A Background Paper on Illinois Services to
Individuals with Developmental Disabilities:

Introduction:

Illinois' community based services for individuals with developmental disabilities and their families has evolved in a disjointed fashion and today we find a non-system which is characterized as a patchwork of various pieces which don't interrelate. The evolution of the current pattern of services can be traced to events occurring since the early 1960s.

The purpose of this background paper is to identify the events which shaped the current pattern of services and identify the critical issues that need to be addressed if Illinois is to have a coordinated system which bridges the jab between those who have services and those that do not.

Historical Development:

Prior to 1950 Illinois relied almost entirely on public and private institutional services for children and adults with mental retardation. Public institutions (Lincoln and Dixon) were over crowded, under staffed and provided a poor quality of care. Many families were dissatisfied with the lack of community based special education and vocational services and found institutional placement unacceptable. Through the initiative of concerned families across the state, community based organization and services were established during the 1950s and 1960s in communities across the state. This parent sponsored movement was reflected in most states across the nation and today these organizations represent a significant portion of the community based system of services.

In the early 1960s, the State of Illinois began its first governmental funding for community services through a pilot grant for Community Day Programs for the Mentally Retarded (Chicago and Peoria). This grant in aid program was formally established by Department of Mental Health regulation in 1963 and the Illinois General Assembly appropriated funds to support community services. Illinois was one of the first states to fund community based services for individuals with mental retardation.

Residential services received significant attention in the late 1950's through efforts to pass the Public Welfare Building Bond issue. Almost all state institutions for the mentally retarded and mentally ill were in need of significant renovations and improvements. In 1960 the citizens of Illinois approved a $150 million bond issue to improve state institutions. Following the passage of the bond issue and the change of administration, the decision was made to shift to a community based system of mental health and mental retardation services. The zone center concept was developed which was to bring every citizen within 90 minutes of services. It was the zone concept that formally establish Illinois in the forefront in shifting from an institutional model to a community based model of service. The state was subdivided into geographic zones and a portion of the bond issue revenues were used to design and construct zone center complexes in six of the eight geographic zones in the state. All of the zone center facilities and sub-state administrative organizations were operational by 1967.

With the opening of each administrative zone, centralized governmental functions were decentralized to each administrative zone. This included responsibility for grants-in-aid to community based services for individuals with mental retardation. While the new zone center complexes were intended to provide inpatient and outpatient services for individuals with mental retardation few did so and this became a critical issue with mental retardation advocates. However, each of these sub-state administrative entities did establish an Assistant Zone Director position with responsibility to oversee the community grant program for mental retardation services. This individual played a key role in community organization activities, service coordination, resource allocation and planning. This sub-state regional administrative structure continued to carry out these functions throughout the 1970s and 1980s.

In 1983 the eight regions were consolidated into five regions due in part to the need to reduce costs and in 1988 the regions were abolished altogether. While this action was primarily due to the need to reduce costs it was possible to take such action because the community based service providers did not see the regional structure as necessary at a time when state resources were limited and budgetary reductions had to be implemented. Administrative savings were taken and community funding was not reduced.

Concurrent with the development of the zone centers, Illinois expanded its state institutional bed capacity for individuals with mental retardation. This took two forms over a number of years. As the mentally ill population in state psychiatric hospitals was reduced through placements into private nursing homes and discharges to community based services, the available bed capacity at state psychiatric hospitals was utilized for individuals with mental retardation (Peoria, Galesburg, Kankakee, Alton, Chicago, Elgin, Jacksonville). Individuals were transferred from Lincoln and Dixon to these settings. During the same period Illinois constructed new state facilities for children and adults with mental retardation (Centralia, Harrisburg, Waukegan, Park Forest, Tinley Park). The Dwight VA facility was given to the state and opened as a state mental retardation facility.

Beginning in the late 1960s, throughout the 1970s and well into the 1980s, Illinois reduced its population in state mental retardation facilities through placements in private sheltered care facilities and intermediate care nursing homes across the state. In the mid 1970s, with the availability of Medicaid funding under the new Intermediate Care Facility for the Mentally Retarded (ICFMR), we saw the conversion of some general private nursing homes to ICFMR and the development of new ICFMR facilities. Illinois' public institutions for individuals with mental retardation were brought under the ICFMR Medicaid program and the state began receiving reimbursement for 50% of its state institutional costs.

Private ICFMR beds grew significantly during the 1970s and 1980s. It was not until the early 1980s in Illinois that we began to see the shift in emphasis in residential models from institutional to small community integrated group homes. However, this shift in thinking did not lead to any policy changes that moved the public or private residential system away from its institutional emphasis. It just added a new option. Community providers and private developers could go in whatever direction they chose. Unfortunately, at about the time Illinois offered the model of small community integrated living, new expansion funds for such options grew more and more difficult to obtain. At the same time funding was open ended for the further development of ICFMR settings and numerous ICFMR-16 beds or less settings.

