with long-term developmental disabilities.

° A ‘laundry list’ of substance abuse problems..

° Persons with co-occurring diagnosis.

At a public hearing Oct. 2 in Macon County, McDevitt said their earliest indications suggest that about 13 percent of the clients now being served will fall outside of the target populations. Most of those clients have substance abuse problems, he said.

Providers, advocates react

It is these two pieces of State Plan 2002 — reducing the number of clients covered and privatizing treatment services — that are creating the most controversy.

Martha Teater, a private psychologist in Haywood County for the last 12 years, said she is most concerned about the people who need mental health and substance abuse services who won’t fit into the target populations.

“Medicaid will only cover it if it falls into the target populations and you have to be pretty severely affected,” she said. “But if you are an adult alcoholic or crack addict, or you’re an adult who’s depressed or who’s marriage is breaking up, a lot of these adults won’t be covered and they have no money for private counseling.”

The biggest criticism is coming from a state mental health patient and employee advocacy group formed around 1996. The group, Friends of Mental Health, is made up of members of both private and public mental healthcare systems.

“This plan is going to ration care,” said Dr. Tom Smith, of Asheville. Smith is a retired psychiatrist who now serves as a spokesperson for Friends of Mental Health. He has worked in North Carolina’s public mental health system for more than 35 years in state hospitals, area mental health centers, including Smoky Mountain, and in private practice. “If you don’t meet specific target populations, you simply are not going to be chosen to be treated, and that’s going to leave out a lot more people.”

Smith also is concerned that State Plan 2002 doesn’t take into consideration the special needs of people needing mental health services.

“I think we have a lot of people with multiple problems,” Smith said. “They may be depressed, they may feel so bad that they get on drugs and alcohol, self-medicating to try and get a little bit of relief. A pretty high percentage of these people are so miserable they will try anything to get some relief. I used to be very judgmental about that, but I’m not anymore. I realize how intensely some of them suffer, it’s just unbelievable.”

As a result of their suffering, Smith said, patients can often be less than reliable.

“I have treated thousands of people and some of the problems you’re going to run into is they frequently don’t keep their appointments,” he said. “If you don’t show up, you’ve got a gap and the provider doesn’t get paid. If you’ve got six gaps during the day on an eight-hour day, then the provider has a problem.”

Smith also believes the reform plan may open the door for numerous unscrupulous service providers to come into the region whose only interest is making money. The plan calls for hundreds of state hospital beds to be closed, and Smith said he is particularly worried that a shortage of beds will open the door for chains of group care homes that capitalize on the need for beds but offer very poor patient care.

“We’ve been contracting out to these people for years,” he said. “I happened to discover one of the contractors was hiring providers for something like $30 an hour and charging Medicaid $110 an hour and keeping the difference. They were doing practically nothing but scooping in the profits.”

Smith said hardly a week goes by when he doesn’t receive a call from a psychiatrist somewhere in the country who wants to open a clinic in Western North Carolina and wants him to be a part of it.

“They want me to go out here and build one of these 3-P clinics, that’s what I call them,” he said. “They give the patient a pill, a platitude and a pat on the back, but they rake in the profit.”

McDevitt said he appreciates many of the concerns Friends of Mental Health are raising.

“I respect Dr. Smith and his colleagues and what they are trying to do,” McDevitt said. “They are actually raising many concerns that are difficult for area directors to raise because, frankly, we have a mandate, the law says we have to do this. We are committed to trying to improve the system through reform and what Friends of Mental Health is doing is taking the state to task for the details that are missing about the plan and they need to do that. We keep pressing and pressing on how this is going to be funded. We’ve been asking from day one for that and we’ve developed a model of how we will do it, but nobody knows if there will be adequate money to enable Smoky (Mountain Center) to be better positioned to meet the community’s needs or are we going to have restricted resources.”

McDevitt knows it will be a big challenge to develop a private provider network in this region that covers the bases now covered by the state.

“We have the distinction of having one of the biggest land regions in the state, but with the lowest population,” he said. “Rural areas are going to be very challenged to have that network.”

McDevitt acknowledges that the new plan could open the door to more unscrupulous service providers, but he said Smoky Mountain Center will have standards in place and will be able to hold providers accountable for the kind of care they provide. In addition, he said, the present system has not been immune to similar types of abuse.

“Are we going to have people with ulterior motives? Definitely,” McDevitt said. “We do right now. We have people we are suspect of that are in business as a not-for-profit organization, hypothetically, but they are not not for profit. The CEO makes as much as he needs to make to drain the profits out of the place and you end up having a CEO who makes $110,000 running an $800,000 agency. We have some of those here, and they’re going to be gone. They are going to be out of business, they are not going to succeed if they don’t let the surplus fund their business.”

Moving forward

For the next several months, SMC is playing the dual role of providing mental health and substance abuse programs while at the same time shepherding along the process of switching to the new system. By January 2003, SMC is required to submit its local business plan detailing how the state plan will work in this region. In the meantime, SMC will be working to develop the provider network it will be required to supervise, while at the same time divesting itself of all of its treatment programs.

That means an estimated 50 to 80 providers who are now employees of SMC will lose their jobs and benefits, but most will have the option of becoming a private contractor to do the services they now do, and maybe some others. Another option will be for some private providers to form a new entity to provide certain services, much like doctors form a practice to provide medical services.

