Families and guardians of Illinois residents of SODCs have fought many battles, large and small over the years to ensure survival of our Centers. The following are a select few from the last 15 years of attacks that could have brought our SODC system down and required our fighting back.

The Gettings Report:

In 2004, the Illinois Council on Developmental Disabilities (ICDD), a state appointed, federally funded agency, commissioned a study, Financing Services to Individuals with Developmental Disabilities in the State of Illinois, otherwise known as the Gettings Report. The Report proposes ways in which Illinois can capture more federal Medicaid money. An essential component of the study calls for the sustained downsizing of Illinois SODCs by 200 people per year. In a very convoluted plan, the state was urged to:

  • fill the SODCs to full bed capacity, even open a part of the closed Lincoln DC in order to capture the greatest Medicaid reimbursement;
  • determine the year that expenditures reach a peak or are “cresting”;
  • at that point, contract with CMS to fund at that highest level for a five year period;
  • meanwhile, empty SODCs of 200 individuals per year;
  • divert the excess SODC funding to community services;
  • but retain enough funding in the SODCs to keep them operating during this transition, after which they would

ILADD worked for several weeks fact checking and preparing a response. We wrote a two page letter to the Department in which we warned that while Illinois was entertaining the Gettings proposals, Senator Grassley and the United States Senate Committee on Finance was investigating Medicaid- revenue maximizing or enhancing arrangements between states and private consulting firms, and further, that Committee Chair Grassley contended, “in the absence of strong oversight, it’s easy for consultants to peddle questionable money-making products to cash-starved states.”

We received a four-page rebuttal from the Gettings authors, to whom the Department had turned over our letter, but also, an assurance from the Department that the Gettings plan for SODCs would not be implemented in Illinois.

Blueprint for System Redesign

In 2008, “The Blueprint for System Redesign” is financed – once again by state appointed, federally funded Illinois Council on Developmental Disabilities. It is a seven year plan to improve community services and eliminate dependence on institutional care. The Blueprint admits the inability of the community to serve people with extreme needs, yet calls for the closure of five SODCs by 2014- nearly one a year. We challenged it and published a flyer entitled, “Blueprint for Disaster,” with our response, which we distributed to all legislators. Although Howe DC, which reportedly had troubles the Department claimed could not be fixed, was closed in 2010, the plan of closing five SODCs by 2014 did not happen. ILADD demanded the creation of, as well as served on, a Howe Closure Advisory Committee to oversee the safe transition of its residents and ensure the transparency of the process. A tangential outcome of this closure was an ILADD research project which challenged a declaration in the Howe Closure Report that all ICF/DD placements are intended to be temporary. Our research helped us prepare a document we call, “ICFs as Permanent Homes.” Thirty agencies, operating in Illinois, serving the developmentally disabled, signed on to our findings, helping to establish greater solidarity with our private ICF neighbors.

Ligas v. Maram, now Ligas v. Hamos

In 2005, Ligas v. Maram was brought by nine people with developmental disabilities who resided in large private ICFs in Illinois. They wanted to receive community services, but their requests were denied by the State of Illinois. In 2006, a federal judge certified the case as a class action. The state and plaintiffs fashioned a Consent Decree.

ILADD was approached by an attorney representing Misericordia, a very highly regarded private ICF/DD. He asked the SODCs to object to the Consent Decree just as the private ICFs would. My husband, Kevin, agreed to represent IL-ADD. Through the combined efforts of all of the SODC family groups, we collected 500 Objector statements which Kevin filed in federal court. In his brief, SODC families argued that the “class” definition included SODC residents which gave us standing to object. SODC families argued that if the Settlement were approved, it would commit the state’s resources in ways that would detrimentally affect services for loved ones in SODCs and other institutional settings. SODC families argued that the Plaintiffs who brought the class action suit did not represent the majority of those they purported to represent, individuals who were forced into the “class” without their knowledge or permission.

On July 1, 2009, more than twenty-five hundred guardians and family members of those served in Illinois’ private and public institutional settings (including SODCs) who had filed Objections with the Court were represented by their attorneys at a Fairness Hearing which was held before the Honorable James F. Holderman, Chief Judge, United States District Court, Northern District of Illinois. Thirty-four people, including five SODC witnesses, gave oral testimony.

On July 7, 2009, Judge Holderman issued an order decertifying the class, finding that, in fact, the class as plaintiffs defined it was overbroad and that they did not, in fact, represent the class they purported to represent. The court also said in its order: “A common theme among the objectors was the concern that many developmentally disabled individuals, who are within the class definition would be adversely affected by provisions of the Proposed Consent Decree even though the individuals neither met the criteria of Olmstead nor desired placement in a community-based setting.” The nine named plaintiffs were permitted to pursue their suit, but Ligas was no longer a class action lawsuit and the Consent Decree was denied.

Later, under the Amended Complaint and Consent Decree, the newly defined Ligas class includes only people in private ICF/DDs who have made a record requesting community services. People who are happy with their current ICF/DD placement are not part of the class and may not be forced to move.

Next:  Governor Quinn’s Rebalancing Initiative of 2012