By MERLIN A. TABER and STEVE ANDERSON
A turf struggle Community mental health services
MENTAL HEALTH needs in Illinois have changed in the last 20 years, but the state's mechanism for the planning and funding of services has not. The result is a confusing and irrational system in which no state or local agency has a broad mandate for community mental health services. Although state mental hospital populations have decreased over two-thirds since 1963, state hospitals continue to monopolize the budget of the Department of Mental Health and Developmental Disabilities (DMHDD). This was the situation facing the community services and aftercare subcommittee of the Governor's Commission for Revision of the Mental Health Code when it began its work in 1974. The fact that it took the subcommittee three years to develop its proposal testifies to the difficult and controversial nature of its task. From 1960 to 1965, Illinois was a national leader in developing community-based alternatives to state hospital care. During this period the state built six "zone centers" providing regional mental health treatment and authorized local mental health taxes under the 1963 Community Mental Health Act (often referred to by its House bill number as the "708 act"). The first national community health legislation was also passed in the same year. Since 1960, community mental health agencies have grown from a scattering of clinics to over 300 programs, including centers, sheltered workshops, half-way houses and community living facilities. However, these legislative innovations both at the state and federal level have subsequently engendered little more than cosmetic changes. State mental hospitals have survived and grown in cost. The federal Community Mental Health Centers Act of 1963, a Great Society initiative, has succeeded only in providing small grants for mental health centers, without altering the state hospital system. Problem of planning Despite the growth in numbers of community agencies, a rational pattern of community services has not developed in Illinois. The problem is in the state's mechanisms for planning and funding of services. Unlike other large industrial states, no state agency is mandated to assure the provision of a range of non-institutional mental health services. This has resulted in community-based programs which are thinly and unevenly spread, while operation of state mental hospitals consumes most of the $400 million budget alloted to DMHDD. Supporting the status quo, state employee unions have joined with local businessmen to form an effective lobby for protection of hospital budgets at current levels. After discharging large numbers of aged and chronically psychotic patients from state hospitals in the late 1960's, DMHDD began a modest program of subsidies to community agencies. These "community grants" have now reached about $90 million — or between 20 and 25 per cent of the DMHDD budget. Revenue from local taxes authorized by the Community Mental Health Act supplies an additional $10 million for local services, bringing the total amount currently being spent for local mental health services to over $100 million. However, this amount is small relative to the hundreds of thousands of persons receiving service and the wide variety of programs involved. Localities are consequently faced with a difficult choice. They must either impose a local mental health tax or else not offer needed services. Some have chosen to tax themselves; others have not. As a result, whether an individual receives help may be largely dependent on geographic accident rather than need. Community service advocates, such as the associations for local boards and for community provider agencies, have gradually gained in sophistication and ability to counter the state hospital lobby. The fight between these opposing groups has narrowed to an annual struggle to add or subtract a few million dollars to the "community grants" budget of DMHDD. The community advocates have successfully lobbied to raise the "community grants" budget, but the state mental hospital lobby has managed to get budget increases too. The community grants group has also pushed for increased local determination in use of funds.
MERLIN A. TABER and STEVE ANDERSON 22/ July 1978/ Illinois Issues Perplexed by conflicting claims and counterclaims, the General Assembly required in 1974 that DMHDD develop and periodically revise a five-year plan. In its initial five-year plan (which expires in 1980), DMHDD proposed that a significant increase in state funding for local programs should be spread out over many years. Direct grants to hundreds of agencies would be continued, but there would be no block grants to local planning bodies. State institutional facilities would continue at about the same level of operation and would expend the largest share of the department budget. In short, DMHDD proposed to continue its expensive residential program and also to continue its control of community planning. Criticism of plan Critics of the DMHDD Five-Year Plan have raised several objections. First among these is that "the buck stops nowhere." Several groups are authorized to plan and provide community mental health services, but there is no locus of responsibility for doing so. Second, the department appears to be operating a "fiscal shell game." Despite the discharge of most mental patients, DMHDD continues to receive large slate appropriations for hospital-based care of mental patients. Third, the department does nothing to alter the "benign neglect" of psychotic and aged mentally ill. Thousands of seriously mentally ill persons discharged from state hospitals receive no community mental health services. "Community care" for this vulnerable group consists of residence in nursing homes and welfare hotels where mentally ill citizens live with no more social treatment than was available in the old-fashioned mental hospital. The DMHDD defends itself by pointing out that present statutes obligate the department only to inpatient care, that in the past governors have been unwilling to take on the state hospital lobby and that without departmental monitoring, community agencies would screen out the most severely disturbed and retarded individuals. There is more than one way to solve the explosive problem of delivering community mental health services — a problem which has plagued the last four Illinois governors — and caused a great ideal of human suffering. One obvious possibility is decentralizing DMHDD by making the department's local offices centers of planning, funding and monitoring of all mental health services. This approach is appealing because it builds on what has already been accomplished. But decentralization of the department fails to deal with one central problem: the DMHDD would still be dominated by its own expensive facilities.