In the late 1980s the Community Integrated Living Arrangement (CILA) legislation passed the General Assembly defining a new community residential option that emphasized a residential support model tailored to support individuals with disabilities in a range of settings from the natural home to 24 hour settings. Initial funding for the model focused primarily on individuals in intermediate nursing homes who elected to move to small integrated community settings under federal law and a federal court consent decree (Bogard).

During the mid to late 1960s the General Assembly passed legislation which allowed local governmental units to levy a tax to support services for individuals with a developmental disability. During the late 1960s and throughout the 1970s many governmental units passed referendums and local tax revenues were made available for service expansion. With the passage of these referendums, local governmental units established local boards to allocate these funds and to provide leadership in planning. Each statute allowed local determination as to whether or not to levy a tax. Today, across the state, we have counties and townships playing a significant role as funders of services and facilitating planning within their governmental unit. However, less than 50% of the population lives in a taxing body that levies a tax for developmental disability services.

During the 1970s, governmental funds to support a range of community day, vocational, and residential services increased significantly. The distribution of these funds was not on any population model but was based on the existence of community provider organizations willing and able to expand services. Well established organizations, interested in creating a comprehensive range of services, tended to fair well in obtaining new resources to expand services. The lack of a population model guiding the distribution of state resources and the lack of a defined community service model helped to create the lack of funding parity across the state and the patchwork in services. By the early 1980s, funding for the expansion of community services was reduced significantly as the state experienced a serious economic crisis. Throughout the late 1980s and 1990s family support funding increased as did resources tied to state priorities dealing with the movement of adults from nursing homes and state operated facilities.

The pattern of growth in private residential and community support services resulted in a disproportionate distribution of resources across the state. Services were available to some citizens and not others. With the reduction in expansion dollars this lack of parity became an issue. New funding was limited to state defined initiatives. Recognizing the lack of funding parity, the Illinois General Assembly appointed a Technical Task Force on Community Mental Health Services in 1988 (Public Act 85-991) to examine various ways in which community mental health and developmental disabilities services may be funded, monitored and administered. Reports were made to the Illinois General Assembly. The Task Force became interested in legislation that would implement some form of equity-based grant funding. The Task Force had concluded that the allocation of grant funds was a function of how the community service system evolved over time and mal-distributions were significant. It was found that the county receiving the highest level of per capita grant funding utilized over seven times the resources consumed by the county receiving the lowest level of per capita grant funding.

The Community Mental Health Equity Funding Act was drafted by the Task Force, passed the General Assembly and became effective July 1, 1992. The law calls for the adoption of a formula funding model and that funds appropriated under this Act would be allocated according to the formula to under funded areas over a course of a five year period. Funds would be provided through a special budgetary line item, depending on the availability of resources during each fiscal year. While the state has experiences strong economic growth with surplus funds, this law has not been implemented.

The passage of state (1969) and federal (1975) legislation mandating public school special education services for children with disabilities from three through twenty-two had a major impact on community based services. Eventually, most private special education services shifted to the public schools and families were able to access a full range of educational services. With this mandated educational program fewer children were placed into public or private residential settings. With the influx of educational funding, community grant funding focused on adult services and family support services such as early intervention services for children birth to three, in-home respite and other supports.

 

Issues:

Today, Illinois' pattern of service clearly reflects the historic impact of various events over the last thirty or more years. It also reflects missed opportunities to define at the highest levels an organized course of action that would have strengthened today's community based services to individuals with disabilities and their families. Even with the passage of legislation to bring funding equity in the grant-in-aid program we see no action even when the state has the resources. The issues are clear and solutions need to be identified in order to assure the availability of services in the future.

Issue: Community-based services are not coordinated through any geographic structure which assures that needs are assessed, planning is conducted and resources are proportionately allocated and appropriately utilized.

Issue: Residential service development is not based on any model which defines the preferred approach to residential supports and allows a range ofsettings that will be supported by state flinding.

Issue: A uniform go vemmen tal flin ding policy for comm unity based services does not exist even though legislation was passed to accomplish such in the grant4n-aid program.

Issue: Critical support services are not uniformly available to citizens across the state.

Issue: A small number ofthe total population with developmental disabilities live in institutions, yet they receive a disproportionate share of state funding.

Issue: Illinois' rate system historically has not covered reasonable costs ofproviding residential services.

Issue: There is no reliable data on the needs of individuals with disabilities for residential or other services.

Summary:

The issues facing the Illinois community based service array for individuals with developmental disabilities must be addressed if we are to bring existing services into a true system of coordinated services. The existing structure is not a system of service because it lacks a defined structure that provides for the ongoing assessment of needs, planning, resource allocation and monitoring.

Addressing these critical issues should be given highest priority by the executive and legislative branches of state government, consumers and providers of services. The solutions to these issues, and the course of action in implementing change, will only be successful if the various stakeholders take ownership of the solutions and press for their implementation