Directly across the street from the sprawling Illinois governor's mansion in Springfield sits a shelter of considerably less splendor: Helping Hands is an oasis for homeless people in the capital city. Working as a counselor there, Paulette Roberts has received phone calls from staff members at nearby McFarland Mental Health Center who wanted to let her know certain people were being released from the hospital. She appreciated the notice — however short — that some newly released patients likely would be making their way to the shelter's doorstep. But like many people, she worries about a mental health system that admits it is releasing some people to the streets. "I've had patients show up here, but this isn't the environment for them," Roberts said as she surveyed the shelter's single large room, crowded with couches and shelves, that serves as a common sleeping, social and eating area. Helping Hands has just one bathroom and no showers for the 10 to 20 people who stay there each night. "They're packed in like sardines here," she said. "They have special needs that need to be met. Before they leave [a state mental health institution], I think they should go to a more transitional environment." Roberts, who estimates that 30 to 35

Photo by Showcase Photography/Terry Farmer Jess McDonald, director, Illinois Department of Mental Health and Developmental Disabilities

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percent of the homeless clients she serves suffer from mental illness, said she sees a distinct need for more transitional housing for the mentally ill. "They need a place to go — a place where they don't go straight to the street."

She suggests halfway house settings or supervised apartments as examples of appropriate types of housing that mix supervision with some degree of independence. "I'm not suggesting mental health patients can't be independent," Roberts said. "They should be living as independently as possible. But they might need help becoming independent, like with filling out Public Aid forms. When they're homeless, it makes it doubly hard to get things done that need to [be done]."

Among the first to agree with her is Jess McDonald, the man in charge of providing Illinoisans with mental health care and treatment. As director of the state's Department of Mental Health and Developmental Disabilities (DMHDD), he wants to change the state's mental health system so that situations like those described by Roberts are avoided.

"That doesn't sound like good discharge policy," McDonald said of Roberts' experiences. He estimates there are 20,000 mentally ill homeless people across the state. "It's unusual to discharge someone to no place. The discharge [from a state institution] should incorporate housing. The difficulty with the mental health system is that it's not a housing system."

'It's unusual to discharge someone to no place. The discharge [from a state institution] should incorporate housing. The difficulty with the mental health system is that it's not a housing system'

Since his appointment by Gov. Jim Edgar in February of 1992, McDonald has focused on trying to retool mental health care in Illinois. To do so, he must coordinate disparate ideas about how mentally ill people should be treated. Some of his priorities include intensifying pre-treatment screenings and evaluations and smoothing links between mental hospitals and less restrictive services such as outpatient counseling so that fewer people fall through the proverbial cracks in the system. For example, one of his department's legislative initiatives this year would have allocated $2 million for housing with supportive services for clients. "If you discharge people to the street, you increase their chances of coming back into the system," he said.

Referring to the discharge cases described above, McDonald said the people who called Roberts from McFarland may have known the habits of the people being released and felt it was only realistic to warn local shelters of clients likely to return. "Sometimes the staff will find housing for a client and a person chooses not to use it."

McDonald doesn't sound as though he is making excuses when explaining possible reasons for those phone calls to the homeless shelter; indeed, he admits there are far-reaching problems with the state's treatment of people in Illinois who suffer from mental illnesses. Just about everyone serving these clients has good intentions, but money and staff shortages — combined with the lack of one agreed upon, absolutely best way to treat the mentally ill — gum up the process. When McDonald was appointed to his position by Gov. Jim Edgar in February 1992, he inherited a system that had become famous for its level of deterioration. One example: A surprise inspection of Chicago-Read Mental Health Center in late 1991 by Dr. Ronald H. Davidson, public policy director of the Mental Health Association of Illinois, captured media attention by uncovering such filthy conditions as walls, floors and furniture smeared with human waste and blood. A subsequent visit showed no improvement, and within weeks McDonald's predecessor, William Murphy, announced he would take early retirement.

