I write this letter as a response to the serious allegations exposed by the Chicago Tribune in regard to the extremely poor services provided by some agencies within homes licensed as Community Integrated Living Arrangements, commonly referred to as CILAs. The last of the series was very positive toward Misericordia, and the reporters approached us as they were aware that our philosophy is different from the current “trend.” We, Misericordia, stand in contradiction to a national trend that holds that there is only one way to serve people with disabilities and it’s their way: the government bureaucrat’s way.
According to this philosophy, everyone, no matter how severely disabled or behaviorally challenged, belongs in isolated homes in the neighborhood. Big is always bad. Therefore, Misericordia is regarded by some bureaucrats paid by the government as – and I quote: “An antiquated organization which segregates its residents and is setting services back to the 1900s where they warehoused their residents.”
This present philosophy began in the ‘70s as a negative reaction to the large public institutions of the past, which at that time did warehouse their residents. The only reason Misericordia is the beautiful home it is today is because we have always had the bipartisan support of our elected officials – on Federal, State and City levels of government. Our families ask their elected officials to come and tour Misericordia. When they come, their response is: “The bureaucrats don’t like you? You should be a model for the country!” Their friendship was proven when the Continuum of Care Bill, which recognizes Misericordia as a legitimate way to serve people with disabilities, on the State level of government, came for a vote in Springfield. The Senate voted 59 yes/ 0 no – and the House voted 110 yes / 4 no. And the governor, because he had a very positive visit to Misericordia, did not veto the Bill.
When you read about the terrible care some persons received in the houses in the neighborhood (CILAs), you can trace much of the blame back to the very WRONG philosophy permeated by the government bureaucrats for 40+ years….that there is only one way, their way, where every person with developmental disabilities belongs in isolated houses in the neighborhoods. Any service – with no exception – that is big – is bad.
I believe strongly that not every person with a developmental disability belongs in an isolated house. This is true especially for those persons with severe disabilities and those with serious behavioral challenges. You hear from some who have never visited Misericordia that we only care for lovely persons with Down syndrome. This is absolutely false, and the variety of persons we serve is the reason we needed a full Continuum of Care License. We are blessed to be able to provide a complete range of services to individuals – from Skilled Nursing and on-campus residential homes to 10 CILA homes in the neighborhoods.
But it is true that before we admit anyone to Misericordia, we study their needs, and if we judge we cannot provide adequate services for them in an appropriate setting, we do not accept them. This is always a difficult decision, but we don’t want to set the person up for failure. And as difficult as it is, we accept our limitations. Our families are so grateful because with the Quinlan Terrace we now can tell families – unless something extremely different happens – we can walk this journey with the family until God calls their most vulnerable family member “home to God.”
Families of persons with special needs throughout our country are beginning to organize against the “one way fits all – and it’s the government’s way” philosophy. They feel strongly that their right to choice is being denied. Who knows better than the family what their most vulnerable member needs?! Should this not be respected! The majority of our families want to be involved. Some are generous financially, but many show their gratitude by giving of themselves in so many different ways. Our philosophy with families is that we don’t take their most vulnerable member from them; we share this special person with them. Most are eager to help us maintain the “quality of life” they believe their child deserves! It is a joint effort, which all appreciate. The 20 percent of our residents who have no family or come from extreme poverty are an additional and great blessing to us. We know their presence is surely one reason God blesses us so generously.
I know agencies that depend solely on the government for their funding are hurt severely by not only a lack of payment for some, but also a failure to give an increase in the daily rate for 8 to 10 years. If we were not successful raising the private dollar, we could never be what we are today. How grateful we are that we have the best Family Organization for persons with disabilities in the State of Illinois and perhaps the country. And now we have a great Sibling Organization with members who are replacing their aging parents. What wonderful gifts they are!
I’m truly sorry for all the agencies that have been hurt by the Tribune series. Some are deserving of this very negative response to their care, and others are victims of these Federal and State policies that hold everyone belongs in isolated houses. Our 10 homes in the neighborhoods (CILAs) are only effective because they are complemented with campus services. The CILA residents are high functioning and work well with our staff. Yet, I hope this next example will reinforce the need to have alternatives to CILAs. We already have residents, once appropriately placed in CILAs, whose needs changed so radically over time that we were no longer able to provide appropriate care for them in their CILA. They returned to our McAuley Skilled Nursing Residence and our Holbrook Assisted Living Residence where they were surrounded by competent doctors, nurses, therapists and specially trained staff. Several lived for three or four years in these very compassionate and competent surroundings. The families were very grateful that their most vulnerable family member could be cared for at Misericordia until they returned to God and the fullness of life in Eternity. How blessed we are to be able to walk this journey with our residents and families.
My prayer is that those making and enforcing policies that do not recognize the need to have other services – besides homes in the neighborhoods – will see that there is never only one way to serve persons with disabilities. CILAs have a purpose, but not for all people. Our 10 homes in the neighborhoods are loved by the occupants, but they would be in isolation if they did not have our campus to complement their lives. And what happens when the person needs more medical and nursing care? Will they be “dumped” in inappropriate nursing homes, setting the ground work for more scandal? Often, history does have a way of repeating itself.
In 1976, when Misericordia moved to our North Campus with 39 children and 35 staff, the prior service on the campus was Angel Guardian Orphanage. In the early ‘70s, the state bureaucrats decided that orphanages were bad and stopped all funding. Since the orphans had “no voice” to speak for them, they were placed in isolated foster homes. It was automatically assumed that foster homes were appropriate for all. When I see the middle aged homeless persons on the streets of Chicago, I often wonder if some are the displaced orphans of the ‘70s. Could some of these unfortunate people not be the “so-called success stories” of the ‘70s, victimized by a philosophy that held that there was only one way – (everyone in foster care) – appropriate for those vulnerable children? The bureaucratic assumption of today that CILAs are appropriate for all persons must be challenged and changed. Families should have the right to choose what is best for their most vulnerable member.
In closing, I want to share that one of the greatest gifts God has given us is membership in our Community of Believers. It is in this Community that we all have been brought together by the mystery of God’s love. How blessed Misericordia’s residents are to know that you, our friends and supporters, believe in their right to a good life – and believe enough to walk this journey with us so generously. May the New Year be a blessed one for you and yours, and special thanks for your many Christmas gifts that enable us to provide a loving and enriching environment. How blessed we are to claim you as members of our Community – our Family.
Sister Rosemary Connelly, RSM