39 Comments - gathersno - Monday, May 23, 11 @ 8:40 am: The large outmoded state institutions are a relic of the past and most states have downsized and closed them. While there are occasional horror stories such as Graywood, most small, integrated group homes have a tremendous track record of safe and caring services to persons with developmental disabilities. Illinois recently closed two institutions in Tinley Park and Lincoln due to abuse, neglect and deaths. They should all be closed forever. - Cincinnatus - Monday, May 23, 11 @ 8:42 am: It would be an interesting maneuver, and one that would garner bi-partisan support, if as part of his cost cutting, Quinn proposed closing down the state facilities and instead programed state funding into the more efficient group home settings. But I believe the state facilities are staffed by public sector employees so fuggitaboutit. - wordslinger - Monday, May 23, 11 @ 8:49 am: –But I believe the state facilities are staffed by public sector employees so fuggitaboutit.– Right, because Illinois has no track record at all in contracting out services to private providers. Just a clueless Tea Party talking point. When my mother descended into dementia, my family had great experiences in both a group home setting and a county home. I don’t know if it’s an either/or situation, but just insisting on a standard of care. Both the group home and the county home encouraged us all to show up, without notice, any time morning, noon or night. We did and our comfort level with both couldn’t have been higher. - Cincinnatus - Monday, May 23, 11 @ 9:01 am: So, Word, you received good care in both settings. As the story and posters have pointed out, the state facilities are rife with problems. I would suspect that the group homes run with less money. So explain to me the reason someone from the Tea Party (which I am not) would not see that the better use of state money would be with the group homes. Other than a union apologist, who would not want to see less money spent for equivalent care, because you are right, the state should only insist on a standard of care. - zatoichi - Monday, May 23, 11 @ 9:03 am: Another paragraph from the Trib story: “The most important thing a provider agency can do is make the best effort to hire the person who has the skills and interest and desire to serve people with developmental disabilities,” said Michael Hurt, who helps oversee quality efforts at the Illinois Division of Developmental Disabilities. “Most providers would agree the folks giving that care are the backbone of what happens in agencies.” Nice sound bite. There are great people and organizations providing these community based services all over the state who are very dedicated to the people they serve. At the same time salaries for direct services are often below $10 an hour, limited to no benefits, and often no retirement plan. Turnover rate is often 50%+ per year. Finding the right employees is often very hard as any employer knows. At $9.50 per hour, it is not a job that many people will be willing to invest their time and energy for the long haul. Why? The rates paid by the state barely keep the organization afloat. Go buy a home for 8 people, remodel it to meet all the standards, staff it 24 hours a day, provide training, meals, backup coverage, various services, utilities, multiple state inspections, and all the other things needed for a good operation. Costs some serious dollars. Then be told by the state there is no promise of referrals, you need 6-8 months operating cash before payments might start, and handle the state’s current payment record. That is no excuse for the Graywood situation. They should get what they deserve, but there are also hundreds of well run operations that provide good care for many people. The people served range from individuals who simply need some slight support to others with serious, frustrating, behaviors. These organizations never pop up in the news because they have boring, routine home lives like most people. There are probably 3-4 in whatever town you live in and you have no idea they exist, which is a good thing. Are there problems? Yes. Find an employer in any setting that runs a 100% perfect operation (work comp, hiring, firing, employee relations, customer relations, etc.) 100% of the time. Stuff happens, stupid decisions are made, and (as in Graywood) ignorant behavior happens. Not an excuse. It is real and those situations need to be fixed. - Small Town Liberal - Monday, May 23, 11 @ 9:28 am: - As the story and posters have pointed out, the state facilities are rife with problems. - Apparently you didn’t quite understand the story. It points out that some of the state funded, privately operated group homes have had problems. In no way does it point out that state facilities are rife with problems. What it points out is that group homes are cheaper because they rely on very low paid workers, and possibly some more oversight needs to be put into place before going full steam ahead with group homes. - wordslinger - Monday, May 23, 11 @ 9:29 am: Cincy, your snarky driveby was that state facilities wouldn’t be closed down because they were staffed by public employees. That’s just a willful ignorance of the historical record. Illinois has closed at least 10 state developmental and mental health centers since the deinstitutionalization movement took off in the 1980s, with residents moved to private institutions. Illinois contracts out loads of