A third possibility may be to become part of a new entity called Mountain Area Support Services. Smoky Mountain Center formed the agency about six months ago to be a place where private providers could work under one umbrella.

“MASS right now is more or less a leasing agency, like Manpower,” McDevitt said. “They employ staff they lease to Smoky Mountain Center. What we are going to be doing over the next year and a half is divesting ourselves of all those programs, those licenses, and the management and treatment staff. When we do that, those people who are in MASS right now that are in school systems, in the group homes, in day programs and there is a sprinkling of private psychologists and social workers, they will actually provide those services through MASS.”

McDevitt is currently serving as director of MASS, but it will eventually hire its own director. Those service providers working through MASS have a salary and benefits, although it is not at the same level of what they had at SMC.

The transitions underway are creating a lot of questions among area service providers. In order to meet the needs of those clients who will no longer fit in the target populations, there is an expectation that service providers will be willing to see them on a sliding scale. In meetings he’s had with service providers, McDevitt said he had been encouraged by the number of providers who said they would be willing to do that.

But some providers say a lot of clients are already being seen on a sliding scale and they’re not sure how much more they can accept and survive themselves. Teater has already lost about 12 patients because she is no longer able to accept Medicaid as a private provider. She has referred those patients to other providers and is seeing a few of them at no charge.

“The private providers I’m involved with, most already do a little sliding scale or already feel like they are giving away as much as they can,” she said. “We’ve got overhead and other expenses. I get together for lunch with some of the private providers and most are saying they can’t afford to do that.”

Joann Womack, a Franklin therapist who works mainly with adults and teenagers, is concerned about the likely loss of freedom service providers will have in deciding how to best serve their patients.

“I think this is coming from the state, but the way I understand it, Smoky Mountain does the treatment plan,” she said. “Smoky will specify what kind of service the client can receive.”

Womack said an important part of her practice has been using new techniques that have not yet reached the mainstream.

“I think the therapist will be told to do more group treatment with these folks,” she said. “The state is putting everybody into one basket because that’s a cheaper way to serve people.”

Dan Lane, a retired college professor living in Lake Junaluska who has been active in mental health issues for years, is cautiously hopeful that the new state plan will lead to better care.

“The strengths of this plan in our region is that a number of these agencies have been working together for a long time and that is not going to change,” Lane said. “The configuration of how they work together may change. The biggest defect is the funding and the change in target populations. Smoky Mountain is having to plan conservatively because they don’t know what is going to be available.”

Lane said he is concerned about how area private providers will react to the possibilities now before them.

“Will current providers that are a part of Smoky still be around to be part of the MASS organization?” he said. “If people are willing to move somewhere else where conditions are better, that may be a problem. I think a lot of people will want to stay here because of the area, but if the differential is too great, they won’t.”

Another part of the new plan will be the formation of a Consumer and Family Advocacy Committee to help develop a process for resolving complaints about the system; monitor the system’s performance and insure that review are coordinated and recommendations implemented. Lane and his wife Betty have been asked to chair that committee. Not only have the Lanes been active in the Western North Carolina chapter of the National Alliance for the Mentally Ill, but they also are the parents of an adult daughter who suffers from schizophrenia.

Lane said they have seen North Carolina’s service system at its worst and they are hopeful that this reform plan will move it to better days.

“I think the failure of people to put a diagnosis on our daughter was a big problem,” Lane said. “She was in several crisis when her next appointment was still two weeks off and it seemed like nobody wanted to do anything to help her. It seemed like it was dumped back in our lap and it reached a point where she got worse and she was hospitalized. It would have been wonderful if there had been some means of early intervention, instead of late intervention because the information we’re getting now is that the longer you wait, the more damage you do to a person’s brain. If the community owns these people as their own, not like they’re derelicts that you have got to get rid of, if you treat them like somebody who has cancer — that’s the hope.”

Clients like Dyson and Sutton say they are willing to share that hope, at least up to a point. Both women say having more involvement in their care and keeping more services local is good, but that significant changes are very difficult for people with mental illness to make. Both women attended a public hearing in Haywood County Oct. 24, one of several in recent months in the counties SMC serves, to share their concerns about the plan. Both came away feeling a little better about things.

“I think it is a good thing for there to be more in the community,” Sutton said. “Some people can’t get help because it is so far away and it is a burden on their family to try and get there.”

Dyson hopes there will be an opportunity for more local support groups and she would also to take an active role as an educator, to tell people her experience and to promote good mental health.

“There is such a stigma attached to it,” she said. “I would like people to see that we can be involved in the community and they don’t have to be scared of us. We are your mothers, fathers, sisters and brothers. It is OK for us to maybe go to schools and talk, or to church groups.”

Dyson said she would like to talk to people about being a suicide survivor.

“I’m ashamed I did it, but I’m not ashamed I’m a survivor,” she said. “I know I’ll never try to kill myself again because I feel God has a plan for me.”

Dyson even likes the idea that the state plan will allow her to take a more active role in her treatment. But she’s clear that she doesn’t want that freedom if it means having to change therapists.

“If I lost her, I’d be devastated,” she said. “Right now, I’d have to say no.”

(David Teague is a free-lance writer and editor living in Waynesville.)