Illinois Human Services Commission Workgroup on Rebalancing Long-term Care MINORITY REPORT From AFSCME Council 31

The process of creating the Rebalancing Workgroup report has resulted in some meaningful discussion of controversial issues. What has not resulted is a clear statement of the challenges ahead as the Quinn Administration seeks to radically alter the service delivery system for individuals with disabilities. Such clarity is urgently needed, especially by those individuals whose very lives depend upon essential supports. Moving forward without addressing these challenges will bring change, but it will not improve lives and outcomes, and may place some lives at risk.

*One person's "institution" is another person's home

The report underlines the right of individuals and guardians to choose congregate settings over community group homes or apartments, as provided for in recent consent decrees such as Williams and Ligas. However, by using what has generally become a pejorative term--"institution"--for those congregate settings, the document diminishes those who prefer the safety, enhanced services and social interaction provided by such settings and sets the stage for those who advocate for prohibiting this ability to choose.

*The pace of change

While the report highlights the desire to be planful, respectful of choice and person-centered during any transition, the real-world process of closures and downsizing that the Quinn administration is now undertaking is light years away from such elevated concepts. The Jacksonville Developmental Center closure has been characterized by disorder and confusion. Many families have been offered only one "choice" of community placement for their loved ones-and often it would weaken family ties by moving the individual to other regions of the state. In many instances the families do not feel that the placement would meet their loved ones complex medical and behavioral needs, but they are under intense pressure to agree to these moves because they have been told the center will close on Nov. 21, and they could find themselves left without any services at all. Some settings that have accepted individuals from JDC with high need levels have no record providing these services, and that has already resulted in some of the individuals becoming police involved or hospitalized. Individuals are being moved 10 and 15 on a given day, driven off in buses, giving the impression of a forced exodus. In sum, the rapid pace of the JDC closure is not planful, respectful of choice or person-centered.

*Outcome measures, data sharing and creating good outcomes

The report largely presumes that rebalancing will always result in positive outcomes. It does state that all outcome data - both positive and negative - should be communicated. Yet the commitment made by Mark Doyle, the Governor's rebalancing officer, to share data from the Tinley Park Mental Health Center closure has still not been fulfilled. And the Singer Mental Health Center closure proceeded without the public benefitting from the information contained in that outcome data. Refusing to share this information at a minimum casts doubt on whether those rebalancing initiatives actually were positive-and raises questions as to whether data will be fully shared going forward.

*The impact on direct support employees' compensation and implications for quality care

While there was substantial debate about whether rebalancing would yield positive outcomes in all cases for the affected individuals with disabilities, there can be no doubt about the impact on employee wages and benefits. The state has consistently underfunded community agencies-with the result that even the most well-established providers are not able to pay a living wage, while many marginal providers pay little more than the minimum wage. In many instances, these workers are not provided with affordable health insurance, nor do they have any form of retirement benefit. In other words, rebalancing is actually being balanced on the backs of the thousands of dedicated direct support workers who provide essential care, support and services to

individuals with disabilities. The constant refrain of "cheaper in the community" is really no more than a euphemism for workforce injustice. Employees at state centers earn fair wages and benefits. Governor Quinn's rebalancing initiative is deliberately seeking to replace those family-sustaining jobs with low-wage, no-benefit positions in community settings and force employees to accept that lower standard of living. This chronic underfunding of the direct care workforce in the community-a workforce upon whom ever-increasing demands will be made as part of the rebalancing initiative--has serious implications for quality and consistency of care, as low wages are among the strongest predictors for high turnover which in turn is a critical variable in determining qualify of services.

*Independence is not always possible

The disadvantage of creating a report that speaks to so many people with so many different kinds of challenges is that what works well for one may or may not work well for another. That is where the language of choice is important. There is problematic language in the report which speaks to the need of individuals with disabilities to "manage responsibilities of independent living". While this is a positive goal for many individuals, we are concerned this assertion could be used as justification to abandon those who now and in the future will require ongoing and comprehensive supports and services. The individuals for whom these supports are most critical are also those who incur the greatest expenses for our state. By tying the rhetoric of independence a responsibility to economic efficiency, we are concerned the report may lay the political groundwork for neglecting those who have the greatest need.