services formerly performed by public employees to private, for-profit providers. - Give Me A Break - Monday, May 23, 11 @ 9:30 am: Texas is having a debate about this issue right now. Their state ran DD center staff are not union members but most of the DD centers are in rural areas and are the largest employers for miles. Seems the good conservative Texas lawmakers are dragging their feet at closing state ops. and moving to community level care due to the loss of jobs in their districts. - Anonymous - Monday, May 23, 11 @ 9:42 am: How many of you would want to live in a college dormitory for your entire life? How would you like to live out your life in something other people refer to as an institution? The reality is that human beings do better and are happier when they live in smaller settings where they can have some control over their own lives. It just happens to be that the smaller settings are less expensive than the great big ones. Illinois is ranked #50 out of 50 in services to people with disabilities. Mississippi finally has bragging rights that another state is worse than they are. When the cuts happened over the last ten years, they came out of the community and not out of the state institutions. Time and time again, Illinois politicians prioritize their own campaigns to re-elect over the needs of the most vulnerable people in our society. Brag about that in your campaign literature, why don’t you? - Aldyth - Monday, May 23, 11 @ 9:42 am: Oops. Anonymous at 9:42 is me. - Both Sides Now - Monday, May 23, 11 @ 10:05 am: Yes, the state facilities have had problems at times, and because of the deinstitutionalization movement and George (gee, he made a lot of poor decisions) Ryan some facilities were closed. But as pointed out, “Across Illinois last year, more than 130 cases of abuse and neglect were investigated and confirmed in group homes for adults, a 33 percent increase compared to 2006″ and that includes a death in eastern Illinois. Obviously, there are problems in group homes too! The media says we should shift money from the state facilities to the group homes because they are cheaper per resident and that’s what other states are doing. Do you really think if Illinois did this the additional money would go to the low paid workers? Or might it go elswhere? And didn’t your mother ever tell you just because everyone else is doing it doesn’t mean you should? After Ryan closed Lincoln Developmental Center, the State poured millions of dollars into the facility to upgrade it to meet new standards. About a half dozen “group homes” were built and are part of a quiet, park-like setting. But the facility remains empty while the State has to maintain at least a minimal budget for it. There are other facilities like this and there would be more if we moved everyone to a group home. Do you think we can sell them all to the federal government like the prison in Thompson? Can we adaptively reuse them instead of building something new somewhere else? Maybe, but that’s not happening in Lincoln! It’s time to think outside of the box. We have assets in property and assets in a budget. What’s the best way to use them? What impact will it make on communities and the state’s residents? Think creatively, and don’t make decisions based on “that’s how we’ve always done it” or “that’s what everyone else is doing”. And let’s not forget - the media is pointing the finger at Quinn but who is really making all the budget cuts this year? The General Assembly. Time for all our elected officials to put their thinking caps on. - steve schnorf - Monday, May 23, 11 @ 10:07 am: There are two major issues I don’t see being talked about anywhere in this dialogue. One, you need the community resources in place in order to move people into them, so you can’t close a facility until you do the upfront investment, and we don’t have any money to do it with. Minimum start-up lead time is about 12-15 months. Two, unlike many of you, I have actually hadsome experience with privatization of human services from both the community and the state perspective. Check my comments on the Anna Veteran’s Home in the TAB report. - Yellow Dog Democrat - Monday, May 23, 11 @ 10:35 am: Schnorf is right, moving folks from institutions to less restrictive settings is not an overnight process. On the other hand, it is a process that is mandated by the Americans with Disabilities Act. This change is INEVITABLE. And the sooner we accept that, the better. - Liberty_First - Monday, May 23, 11 @ 10:51 am: Unfortunately we are all living with the horrid state management under a booming economy. This is all proof that a progressive or socialist system is impossible. - Earnest - Monday, May 23, 11 @ 11:28 am: I am not certain the Anna Veteran’s home is a comparable example to downsizing institutions to smaller settings in a person’s own community. This was more a case of continuing the same service model simply run by a private corporation rather than by the state. The article about abuse and neglect in small group homes fails to compare this to the far greater amount of abuse and neglect in the state institutions. It is correct that, while the state monitors small group homes, it lacks the tools to address a situation like Graywood and that must change. Any level of abuse is intolerable, but people are far safer when they are a visible part of their own community than lumped into a large group, far away from it. - dupage person - Monday, May 23, 11 @ 12:10 pm: The unfortunate reality is this: wherever there are vulnerable people, abuse happens. I do not condone or excuse this reality, I just recognize it. It happens in institutions, it happens in group homes, it even happens, sadly, in family homes, particularly when families are overly stressed with the care of a challenging vulnerable person. The reasons for it are different in the different settings, and the meaningful strategies we can use to prevent it, to minimize it, and to deal appropriately with it when it does happen are also different. I don’t know how to eliminate it entirely. I wish I did. - Reality Check - Monday, May 23, 11 @ 12:36 pm: The total failure to engage with basic facts on this issue is quite shocking. For example, no one bothers to question the main talking point of those who campaign to close the centers: “Private facilities are cheaper.” Yes they are - because they don’t offer the same level of specialized professional and medical care and services, and because too many of them pay crap wages with no benefits. Further, amid all the hollering between various interest groups, no one appears to care what the people most directly involved actually think. Since the the state centers typically serve individuals with the most profound developmental disabilities, many cannot speak for themselves. But their family members do speak out, passionately, and they advocate for the state centers. If these places were bad, why in the world would these families support them? The problem in Illinois is a dire lack of resources for the total continuum of developmental care. We need more capacity in community-based homes and we need to raise wage and benefit standards in them to reduce turnover and improve care. We also need adequate resources for the state centers which provide a more intensive level of services that some individuals require to live and thrive. And we need stronger public oversight for the whole system, because as the Graywood and Alden Village scandals showed, private-sector advocates like ARC of Illinois and Equip for Equality who were outraged at the state’s Lincoln and Howe centers were blind to the faults of operators in their preferred setting. It is a travesty that the budget crisis is being used to set legitimate interests against one another. It would be much more beneficial for individuals with developmental disabilities if everyone would work together to provide adequate resources for every part of the continuum of care, rather than one subset attacking another. - steve schnorf - Monday, May 23, 11 @ 1:29 pm: Earnest, my main point re Anna was that once the wage and benefit disparity between public and private went away, there was no longer much financial “savings” That’s OK with me, I just don’t want people buying or selling a pig in a poke. When I worked at placing residents out of Lincoln and Kankakee (and to a lesser extent, a couple of other state-operated) more than 40 years ago, there were a whole lot of people residing in state-operateds simply because there was no place else for them. Thousands of those people moved out into communities in a matter of 20 years. Some went places that were better (unless you were there then, you can’t imagine how bad Lincoln and Dixon were back then), some went places that were a lot better, some went to the streets of Uptown. I no longer know enough about the people who live in state-operated facilities nor about the community alternatives that are available, but I suspect that many of the residents of Fox still need full-time high level nursing care. - TwoHand - Monday, May 23, 11 @ 1:37 pm: Most of these postings postulate on one side or the other. The small community based providers want their hands on more money to expand their current programs. Some are terrible, some do well. Large institutions are not all bad. Look at a private facility such as Misericordia in Chicago. It should be studied and replicated all over the state. The care, education, training and support at that facility is second to none in the U.S. Misericordia also recgonizes a balanced approach. They have community based homes for those who can live in that setting. There are many who cannot. This dicussion is pointless unless all sides admit that there are two usefull approaches to these issues and they are not mutually exclusive. Those who advocate for one form of care over another are doing a disservice to the debate and often times have a personal, monetary incentive. - Reality Check - Monday, May 23, 11 @ 1:44 pm: Schnorf: I suspect that many of the residents need full-time high level nursing care. Precisely. When the Howe center was shuttered last year over the strenuous objections of Howe families, only 43% of its residents went into private agencies, 57% to other state centers. More disturbing, the subsequent mortality rate of former Howe residents is nearly twice as high among those moved to private agencies as those who moved to other state centers. The rate of police involvement, hospitalization and other serious incidents is also nearly twice as high among those moved to private agencies vs. those who moved to other state centers. - steve schnorf - Monday, May 23, 11 @ 1:54 pm: If any one knows, exactly how many people are being long-term admitted to state-operateds annually now? Is the total inpatient census still going down by 50-75 a year like it was 15 years ago? Earnest, as to your point of in their own community. Unless much has changed (and