Illinois Human Services Commission Workgroup on Rebalancing Long-term Care MINORITY REPORT From William Choslovsky

To be clear, the Working Group Report is well intended. My fellow commissioners worked hard. I presume their hearts are in the right place.

But good intentions aside, the report is flawed in several respects.

First, as a general matter, its focus - if not obsession - with "institutions" is misplaced. The first sentence of the report sets the tone by focusing on people "moving out of institutional settings." Although the Report uses the word "institutions" about twenty times, it never defines what an "institution" is. Likewise, there is no showing that most individuals (and their families) now living in "institutions" actually have any desire to move. In short, for many their "choice" is an "institution." Moreover, focusing on semantics - "institution" versus "community" - is counterproductive. The labels are more destructive and divisive than descriptive. One person's "institution" is another person's "home." Defining an "institution" as something with eight beds, or six beds, or four beds is equal parts artificial and arbitrary. Quality of care or choice should not be defined by just one metric: size. Though I could provide examples or statistics of substandard care in the "community," the goal is not to pit "community" providers against "institutional" providers, as both have a place. Instead, Misericordia's Sister Rosemary Connelly sums up the "issue" best when she says: "Big can be bad; small can be bad; both can be good. When it comes to caring for the developmentally disabled, one size does not fit all and true choice is a two way street."ii

Second, the paramount factor (or metric) for determining where someone lives should, of course, be his or her (or the guardian's) choice. The Report does a good job of expressing this principle.

Third, if the issue is money - because the state is effectively broke - then we should honestly acknowledge that, as opposed to cloaking the issue as something else like quality of care or choice. For instance, the state's remaining eight centers (SODCs) that care for approximately 2000 developmentally disabled individuals are costly. Specifically, according to published reports, the average cost per resident is approximately $150,000. In contrast, the approximate cost for someone who lives in a private "institution" (ICF-DD) or a "community" home (CILA) is actually about the same, roughly $50,000-$60,000. Although the choice for many residents (and their families) now living in SODCs is to remain in their SODC, if, for fiscal reasons, such a choice is no longer tenable, then the state should state as such rather than suggest that the residents are receiving suboptimal care or that such is not their choice.

Fourth, expanding choice for some should not come at the expense of eliminating choice for others. Likewise, robbing Peter (institutions) to pay Paul ("community" options) ultimately provides a false choice.

Fifth, whenever possible, recommendations should be specifically tailored to the different populations. That is, what may work for a mentally ill (MI) individual may not work for a developmentally disabled (DD) individual. They are discrete populations, and of course, within each population each individual is different. Thus, "one stop shopping" does not work.

Sixth, the focus should be more on the individual, and less on the "system." That is, most families and those who need services don't know or care about acronyms or various agency categories. Likewise, they don't care whether the bureaucrats score something as an "ICF" or a "CILA," so long as it provides the care they need. Instead they, of course, simply want services that suit their needs. As I understand it, the gatekeeper for most populations - e.g., DD & MI - to receive services is a PAS agency, yet PAS agencies are not discussed in the Report. The Report should direct that when an eligible person requests services, she should be given a "menu" of sorts explaining all of her options (i.e., CILA, ICF, SODC, at home) from the PAS agency. Likewise, PAS agencies should not steer people toward any one service choice, but instead should present all service options. PAS agencies should be ombudsmen of sorts, not surrogates or advocates for a certain type of service option. Ultimately, this circles back to the guiding principle of choice, which choice belongs to an individual (or guardian) and not to a PAS agency or state bureaucrat pushing a favored agenda.

Seventh, for those individuals moved from "institutions" to the "community" - and especially those moved from SODCs when closed - the state should publicly report no less than annually on the status and progress of the moved individuals. This is especially so since it has been reported that often death rates increase for residents when moved from "institutions" to the "community."

All said, the Report does much good, but in focusing on divisive labels like "institution" and lacking specifics on funding, it falls a bit short. I appreciate the opportunity to have participated in this process.

November 2, 2012 Respectively,

William Choslovsky