Home | About the Institute |  Position Papers | Member Info | Contacts

The Structure of MR/DD Systems within Illinois Government

In Illinois, persons with developmental disabilities are finding it ever more difficult to access needed day and residential support services. While many of their hardships can be attributed to an under-funding by the state of existing support programs, attention also needs to be drawn to the government structure and policies that are designed to administer these services.

Today, decisions related to funding and government oversight of state financed disability programs, come directly out of Springfield, Illinois. While the state has created seven? geographical networks within the Department of Human Services (DHS) that support developmental disability services, the ability of these networks to reevaluate policies and administer funding on a local level is very limited. They primarily exist to carry out the edicts from central office and to provide the first level of contact for agencies funded by the system.

Families and persons with disabilities seeking services usually make their first contact with a local provider of service. Those who require a state subsidy in order to pay for services must be referred to a regional Individual Service Coordination (ISC) agency. These are state funded, third, party, non-governmental intermediaries whose responsibilities are to:

ensure that persons qualify for state funded services;
locate and make application with local providers of services;
obtain program and funding approval from Springfield;
provide follow up to ensure adequate and appropriate service

In theory, applicants would be clinically and financially qualified by the ISC agent. They would then choose from an array of available programs, including those of the local agency where their quest for services first began. Funding would come from Springfield directly to the provider of programs and the person would have his/her needs properly supported.

The reality has many families and persons with disabilities following this process, becoming qualified and then entering the pipeline to receive funding for an already available programs, only to find services unavailable due to a lack of state funding. Often funding is only possible through a process which attempts to establish the case as an emergency priority. The backlog gets bigger, but is not officially recognized.

The DHS budget will allow only for a small number of such emergencies, or filling vacancies of people who have died or moved out of state. No real local control or creative use of potential resources is encouraged or supported.

While true emergencies are usually attended to (often after significant delay) there are numerous examples of persons in jeopardy, who wait an inordinately long time to receive any state-supported services. We have a state-supported system that is structured to put out fires only after they are blazing, and it is inevitable that some people will get burned.

Aside from this emergency designation, and with the exception of committing a crime, there are currently no programs, initiatives or other mechanisms that would allow a person with disabilities to receive funded services from the State of Illinois.

It is a known fact that the demographics in America and in Illinois, show an overall aging of our population. As this includes persons who are the primary caretakers for persons with disabilities not funded by the state, it is reasonable to assume that as these caretakers become unable to continue, the number of requests for emergency placements will increase.

This is already beginning to take place in Illinois. Since there is no process to systematically prepare for alternative support systems, frustrations are mounting and people have begun to bypass the existing ISC, local providers and DHS by appealing directly to their legislator. The central office staff in Springfield, already inundated with requests coming through the "official" process, find themselves dealing more and more with legislative interventions. Since the DHS budget is limited in the number of funded placements that can take place and the legislature controls the DHS budget, there is a tendency to allocate positions that will satisfy the legislative requests.

Many legislators have already expressed their dissatisfaction over this burden that is forced upon their offices. The demand already exceeds what any individual legislator could ever expect to produce; as more people realize that an alternative, legislative pipeline exists, the number of attempts to garner legislative intervention will skyrocket. Legislators will be unable to come through for their constituents; ultimately DHS and the State of Illinois will be blamed for increases in abuse, neglect and a lack of foresight in the planning and implementation of programs that could have prevented any crises. Millions of dollars may then be spent on short-term, ineffective programs just to get Illinois out of the negative spotlight.

Members of the Institute on Public Policy for Persons with Disabilities (IPPPD) would like to work in tandem with Illinois officials to produce a system structured to provide adequate, meaningful support for people with disabilities.

The increasing difficulty that our state has in adequately meeting the needs of people with disabilities require us to examine the system and structure under which developmental disability support services are administered by the State of Illinois. As Illinois moves forward with plans for general welfare reform, it is evident that the vastly different nature of mental retardation/developmental disability (MR/DD) services will require a different philosophy and structure to ensure that no crisis or harm comes to any Illinois citizen with disabilities.

The members of the IPPPD would like to put forth an idea for future restructuring that would improve government oversight and accountability in taxpayer supported disability programs. Initially our goals are:

A. To inform the new Governor, Legislature, Department Directors and other responsible persons in government of the unique circumstances that persons with disabilities have before any restructuring of their government support programs take place;

B. That acknowledgment of these differences is evident in all appointments, policy/process planning and implementation;

C. To be a partner with the state in creating an environment that will lead to the best possible outcomes in the lives of people with disabilities.

Once the question of leadership in the new administration is resolved, the members of the IPPPD would like to work with those leaders in the development of a plan that would begin to devolve the state's role in the provision of disability support services. This is not meant as a means to provide absolution of responsibilities that state government has in the funding of disability support services. However, given limitations in the amount of resources available, consideration of a shift in administrative responsibility from the state to some local authority, would allow for the best possible use of those limited resources.

Through the use of some agreed upon formula, the local authority would be provided with state dollars that would then be used in the most effective way possible, as determined by that local authority. Additional tax dollars could be locally raised for medicaid match purposes and approval of funding for individual persons with disabilities into the system would be a local decision. Legislators and the state would be freed from the politics of raising taxes for social programs and the task of obtaining state funded program positions for constituents in their districts.

Additionally, Illinois is under review from the U.S. Health Care and Financing Administration (HCFA) for a variety of issues including " an ineffective monitoring system of services to individual clients which is too closely tied to the provider agencies and therefore conflicted". This local structure would be in a position to monitor individual client services and take responsibility for outcomes from all community support organizations.

Different models exist by which to administer local control. The Illinois program will have to be developed through an inclusive process to ensure acceptance and awareness of the changes to take place. The following are possibilities that could be considered for discussion:

A. DHS doing it itself by recreating a regional/subregional structure.

B. Expansion of the role and authority of the Individual Service Coordination Agencies.

C. Creation of a county-based system.

In addition to the state transfer of responsibility, local provider organizations will also have to begin the process of consolidating as a way to provide greater economies-of-scale and reductions in overhead expenses. Rate guarantees and use of funds saved through consolidation have to be provided by the state and local oversight entities. Consultative support and other business management training needs to be made available to local provider agencies.

Within the next governor's term, major changes of this type must be considered for the long-term well-being of government funded disability support programs. Left on its own, the end result will be devastating to persons with disabilities in Illinois.