"What ever happened to the mental health lobby?" Sen. Jack Schaffer (R-32, Cary) asked advocates for the mentally ill at a Senate appropriations committee hearing June 4. "I don't see the mental health advocacy groups advocating for mental health. I haven't seen them here in the last five or six years." Three weeks later more than 1,000 clients, parents and workers rallied on the Capitol steps for a tax hike and more money. And Schaffer became chief advocate, eventually convincing legislators to add $8 million for services to the mentally ill and developmentally disabled.

Problems remain. The state's institutions have been found wanting by the federal government. Services have been found lacking by the League of Women Voters of Illinois (LWV) and by a gubernatorial task force. And money is short.

One group that could emerge as a chief lobbyist for the mentally ill is the Citizens Council on Mental Health and Developmental Disabilities. It is one of seven councils created in 1985 under the umbrella of the legislature's Citizens Assembly. Enabling legislation charges the council with reviewing all plans and policies of the Department of Mental Health and Developmental Disabilities, monitoring delivery of mental health services and studying the need for additional laws. Its exact role in the legislative arena, however, is not yet defined. Its goal, in the view of Sen. Richard F. Kelly Jr. (D-39, Hazel Crest), who cochairs the council with Rep. Myron J. Olson (R-70, Dixon), is "to try to obtain the best quality of care for the mentally ill and developmentally disabled citizens of the state as we can." That's a big job for the eight legislative and eight public members of the council.

There is little dispute that the state's mental health system is a mess. The LWV report issued in December says that "the mental health system is not a system at all. It is a patchwork of state facilities and local programs varying in quality. People with serious mental illnesses have great difficulty in getting needed services because of the nature of their illnesses, the lack of resources and poor coordination of services." The report of Gov. James R. Thompson's Task Force on the Future of Mental Health in Illinois echoed that verdict a month later, concluding that "we do not have and desperately need a truly integrated system of comprehensive services for the mentally disabled."

The citizens council itself heard horror stories about state institutions at a June 8 hearing on patient abuse and neglect. Dr. Ronald Davidson, associate clinical director of the Illinois State Psychiatric Institute, told the eight (out of 16) members present that patients are not receiving treatment to which they are constitutionally entitled. He said he found a "pattern of negligent and institutional indifference." Davidson compared Illinois to

Alabama, where the federal courts threatened to put the state mental health system under a master, who in essence would administer the department for the federal court and could seize and sell state property to provide the money to run the system. After hearing the testimony the council moved — sort of — to urge more funding for mental health. A resolution requested by Roberta Lynch, a council member and public policy director for the American Federation of State, County and Municipal Employees (AFSCME), was sent to the four legislative leaders on June 29. It asked "the members of the Eighty-Fifth General Assembly of the State of Illinois to consider in their deliberations the level of funding proposed by the Governor consistent with the need to provide adequate resources in order to attain and maintain the quality of care necessary to the mentally ill and developmentally disabled population in Illinois." As an advocate and a forum for interested citizens, the council has proved successful in its first year, Sen. Kelly believes. "We're proving our worth," he says. Rep. Olson agrees. He believes the council is now defining its role as it gives the General Assembly input on issues. "We'll play a more significant role as time goes on," Olson says. Other legislator members are also optimistic about the council's future. Rep. Tom Ryder (R-97, Jerseyville) thinks that "the council has the ability to bring together those interested to look at [the issues] in nonpartisan terms."

AFSCME's Lynch would like it to become more active. "Ideally," she says, "the council has a positive role to play in overseeing and evaluating the status of programs for the mentally ill and the mentally retarded in the state." What the council eventually accomplishes will depend on the commitment and agreement of its members, Lynch says.

In its first year, the council tended to listen more than to act. It learned of service concerns through committee and subcommittee hearings and studied both the LWV report and the findings of the governor's task force. The council also introduced legislation to address problems it identified: homelessness among the mentally ill, abuse and neglect in state institutions and lack of services for children in public school special education programs who "age out" of those programs when they reach 21 (also see "Compassion for young, retarded adults " p. 51).

Underlying everything is the problem of money. Both the LWV and the task force say funding is inadequate. The LWV reports that "although Illinois ranks 9th in per capita income, it is 38th in the nation in funding mental health services. Also 28 states spend a higher percentage of their mental health budgets on community programs." In addition the LWV says that community programs receive less than expected, while the cost of hospital care for mental health services has risen dramatically since 1960. Patients discharged from state facilities find few community services, and often are readmitted to receive care.

Lack of funding also causes staff problems. According to the LWV report, "Budget cuts have led to understaffing. Caseloads are so large that staff members are not able to develop the kind of relationship with patients necessary for successful treatment. Staff tension at state institutions [administered by the Department of Mental Health and Developmental Disabilities], where mental health staff traditionally work long hours at low pay, causes high turnover and may lead to increased patient abuse," the report says. There is a need for training on how to deal with problem patients.

The governor's task force agrees that staff problems parallel funding problems. It says that state programs often lack qualified professionals to address specific needs, and it recommends increased funding. Not only should salaries be improved, it says that more staff should be added to increase the staff-to-patient ratio. The task force report states that "after Medicaid reimbursement, the state is spending approximately the same net nominal amount on the developmentally disabled in State Facilities as it did in 1977." And after factoring in inflation, the task force says per resident outlay declined from $15,368 in 1977 to $11,661 in 1986.