it may have) a very high percentage of the residents in our state operated facilities don’t have a community other than the facility they live in. - Cathar - Monday, May 23, 11 @ 2:28 pm: Consider this in the debate to close state institutions and move people to smaller homes in the community: Problems at non-profit group homes are rare, but where they have happened it’s due to UNDERFUNDING. This can be solved by directing some of the cost savings from deinstitutionalization BACK to the underfunded, community system. The rife problems at the state institutions are DESPITE being funded at 5X the community rates. These facilities have dysfunctional employee cultures that are hostile to the people they serve. Therefore, these problems are incurable and the state system needs to be closed. Lastly, it’s an AFSCME myth that the state institutions serve more profoundly disabled persons than community providers - Mark - Monday, May 23, 11 @ 2:37 pm: I really don’t know if privatizing would solve any problems or not. I know of a mentally handicapped person whose necessary medication was cut because of Quinn cut backs. Ridiculous. Cute somewhere else Quinn. I am furious. The homes I have seen could all benefit from better care. I am not sure what the problem is or who is to blame. There are a lot of cruel people who prey upon the weak. I have seen a broken arm with no explanation, other than the person was causing problems, it’s nuts. The worse is when you walk in a group home and it smells. I am definitely an advocate of smaller homes. The worst offenses I have seen are at larger homes. - Reality Check - Monday, May 23, 11 @ 2:53 pm: @Cathar, if your extreme statements about state centers were anywhere close to true, why would the families of individuals who reside there advocate so passionately to keep them open? Also, since AFSCME represents some 5,000 people who work for private agencies and a like number who work in state centers, why would the union advance a myth such as you claim? - Rich Miller - Monday, May 23, 11 @ 2:55 pm: ===why would the families of individuals who reside there advocate so passionately to keep them open?=== One reason is that people just don’t like change. - Cathar - Monday, May 23, 11 @ 3:06 pm: Rich has it right. Basically the families are afraid of the unknown. But closing outdated facilities has happened across the country and it’s clear that people with disabilities benefit AT A LOWER COST. It has happened in virtually every other state, and it WILL happen here, it’s only a question of time. - Reality Check - Monday, May 23, 11 @ 3:27 pm: Cathar: Basically the families are afraid of the unknown. Apparently you don’t know much about these families. In many if not most cases they have placed their loved ones with state centers because private agencies have failed them. In other words, they know exactly what awaits them, and they don’t like it. And in the case of Howe families, sadly they have been proven correct: the subsequent mortality rate of former Howe residents is nearly twice as high among those moved to private agencies as those who moved to other state centers. The rate of police involvement, hospitalization and other serious incidents is also nearly twice as high among those moved to private agencies vs. those who moved to other state centers. - Irish - Monday, May 23, 11 @ 3:34 pm: The old adage is; You get what you pay for. So it’s not surprising that minimally paid people aren’t as invested in their jobs as those who are paid more. Whether these people are State employees or private sector employees you cut their pay, you are going to get less. Why this comes as a surprise to flks is beyond me. - JJ - Monday, May 23, 11 @ 3:38 pm: My son is a resident of Shapiro. He was previously in the community. After being dumped by the CILA in a hospital on the north side of Chicago he was brought by ambulance to Shapiro. The neglect at the CILA resulted in the following: 1) A helmet was placed on his head with no plan to remove it. The helmet remained on his head for almost 4 months. During that time he did not bathe and his head became infected. (Shapiro staff removed the helmet before he was taken off the gurney and he bathed within an hour of ariving - the helmet has remained off and he takes care of his normal hygiene daily.) 2) He was placed on multiple medications in dangerous doses that were ruining his health. Our son arrived at Shapiro in November and it will be mid-July until he is washed outs of the meds (There is no indication that any helped him). 3) Rather than take our son to workshop, staff intentionally antagonized him advising management that it was dangerous to transport him. We found staff sleeping on arrival at the house. 4) Our son is autistic and structure is extremely important. Staff was rarely consistent and had little to no training. 5) Our son lost 90 lbs in less than 6 months. They claimed he would not eat though we were notified only twice that he refused a meal. CILA response “he occassionally asked for a can of spagettios and we provided if he asked”. On one occassion when we brought food he stole it and locked himself in his room. (At Shapiro he eats 3 meals daily and has not refused food). 