A more recent surprise visit by Davidson and DMHDD Inspector General Cathleen J. (known as C.J.) Dombrowski to Chicago-Read in February found hospital workers sleeping on the job; a few weeks later, a patient at Tinley Park Mental Health Center was able to commit suicide while on "close observation" status because staff on duty who were supposed to monitor him reportedly were asleep.

Also hanging over the department are two lawsuits filed by the American Civil Liberties Union (ACLU). In August, the class action suit, KL vs. Edgar, was filed in federal court on behalf of 3,300 patients with mental illness living in the 12 state-operated mental health facilities. Among the allegations: the facilities are not sanitary; they fail to provide adequate medical care; the only psychiatric treatment provided is antipsychotic medication; and mechanical and chemical restraints are overused. A previous suit, A.N. vs. Kiley, focuses on the department's services to children. Attempts to negotiate an overall consent decree settlement are under way between ACLU and DMHDD attorneys. "Taken together, both of these suits have the potential for forcing

A more recent surprise visit by Davidson and DMHDD Inspector General Cathleen J. (known as C.J.) Dombrowski to Chicago-Read in February found hospital workers sleeping on the job . . .

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not only sweeping changes in the DMHDD system but in the way Illinois funds mental health services for the next decade," Davidson said.

Figure 1. Spending on mental health services by Illinois Department of Mental Health and Developmental Disabilities, fiscal years 1982-1993 (fiscal 1994 represents estimates based on budget request), broken down by funding of state mental health facilities, community programs, and compliance with regulations mandating removal of mentally ill patients from nursing homes

In May 1992, Edgar made clear his feelings on the direction the department should be taking when he issued a directive stating that "something must be done to assure movement from an institutional-based system to a community-based system." In response, McDonald and an advisory panel submitted a reform plan this March that would move toward serving people in community settings, such as outpatient care facilities and transitional housing, rather than in state mental hospitals.

The plan calls for "Local Area Networks," or LANs, to manage mental health care within designated geographic areas. A top priority would be a more careful screening of patients prior to admission to a hospital, which, McDonald said, would help cut down unnecessary hospitalization and reduce the nearly 12,000 annual cases in which people show up at a hospital and are turned away because they don't need such intense treatment.

But in mid-May, Frank Anselmo, director of the Illinois Association of Community Mental Health Agencies, said Edgar's proposed budget didn't reflect commitment to community care. The recommended $467.6 million for community services was 41.3 percent of the 1994 DMHDD budget; two years ago, Edgar proposed 41.7 percent of the DMHDD budget for such services.

"We have to set up a real system," he said. "There are models for places like that in the state; they start with the assumption that everyone needs a safe place to sleep and live — they need a roof over their head. You need to make sure they're connected with services. We have to help them have a sense of hope, and the system isn't built around that now."

McDonald said the plans he envisions for the state would fit in well with what he perceives occurring on a national level. "National health care reform is going to look at how to provide care for all, and I expect they'll give serious consideration to mental health as well," he said. "It looks like everyone will get a limited form of coverage, with states left with the responsibility of providing for individuals with continuing mental health needs."

But worries remain about McDonald's reform plan for Illinois mental health services. Roberta Lynch, director of public policy for the American Federation of State, County and Municipal Employees (AFSCME), said some of her concerns are rooted in the department's handling of other patient "moves."

Some background: The federal Omnibus Budget Reconciliation Act of 1987 (known as OBRA) placed limits on Medicaid reimbursements for nursing home care of developmentally disabled people. So the state was forced to develop a plan to move these patients into appropriate residential settings. Among the major elements of the plan were Community Integrated Living Arrangements, or CILAs, which featured small group or independent living quarters with supportive services that would change as individuals' needs changed. But the state fell short of its goals for removing patients from nursing homes, prompting a lawsuit filed in 1988 by the Association for Retarded Citizens of Illinois, that charged DMHDD and two other state agencies with failing to comply with the federal government's requirements.