Another option is to bypass the state system and follow the model favored by the U.S. Department of Health, Education and Welfare. Comprehensive community-based mental health centers (quasi-private corporations) would cover every area of the United States and would be paid for by private and government insurance. Long-term care for those with chronic problems and the developmentally disabled would be handled by state facilities and Medicaid. The federal policy is appealing in that community services would be part of the community health system; the centers would seek out funds and patients for themselves, and a special planning structure would not be needed. Studies show, however, that federally funded centers tend not to serve adolescents, the aged, the retarded or the chronically ill. Furthermore, cost data indicate that high federal requirements lead to high costs. The governor's commission chose the third option of centering responsibility for mental health services in local planning authorities. The reasons for its choice will be presented in the context of the three major issues already identified: locus of responsibility, distribution of funds and quality of service. Lack of leadership The overall problem of mental health service in Illinois seems to be lack of leadership, not lack of resources. We have already seen that about $400 million in state revenues are expended annually by DMHDD. Other resources include state and local organizations concerned with mental health planning, county mental health boards (708 boards), city health departments, sub-regional offices of DMHDD and federally funded community mental health centers. Yet service gaps persist, because no one is responsible for orchestrating services to focus on the most serious problems. The proposal of the governor's commission deals with leadership and planning responsibilities issues in two important ways. First, the proposal would make DMHDD responsible for provision of a wider array of mental health services in all areas of the state. Currently, the department is mandated to offer only institutional care; community services are no one's particular charge. Focus on local authorities The commission did not intend that the department should actually plan and administer community services. Instead, the commission proposed that local governments be authorized to create mental health planning authorities to plan all services affecting residents in their jurisdiction. These "local mental health authorities" would be created by counties, county combinations, Cook County townships, or the City of Chicago. Each local authority would propose an annual plan and budget for mental health and developmental disabilities services in its jurisdiction which the department would approve and fund, subject to budget limitations. The local authority would then administer and monitor the provision of all services. The local authority would not itself provide services to the disturbed and retarded, but would make contracts with local service providers such as mental health clinics, community hospitals, and social agencies. The department would enforce guidelines and standards for local plans. In areas without a local authority the department would be responsible for planning and administering services until one was created. The commission's proposal, then, would authorize funding and guidance to those localities having the capabilities and desire to plan their entire mental health service network. At the same July 1978/Illinois Issues/23 time, the proposed statute assures that areas without local authorities will receive services under supervision of DMHDD. By establishing and consolidating planning responsibility in the local authority, the commission intended to put an end to buck-passing. Persons with mental health needs, as well as other citizens and legislators would all understand the local authority is the place to go with problems relating to mental health. The fiscal problem of local services is this: patients have been discharged to the community, but state tax funds for mental health have stayed in the state institutions. Many financially strapped communities cannot respond to increased demand for services. The distribution of community grants from DMHDD has raised further problems. Communities which place a large proportion of mentally ill persons in state institutions still receive DMHDD grants for community services which are as large as the grants to localities that provide effective services to prevent hospitalization. No general policy exists which would differentially distribute resources in keeping with levels of local need and effort and would encourage the development of outpatient care. Funds from state The governor's commission proposed that the legislative appropriation for direct mental health services be entirely allocated to local mental health authorities on an equitable basis. The local authority allocation would be used both to purchase care for local citizens in state mental institutions and to fund local programs. Under this system, localities which keep their citizens out of state facilities would have the resources available to improve alternative services. On the other hand, those localities which rely on state facilities would have to use their state allocations to pay for these services and would not have as much state money to develop services in the community. In calculating the amount of state funds each local authority would be eligible to receive, the primary factor would be the population size of the area served by the local authority. Poverty levels and the need for new service would also be given some weight. The intent of the governor's commission was that local authorities be given the resources to carry out the extensive responsibilities assigned under the new legislation. The formula is also intended to ensure a more equitable distribution of state mental health resources across Illinois. Community service systems which are effective in preventing hospitalization would be rewarded with adequate funds for continued development. Right to treatment The principle of a "right to treatment" for mental patients has been established by the federal courts in 1971 in the case of Wyatt v. Stickney (325 F. Suppl. 