6) CILA claimed he would not go to workshop (At Shapiro he was at workshop the day after arrival and has gone daily ever since). I could go on and on - the point of this is - while the Community setting works great for some it is a disaster for others! If the community continues with the lack of oversight you will see many more cases of abuse and neglect. Our son was only a month or 2 away from serious medical problems that could have resulted in his death. If those who think that SODC are too costly - what will the cost be to investigate the abuse/neglect (4 OIG investigations were filed for our son). The cost of his botched health care has already cost thousands! Every parent I talked to has horror stories about their loved ones in the community setting. That is why they are in a SODC. There is a generation of autistic individuals coming into adulthood that will not be able to function in a small 3 bedroom home with 8 residents. Shapiro has been a blessing for our son! - Cathar - Monday, May 23, 11 @ 3:49 pm: Reality Check: The Howe closure was well-handled and was a success. AFSCME, as you know, is trying desperately to discredit it. Please provide a link to ANY of the allegations you have made about the Howe closure. - Cathar - Monday, May 23, 11 @ 3:56 pm: Here’s a great article that’s a must-read on closing the state’s institutions. As president of the Howe Friends and Family Association, Betty was among the most vocal opponents of Howe’s closure. Now, as the dust settles on the ambitious project to relocate 263 developmentally disabled adults, Betty is at peace with her choice of a small group home over a large state-run facility, which is where most of the former patients ended up. Mother, daughter find new life after Howe - http://goo.gl/5zWkG - wordslinger - Monday, May 23, 11 @ 4:19 pm: If nothing else, the wisdom we get from Schnorf and others, and the real-life experiences from JJ and others should tell is it this is not some bean-counting exercise, and not one-size fits all. It has to about standard of care for the individual, whatever the need, wherever it is, whatever the cost. We all go through every day knowing that some sharpies are knicking us on every level of government and in the private sector. The folks her are one place we don’t go on the cheap. They are, literally, dependent upon us. - steve schnorf - Monday, May 23, 11 @ 4:54 pm: Cathar I hate to seem too critical, but usually on this site it’s helpful to know what you are talking about before leaping in. It HAS happened here, and continues too. Perhaps you’ve never heard of Manteno, Galesburg, Rock Island, Adoph Meyer, Lincoln, Adler, etc, etc. Try to be informed. - Cathar - Monday, May 23, 11 @ 5:10 pm: Steve, I hate to be critical too, but maybe you need to get out of Springfield more often (and out of Illinois). We’re 51st in the country in funding community-based living for people with developmental disabilities. And we’re near the top in funding large institutions. Yes, a few outdated institutions have closed here over the years, but we’re still WAY BEHIND the rest of the country. You can get informed here Steve -http://goo.gl/5fduF - steve schnorf - Monday, May 23, 11 @ 7:52 pm: Actually Cathar, Meyer, Adler and some of the others that were closed weren’t outdated at all. And, there were twice as many residents at either Lincoln or Dixon than there are in the entire state ops system today, but I’ll try to get informed. Thanks for the insight. - Cathar - Monday, May 23, 11 @ 8:20 pm: Steve, Yes, Lincoln and Dixon were huge THEN, and it’s great they closed. But the progress in IL has been glacial, and the state ops system in IL is still huge compared to so many other states TODAY. Many states today have ZERO state ops. It’s time to save money and help people with disabilities. We need now a bold, multi-year plan to close our institutions like this one: http://goo.gl/lF38g - wordslinger - Monday, May 23, 11 @ 9:33 pm: ==the state ops system in IL is still huge compared to so many other states TODAY. Many states today have ZERO state ops.== The goal is standard of care. Deinstitutionalization is not a goal in and of itself, especially when you don’t back it up with community services. - Reality Check - Monday, May 23, 11 @ 10:04 pm: @word and schnorf, it’s no use arguing with this extremist. This is the kind of attitude that pervades elements of the private sector agencies which want all the resources (read dollars) for themselves rather than working collaboratively for a robust continuum of care and real choice as I articulated in my post at 12:36. To these people, word, yes, it does seem that cutting off any public option for care is the goal, vilifying anyone who disagrees is the means, and closure of every state center–damn the consequences–is the end in and of itself. - Stop the Spin - Monday, May 23, 11 @ 10:14 pm: Lots of spin here, Rich it is not about fearing change. Many of these families are some of the most educated people in the country in regards to these issues and have explored all aspects of the debate. There are places for both large residential facilities and for CILA homes. The CILA argument is continually “close the large facilities.” It is getting old. We have all seen many nursing home operators and others salivating at getting their hands on this revenue stream. A balanced approach is what is needed. Your comments that peopel don’t like change are dismissive and wrong. CILAs may be better for those persons at a high funtioning level. There are thousands of others in Illinois who need much more care and on-site medical support and programs. Let’s have both types and embrace the best of each, not one over the other. Sorry, comments for this post are now closed.