"Despite being faced with this threat [of lost federal dollars], Illinois was unable to keep its 'commitment' to developing community-based services for its citizens with

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mental disabilities," Lynch wrote to the advisory panel that developed the current reform plan. "The failure is a strong indication of the difficulties the department would encounter in trying to implement more radical and far-ranging change."

McDonald remains convinced of the need for a big change in mental health care. "We need unified service systems that have community-based services and allow for a continuum of services," he said. "We want to make sure the care is safe and high quality. I don't think that could happen overnight. But without some sense of direction we won't know where we're going. We can't be starting CILAs one year and then cutting them out the next." He said CILAs are working "fantastically" for DMHDD clients; he expects the agency to be in compliance with OBRA requirements by April of 1994. "There still is some work to be done, but CILAs are a breakthrough in how we serve people."

Also representing a breakthrough for Illinois, said McDonald, is that clear plans finally exist to guide the department's future. Especially exciting to him is the idea that a broad range of people is taking part in hashing out the plans. "Included at the table will be all kinds of stakeholders — consumers, parents, patients who are living full lives with mental illness."

That's a break from past DMHDD policy, he said, which seemed to leave people out of the planning process. "I've always been amazed by that," he said. "Some people are afraid of the outside. It's not unique to this agency; people may feel they lose control. But I feel that if we bring people to the same table, they tend to reach the same conclusion as we do. If they're not at the table, they tend to think we're hiding something. We're trying to use ideas of people invested in the system for years, like the parents and advocates."

That attitude is appreciated by many of those parents, advocates and others who have been seated at the drawing board — a group with a typically long, governmentese-sounding name: "The Mental Health Service System Advisory Council."

"I've always had a fairly friendly but adversarial relationship with the department [of mental health]," said Davidson of the Mental Health Association, a member of the advisory council and former associate clinical director of the Illinois State Psychiatric Institute. "That changed considerably when Jess McDonald came on. I feel very, very supportive of the things he's starting to do."

"He's probably done a pretty good thing," agreed another advisory council member, Dr. Carl Bell, who serves as executive director of the Community Mental Health Council Inc., a nonprofit Chicago-based group of psychiatric facilities. "He's gotten all of the people in the state together to give him input about what needs to happen. Everyone's represented. I guess I'd give him credit as far as opening up the process."

Bell believes that bringing various factions together wasn't just good for those participating, but for McDonald as well. "In a lot of ways it is a very sophisticated, politically savvy kind of a move," Bell said. "You've got all the constituents on the front line: parents, state hospitals children's and adults' interests — everyone's there in the smoke-filled room, but it's no longer smoke-filled. It's the only way everyone would feel safe; otherwise they'd suspect sabotage of their individual interests. This is an open, democratic process. Plus, it builds a constituency to argue for what's needed in the end, which is a re-haul of mental health. It gets people involved so that if political clout is needed to generate dollars, you've got people involved and united."

'We must take care of our own patients in our own communities. Every legislator should take a visit to the state hospital. If they did, they wouldn't feel the way they do about closing them'

Even with all the support McDonald has garnered from the mental health community, there remains a huge roadblock for him: opposition by unions of public employees to many elements of the reform plan put together by his advisory council. Put simply, the plan needs approval by the state legislature, where the union holds a great deal of clout.

Henry Bird, vice president of Illinois' Alliance for the Mentally Ill and the father of a son suffering from mental illness, said: "With the strength of the unions, every time you decide to close a hospital, legislators only think in terms of jobs, not what's good for the mentally ill. Some of the legislators see reform as a threat to jobs. We have a very simple message: We must take care of our own patients in our own communities. Every legislator should take a visit to the state hospital. If they did, they wouldn't feel the way they do about closing them."