781 (1971), and in 1975 in O'Connor v. Donaldson (442 U.S. 563, 1975). The "right to treatment" doctrine means that people cannot be confined for mental treatment unless they are actually receiving some treatment. This new legal principle protects citizens against custodial detention which is falsely called "treatment." There is not yet any protection for Illinois citizens against the opposite problem — namely, the failure to give treatment to aged, psychotic, alcoholic and other seriously disturbed citizens who are not confined to mental institutions. Thousands of ex-mental patients are still in repressive or custodial situations in communities without adequate social or medical service. The DMHDD is not, apparently, responsible for service to these mentally disturbed persons. Present Illinois law requires the department only to give service and care to those who are in its facilities. To fill this gap in Illinois law and to protect the rights of disturbed citizens, the commission proposed a "case plan requirement" as a means of insuring access to service and follow-up for mentally disturbed citizens. Under this requirement, the local authority would designate some agency as having prime responsibility for every person receiving service. This agency would develop a service plan with the client and would be responsible for following and monitoring the plan to assure the person was always receiving the most appropriate service. Since the local authorities would control funds to guarantee agencies under the proposal, it would be possible for the local authority to enforce adequate performance of the case plan requirement by provider agencies. The intent of the commission was to write into Illinois law a positive assurance of right to service for mentally disturbed citizens of the state. As previously mentioned, the proposal expands the department's responsibility by making it responsible for assuring the provision of all services, not just inpatient care. The case plan requirement is an attempt to take "right to service" one step further, by assuring that applicants do not get lost between agencies, but receive the most appropriate and well-planned services possible.
The commission proposal for "system change," as against minor revisions in the system, ensures that many officials and legislators will view it with suspicion. The new planning powers for communities and local control over state hospital admissions, means that some officials in DM HDD will likely oppose it. There may also be opposition from some community agencies who have been doing well in community grants competition. The commission proposal would change the rules of the game so that all community mental health agencies would have to seek funding from local authorities rather than the DMHDD regional officials with whom they are familiar. Concern for patients Three additional obstacles, identified in commission debates, might prevent adoption of the proposal. First, DMHDD is concerned that groups previously cared for at state mental hospitals will not be accepted by community agencies. Would commission proposals result in more money for community services without any increase in treatment to unattractive chronic patients? Associations representing
24/July 1978/ Illinois Issues mentally disordered or retarded citizens are also fearful that community agencies would only is select the mildly disturbed or borderline retarded. The counter argument raised is that ex- institutional patients are not receiving care under the present system, and it is questionable whether they would receive less care under the proposed system. A second question raised by many observers is whether local governments in Illinois are prepared to take on responsibility for this difficult area of public service. Local government has a poor image in the public mind. Further, local officials may fight this proposal as a thankless impossible task. Opponents of the proposal point with alarm to past failures of local government; defenders of the proposal counter that competence in county and city government is rapidly growing throughout much of the state, and argue that the present state hospital-based system neglects patients and wastes money in any case. Conflict of change Other obstacles to system change are the strong vested interests associated wiih the present state hospital system. Even with reduced number of beds, Illinois mental hospitals still represent a payroll of over $250 million. Many interest groups have a stake in retention of the current system: thousands of hospital employees, businessmen and political leaders in the two dozen communities with institutional facilities, and families of the 11,000 retarded and disturbed citizens still residing in state facilities. Localities which heavily use state hospitals to care for their mentally disturbed citizens will also be reluctant to see resources diverted in other directions. The new "community services" lobby is gaining strength but seems no more than a David compared to the state mental hospital Goliath. The Governor's Commission to Revise the Mental Health Code developed a significant new proposal intended to correct serious problems in Illinois mental health services. The three years spent in drafting the proposal revealed but did not resolve deep-seated conflicts of interest. The real tests for the proposal lie just ahead. For prospects in the legislature, see box on p. 21. July 1978/ Illinois Issues/25
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