Issues related to the Disability Support System in Illinois

For the past thirty years, community programs run by local, non-profit organizations have grown to become the predominant provider of support services for people with disabilities in Illinois. The state's public policies related to people with disabilities have changed from models based upon large institutions, to smaller, more family-like settings provided by these community organizations. The future will continue to show increasing demands for community-based programs. It is the goal of the Institute on Public Policy for People with Disabilities (IPPPD) to work in tandem with state government officials to help meet this new demand, while improving services to all persons currently in the state's disability support system.

Since 1990, funding for institutional programs has grown at a rate 25% higher than the cost-of-living. As efforts to contain costs at all levels of state government increase, Illinois will be hard pressed to justify the high per-capita costs in its institutional settings.

In stark contrast to institutions, funding to community-based providers in Illinois has lagged behind the cost-of-living by almost 50%. As greater numbers of people with disabilities choose community-based settings, agency caseloads will become overloaded. A statewide crisis of care will eventually ensue, with increases in safety and health problems blamed on Illinois' lack of adequate funding.

It is predicted that both of these scenarios will become significant public issues during the next Governor's term, leaving Illinois with no choice but to haphazardly spend millions of dollars on quick fixes that most likely, will have no long-term impact on the disability support system. The end result will only be more turmoil and spending to solve a problem that should have been avoided.

This is why the IPPPD is promoting a collaborative approach between the state and all providers of disability support services. Statewide, there is universal agreement that the health and safety of Illinois citizens with disabilities must be protected; and that the time to start is now. There are five broad issues that we have identified for initial discussions and planning:

1. Development of consistent community services statewide
2. Maintaining the quality of services
3. Review of existing rate determination processes
4. Maintaining financial integrity within the statewide disability support system
5. Redesigning the statewide disability support system

 

Consistent Community Services-There has been no new disability service initiatives in Illinois except those forced by class action litigation. Statewide, there is a wide disparity in the available services for persons with disabilities. Families find it difficult to know where to start in their efforts to obtain needed support services.

Today, there is widespread acceptance of family support and raising children at home instead of in institutional settings. As a result, millions of Illinois tax dollars have been saved in state-run children's residential and other related program costs.

However, with no adult mandate for services, thousands of these children have no opportunity to participate in adult day, employment or residential programs. Their learned skills begin to deteriorate. Over their lifetime, more taxpayer resources will be utilized for support than if services were available without interruptions.

The primary provider of support is usually an elderly, single, female parent, whose greatest concern is "who will take care of my son/daughter with a disability after I am gone?" As the caretaker population begins to dwindle, the state will be faced with a tremendous number of future emergency placements. Currently, Illinois has no effective means by which to measure this burgeoning demand for services.

 

Quality of Services-By their very nature, all human service organizations are labor intensive. As a result, any deterioration in the quality of staff will impact the quality of services. Hiring good staff is a major concern for all businesses, especially those organizations supporting people with disabilities.

Expenses related to recruiting, training and education are higher than ever, yet most organizations continue to have difficulties finding good employees. These difficulties are directly related to the decline in purchasing power that human service providers have experienced as a result of limited state funding increases.

In other states, long-term under-funding of human service programs has led to significant increases in abuse, neglect, health and safety issues for persons with disabilities. Without assurances that rates will keep pace with inflationary forces, and despite our best efforts, it is reasonable to assume that Illinois will also experience these same difficulties.

There is a growing acknowledgement in the media of the inadequacy of funding in Illinois for human service programs. Unfortunately, most media sources thrive on controversies and failures within government. They are having a field day in California; if Illinois allows our funding decline to continue, the media will have their opportunity here as well.

 

Rate Determination Processes-Quality of services is also related to the rates paid by the state for disability support services. Despite a nationwide ranking of number six?? in per-capita income, Illinois ranks forty-??? in the nation on per-capita spending for disability support services. Add to this, the rate bias in favor of institutions, other dual rate systems, geographic and historical rate differences, and you end up with inequities that often place organizations in conflict against each other.

Current methodologies claim to consider individual differences in the type of support needed, but in reality, are labor intensive variations of doling out only what the state has budgeted for the year. Rate determination lags behind decision-making, creating financial hardships for the non-profit agencies providing services. Rate changes, such as the six month review under the Community Integrated Living Arrangement, make it difficult for providers to meet people's changing needs with any long-term sense of security.

 

Financial Integrity-Community providers of human services in our state understand the many competing interests that government must consider. However, Illinois must question the fiscal prudence of saving dollars today, only to have us spend multiple times these amounts tomorrow to provide the needed supports. Not only does this kind of "planning" not make fiscal sense; it systematically jeopardizes the health and safety of people with disabilities. Based upon experiences in other parts of the country, today's limited savings, will translate into millions of dollars spent tomorrow on measures with questionable long-term value.

Additionally, Illinois must consider the question of whether taxpayers will continue to accept the ever-increasing, per-capita costs of institutional care. As more resources go toward fewer institutional residents, fiscal accountability issues will begin to rise. The disability support system, already under-funded, will not be able to afford these increased institutional costs.

Community-based organizations are already feeling the brunt of the funding limitations. Most started as partners with Illinois, providing services with some sense of fiscal integrity and security coming from the state. Thirty years of experience has given us many funding delays, changes in payment structures, unfunded mandates, absurd audit and oversight requirements, inflexible funding categories and a host of other issues that stifle creative and cost-effective support.

 

System Redesign-Over the past twenty years, American business and industry has undergone significant change. New competitors, deregulation, technological improvements, pricing, quality and a host of other issues have caused restructuring, mergers, acquisitions and bankruptcies of many different companies. Although it is still too early to judge, Illinois government, as evidenced by the creation of the Illinois Department of Human Services, is also in the midst of change.

The community human service industry is also preparing itself for change. Organizations recognize the need to cut costs and create new ways of providing needed support services. However, a true dialogue is needed between the state and its community providers to create a better system of high quality, cost effective support services for people with disabilities. Currently, the only plan that seems to exist, is the one that slowly squeezes the life out of community organizations by denying them funding for their increased costs-of-support. As this happens, quality becomes compromised, persons with disabilities fall into harm's way and the state will ultimately be vilified for allowing all of this to happen.

As with other industries regulated by the state, a serious plan to restructure support services for persons with disabilities must be developed. A true and realistic evaluation of: current and new resources; needs; competition; deregulation; technological improvements; provider consolidation; etc., must be included in this plan. This can only take place in an environment of mutual trust and partnership between the state and its community providers.

 

Summary-More than ever, change is needed and will come to the disability support system in Illinois. It will start with joint efforts between the state and community providers to deal honestly, effectively and persistently with the issues outlined here, as well as many more yet to be identified.

Illinois clearly has the capacity to become a model to the nation on how disability support services can be delivered in an effective, efficient and contemporary manner. The will to do so requires a change in the attitudes of all the principle stakeholders. To not do so would jeopardize the lives of the thousands of people with disabilities who look to us for support every day.