Miniority Report on Rebalancing Long-term Care Submitted by Shawn Jeffers

Illinois Human Services Commission Workgroup on Rebalancing Long-term Care MINORITY REPORT From Shawn Jeffers

"All that is necessary for the triumph of evil is that good men and women do nothing" - Martin Luther King

I want to go on record as in support of the "minority report" submitted by William "Bill" Choslovsky, Esq. I am particularly concerned by the syllogism applied to the concept of "institution or institutional settings" as stated or inferred throughout the proposed rebalancing report. In reading the report a viewer can reasonably conclude the following:

All institutions or institutional settings are "bad" (the major premise), Organizations like Little City Foundation are institutions (the minor premise), therefore, Organizations like Little City are bad, (the conclusion).

In an earlier meeting with the rebalancing committee, I asked that consideration be given to defining terms such as "community" and "institutions" but my suggestion was summarily dismissed. The opinion expressed by various committee members (except for the Chair) was akin to the idea that we already know what it is or would know it when we see it so there was no need for definitions i.e., "community or institutions". While I disagreed with this premise I chose not to continue to push the issue in the interest of time. After reading the report I regret relenting on this important distinction.

The rebalancing report starts out with the following declaration: "Rebalancing Long-term Care in Illinois is a broad effort by the State to provide opportunity for persons with disabilities and seniors to choose to live in appropriate integrated settings in the community; moving out of institutional settings." Are organizations like Little City Foundation, Misericordia or Marklund the next targets of rebalancing? Is the goal of rebalancing a license to remove people from settings such as Little City Foundation, Misericordia, Marklund and similar campus-based programs and not make it a "choice" option for individuals and their families? The answer seems obvious to me now, and it is on this basis that I enter an objection.

Up to this point, my organization made a conscious but difficult decision to stay out of the fray. The issues being debated - closing of under-performing or under-funded state-operated developmental centers or the closing of large poorly operated ICF-DDs - was not actions that our constituency were particularly indifferent to. I recall that during my initial meeting with Bill Choslovsky he asked why Little City Foundation was silent on the issue and I explained how our residential service and program mix did not include ICF-DD offerings or other options previously under attack.

The recent exchange between Bill and others on the distribution list really disturbed me as the arm of attack has clearly moved into my organization's backyard. I have consulted with others in our organization, most importantly the individuals we faithfully serve and their families, and they want us to be their voice on this issue. In taking our position I am reminded of a famous statement attributed to Pastor Martin Niemöller (1892-1984) about the inactivity of German intellectuals following the Nazi rise to power and the systematic eradication of their chosen aims, group after group. As a refresher here is a rendition of the text:

"First they came for the socialists, and I didn't speak out because I wasn't a socialist. Then they came for the trade unionists, and I didn't speak out because I wasn't a trade unionist. Then they came for the Jews, and I didn't speak out because I wasn't a Jew. Then they came for me, and there was no one left to speak for me."

I realize that for some self-proclaimed "advocates" the organization I lead (Little City Foundation) is among their targets for abolition despite our being a preferred choice for so many people. I am concerned that if the true advocates of choice do not speak up and speak out there really will not be any choices except for those options that the arbiters of opinion feel are appropriate. At some point I hope that the voices of the families we serve and the individuals we support are heard and that more respect is given to their "CHOICE". I have grown tired of hearing these individuals and their families being marginalized and described as ill-informed, out of touch, uncaring, duped etc. for choosing to forego options outside of what they presently have, i.e., campus-based living.

For over 53 years, Little City Foundation has served as the supportive home for hundreds of children and adults with intellectual and developmental disabilities. Our array of residential living and family support options range from providing supports in private homes, CILA, SLA, and CLF. We have a continuum of options that are uniquely positioned and made available to afford individuals with choices for how and where to live based on the dynamic nature of their life cycle. We have never and will never hold an individual or family hostage to our program and we commit ourselves to helping people and their families find the best option for them (even if it includes leaving our organization). Call us what you want -institution or otherwise - but make sure that the definition used truly captures the essence of who and what we are, as described by the people who entrust us with their care.

I hope that the HSC Rebalancing Workgroup report, once amended, edited etc., gives more transparency and clarity particularly in its definition and descriptions of terms. I hope that the report clearly states a position on "institutions" or clarifies what it means by the use of this term. By doing so the many parents and families who entrust us with the care of their loved ones; the individuals who seek our help to achieve a meaningful and fulfilling life; the legion of donors and volunteers who believe in and invest in our mission; and the staff who each day dedicate their heart and soul to pursuit of mission will more clearly know who stands with them on the issues important to them - respect for and acceptance of their "choice".

In preparing my remarks I gave our parents and advocates a chance to review what I had written and asked if I appropriately and accurately conveyed their feelings. I want share a direct comment I received from the parent of a young man who resides in one of our campus-based homes, she writes: It sounds great to me-no edits to recommend. I will add that it appears to me that the so-called advocates are taking advantage of the closing of state ops and trying to sneak in their ultimate desire to close anything they think looks like an institution by cleverly manipulating the language. It is devious and despicable-and I resent anyone denigrating my choice without truly having knowledge of the choice I made or the reasons I made it!"

In support of this parent and other stakeholders I end with the following:

May those that love us,

love us. For those that don't love us,

 May God turn their hearts.

 And if he doesn't turn their hearts,

 May he turn their ankles,

 So we'll know them by their limping. - Irish toast

Respectfully submitted…