McDonald said he understands employees' worries about future job losses. "The union's afraid we want to go from the number of employees we have now to zero," he said. "For them, these are jobs, major employers in some communities. And I'm not disrespectful of that; these state hospitals were placed around the state for economic development, like prisons. And just as when corporations are downsizing, there's always the question: 'Is there an obligation to the workforce?' I think the first obligation is to clients. We need to give as many alternatives to state hospitalization as possible to serve them well."

McDonald said he disagrees with AFSCME's contentions but feels empathetic toward union members. "They have concerns about some sort of secret plan to close every

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institution — that's hogwash. But they live in fear because that has happened in other states. They see every reduction in the number of beds as closure, and that's too bad because it's not the case — at least not in my mind."

Don Shumway, president of the National Association of State Mental Health Program Directors, is one person who feels he has walked in McDonald's shoes. As director of the New Hampshire state mental health department for the past eight years, he has participated in his state's transition from a mental health system served by state hospital beds to one served by community services. "Oh, there were fights," he said, recalling battles between public employee unions and reformers. "But there is life after the fights. It's all part of public policy debating, and it's not necessarily unhealthy in the end. And what we've seen is that these patients want to and need to and should be part of their communities. They can contribute a great deal to the places they live."

During a recent meeting, McDonald asked the directors of Illinois' public mental health hospitals how many of them would want their own sons or daughters served in those facilities. "Not one person raised their hand," he said. "If we would not have our own child served here, we're not doing our job."

Figure 2. Mental health admissions per 100 beds, average length of stay in days, 1935-1992

That line of thinking has spurred the director's strong support of what has become a highly publicized, controversial element of mental health program monitoring: impromptu inspections of mental health institutions by Dombrowski. "I think what C.J. is doing is absolutely critical," McDonald said. "The unions would say I'm devastating morale. But if I can't prove we're willing to hold ourselves accountable, we should not be in this business. "There's great fear of using this information against people," McDonald said. "But someone will find out eventually what's going on inside the facilities — and it's better that we find out ourselves. I want to make sure the people across the street [in the Statehouse] know we can do this right. With C.J.'s visits, we will improve care by increasing oversight and involvement. If one facility in any part of the state is not doing their job very well, the entire system is painted by the same broad brush. The union's concerned about our approach, but I'm not and the governor's not." (Edgar's support was evidenced by the fact that he created a similar inspector general position in late April for the troubled Illinois Department of Children and Family Services.)

In 1990, a report by the National Alliance for the Mentally Ill and the Public Citizen Health Research Group called Illinois "one of the stingiest states in the nation when it comes to spending on services to people with serious mental illness. The state ranks 12th in the nation in per capita income, yet it is 44th in the nation in spending, laying out far less than the national average of $42.11 per capita." Illinois' per capita mental health spending cited in the report was $24.48. "More damaging than the state's unwillingness to fund services," the study continued, "has been the lack of leadership until recently at the state level."

"We're not going to have a perfect system — no state does," McDonald said. "One opportunity in taking this job was the opportunity to try these things. The core of people we have in the department is very good. We don't have regional directors, and only a small centralized staff, but it's a core of very good people. This state gets a lot for the money it puts in. The bottom-line issue is that finally we're giving a sense of direction in terms of systems of care. People start seeing the situation in terms of who wins and who loses, but it ought to be one where everyone wins — especially clients."

It is hard to say whether clients will, in fact, come out the winners — no matter what McDonald tries. "We're very encouraged by the words [of the reform plan]," said Bird. "But we think this is going to be extremely hard to do within Illinois' political system. The director is wonderful, but Jess is not going to be around [indefinitely]. We're hoping he'll last for eight to 10 years, but given Illinois politics, how long will he be around? Will this plan just be put on the shelf as another failed Illinois effort?"

And if it is, will Paulette Roberts again be fielding warning calls that mentally ill people are on their way to the homeless shelter? It's not a scenario she'd like to continue. "Of course [institutions] should be a last resort," she said. "But at least there you just know they're going to eat, be clean and be sheltered." 

16/June 1993/Illinois Issues