The critical need for dollars prompted Sen. Kelly to question Gov. Thompson during the Senate Committee of the Whole held May 5. "I'm concerned under the budget and the tax request that there is not enough being diverted to [mental health]," Kelly said. Thompson said he agreed totally: "Indeed the task force that I appointed told me that in their view there was an urgent need for about [a] $140 million dollar increase in the mental health budget this year. I budgeted $62 [million], and over the long haul their estimate of long-term need was some $300-600 million higher."

Thompson used the threat of a federal takeover of the mental health system as an argument for a tax hike this year. Taxes did not increase, but the Department of Mental Health and Developmental Disabilities was singled out by the legislature and Thompson to receive more funds. But few thought there was enough money. Jan Holcomb, president of the Mental Health Association in Illinois, disputed Thompson's contention that his July 20 budget cuts protected mental health: "First of all, it implies that a system of effective care and treatment exists. It does not. Secondly, it implies protection — that persons in our state-run facilities are housed in a safe and humane environment. They are not." Thompson's response to Holcomb's charges, "They're largely true."

The lawsuit he worried about may be coming anyway. The Illinois Association for Retarded Citizens (ARC) is considering class action suits to compel spending initiatives for the developmentally disabled. Such suits have been successful in other states. "It may take five to eight years, but we'll start the process this year," says ARC's executive director Don Moss. He says that the fiscal 1988 budget falls short of providing for the needs of the retarded.

All these problems provide full agendas for the Citizens Council on Mental Health and Developmental Disabilities. Members want to improve services, but their effort is further complicated by differing views on the proper role of the council. Some want it to address the question of funding and other tough issues as was done by its predecessor, the Commission on Mental Health and Developmental Disabilities, which was abolished in 1985. Others believe it should not be a re-creation of the old commission.

Rep. Olson believes the council is designed to take the place of the commission while costing less. "We're getting as much bang for the buck as we used to," he explains.

Rep. Ryder is among those who think the council will not and should not replace the commission. He sponsored the legislation that abolished the commissions. Unlike the former commissions, the councils are submerged under the umbrella of the Citizens Assembly which provides staffing and coordination for each council. The Citizens Assembly consists of all cochairs of the councils with an executive director appointed by the four legislative leaders. The councils rely on staff of the Assembly; council members are appointed by the leaders.

Ann Kiley, director of the Department of Mental Health and Developmental Disabilities, was sorry to see the commission go. She considered it a strong agent for state policy changes. But she believes the council has that same potential. "We haven't seen what the citizens council can do yet," she says. The council will select areas it wants to be a change-factor in." Kiley admires the council's initiative in visiting sites and holding hearings, actions she considers to be nontraditional.

ARC's Moss believes that the former commission should not have been eliminated. "It's very difficult to replace it with a voluntary group and still maintain the same effect," he says. "It's our hope that the legislators on the council will be able to introduce legislation to improve services, but there's certainly not as many legislators as on the old commission, and there just isn't the amount of clout." Nevertheless, his group hopes the council can develop into something like the commission.

Sen. Schaffer, chair of the old Commission on Mental Health and Developmental Disabilities, says the council cannot replace the commission even if it wants to. He likens the new councils to "wailing walls" where interested citizens go to wail about problems within the state, but legislators for the most part can ignore those complaints. The commission had great impact; little if any legislation relating to mental health moved without going through the commission, says Schaffer, who credits its highly skilled, nonpartisan staff for its success. In his opinion, the legislators and citizen members on the current council can't do the work with the kind of staffing they have now.

Council member Robert Lambourn agrees. More staff is necessary, he believes, to move recommendations through the legislature and back to the management level. Others don't see the council in terms of the commission. David Stover, executive director of Illinois Association of Rehabilitation Facilities, believes that the council shouldn't be so involved in studying what the system currently is, but should take a leadership role in long-range planning. "That would be a novel approach in this state," he adds. He remains optimistic because, unlike departments or the administration, the council is not tied to either a tax program or a specific issue, and has the freedom to look at longer range issues.

The Mental Health Association in Illinois did not work with the council very much this year, but executive director Diana Nelson expects them to work together in the future. She is optimistic about groups that bring legislators together with interested citizens, and she believes that the council could be a valuable storehouse for statistical information. The council could also be an advocate for state-mandated services, a goal of the association.

Council members believe that the General Assembly has a soft spot for for those who can't fend for themselves, and that includes both the mentally ill and the developmentally disabled. As Rep. Olson puts it, he doesn't know a single legislator who'd say "Bah Humbug" to their problems. Sen. Kelly says. "There's a lot to be done. But with commitment and quality of people in Illinois . . . we're going to help Illinois get back to being a leading state in mental health." But the problems in the mental health system will not go away on their own. The mental health lobby came to life in June. Even Schaffer acknowledged they did a "pretty good job." But the funding is still a long way from what advocates for the mentally ill and the administration say is needed.

Deborah L. Gertz worked as a Public Affairs Reporting intern for Illinois Issues during the spring legislative session. She is now regional reporter for the Freeport Journal-Standard.