President's Forum | Closing the Gap, by Zena Naiditch

Closing the Gap

by Zena Naiditch

A new Governor and General Assembly are in power in Springfield, and with new leadership is the opportunity for reform. Gov. Blagojevich has made a commitment to restore ethics in state government by weeding out the longstanding corruption by political and special interests, corruption that has resulted in a loss of faith in government and the relegation of the public's interest to a low status. Few states have a more sordid reputation in this regard than Illinois.

Unfortunately, to date, the Governor's ethics focus has been too narrow, targeting state workers spending time and money on partisan campaigns. Another form of corruption that flourishes in Illinois state government, which incapacitates its performance, is the routine practice of allowing political considerations, unrelated to the objectives of government programs and services, to control decisions made in this arena.

The state's steadfast refusal to join the rest of the nation in advancing the human and civil rights of people with disabilities is a case in point. Instead of building a comprehensive, quality community-based service system and phasing out large outdated institutions, Illinois' leaders have clung desperately to its institutional service system, arguing that a dual system of services is best - that we need both large institutions and community services.

This argument fails to recognize that people with disabilities, like everyone else, do not want to spend their lives in institutions. They want to live in the community! It also fails to recognize that many other states have successfully gone institution-free and that even people with severe disabilities are successfully living in the community with supports and services tailored to meet their individual needs.

The rate of institutionalization of people with developmental disabilities in Illinois is appalling - the seventh highest in the country in FY 2002. Conversely, public spending on community services for these individuals is pathetically low, at the bottom 25 percent in the country, despite being the fifth wealthiest state. Although state laws and policies require services in the least restrictive setting, individualized service decisions and consumer choice, in practice, these concepts often have little meaning when deciding where an individual will live and what services and supports he or she will receive.

The primary reason for this situation is simple - politics. Four years after the Supreme Court's landmark decision in Olmstead v. L.C., which ruled that, under certain conditions, the unnecessary institutionalization of people with disabilities constitutes discrimination prohibited by the Americans with Disabilities Act, Illinois has done little to free citizens with disabilities from institutions.

One of the best examples of the degree to which Illinois leaders have compromised the system of government is the ongoing saga of the Lincoln Developmental Center. The prior administration resisted closing this dangerous and inhumane institution for many months while the Department of Human Services (DHS) did everything possible to turn the facility around, including the involvement of the Department of Public Health and Equip for Equality in an ongoing monitoring role.

Despite all efforts, the institutional culture of neglect was resistant to change, and disregard for the human rights of residents continued to result in new cases of serious abuse and neglect. In the end, former Gov. Ryan came to the inevitable conclusion - to close Lincoln.

How many residents have to fall victim to abuse and neglect or even death at the hands of staff before the Governor and the Legislature will allow DHS to take swift and appropriate action to ensure the safety and welfare of people with disabilities? In the case of Lincoln, the situation warranted timely closure, despite organized opposition from powerful special interests - institutional workers (AFSCME), local businesses and politicians. Along with a small number of vocal parents of Lincoln residents, these parties put together an extraordinarily successful campaign to discredit a well-documented pattern of problems at Lincoln. They depicted it as a loving and caring place that had a few isolated incidents, no different than in other public and private facilities.

As a result, Gov. Ryan gave less credence to the views of state government professionals, instead listening to other interests that were in direct conflict with the welfare of Lincoln's residents. Now it is reported that Gov. Blagojevich is making good on a campaign promise to reopen Lincoln, although on a much smaller scale, at least at first. Once again, the needs of individuals with disabilities are not driving the decision.

The result of many years of political interference in the operations of state government agencies and programs is that it wears down state government. Professionals learn the lesson that politics drive decisions and the public's interest takes a back seat. Another example of this phenomenon is six Community Integrated Living Arrangements (CILAs) and a day program operated on a for-profit basis by These Are God's People Too (see front page story).

DHS has ranked these facilities for people with developmental disabilities among the lowest in the state for quality of care, with numerous deficiency findings over the last few years. The agency did not take meaningful actions to correct these serious and inhumane conditions until EFE advocated for its closure. In response, DHS undertook the usual step of performing a comprehensive financial and programmatic review. The appalling arrogance exhibited by the executive director and his many relatives who appear to be part of this for-profit business - plus the total disregard for the fundamental human rights of its residents - suggests that the leaders believed they were untouchable.

In short, as with Lincoln, a culture of profound neglect persisted at These Are God's People Too. Despite horrific conditions, DHS felt compelled - for some unknown reason - to give the agency another chance. Its most recent licensure review in July found that the agency now met up with standards, which we assume will result in a review of its license in some way.

Despite the sudden improvements by These Are God's People Too, EFE calls on state government to sever its ties with this agency. A few days before DHS did its July review, our Investigation Unit made an unannounced visit and again documented inhumane conditions, including no toilet paper or towels in the bathroom. Apparently, the agency's leadership considers toilet paper as a finishing touch added immediately prior to a critical state oversight visit, rather than a basic hygiene item to which its residents are entitled.

The Governor and legislative leaders also need to make a commitment to provide adequate funding for the state's oversight and investigatory roles in order for public and private facilities to meet minimum standards of care and safety for its service recipients. We invite people with disabilities, their families, advocacy groups, service provider associations and professional associations to join EFE in championing this cause.

As Illinois moves toward building a stronger community service system and supports individuals in their efforts to leave institutional settings, it is critical that the state ensure minimum standards for quality and safety. This will require reinvestment in the states' oversight and investigatory programs. By empowering these entities to fulfill their responsibilities, it will go a long way toward alleviating the legitimate concerns of parents about the care of their loved ones when they transition out of institutional settings into the community.

Equip for Equality urges Gov. Blagojevich to expand his efforts to reform ethics in state government by ensuring that state agencies can make decisions based on the preferences and needs of people with disabilities, free of politics and outside interference by special interests.

If he can accomplish this reform, it would eliminate the most significant barrier from instituting changes to comply with Olmstead. Illinois would then be able to join other state governments in moving aggressively toward closing large institutions and using the funds instead to develop a quality community-based service delivery system so that children and adults with disabilities can make the same choices about their lives as everyone else.

This is the dream of people with disabilities and their families throughout the state. Strong and courageous leadership by Gov. Blagojevich - with the support of the General Assembly - can make it a reality. =

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