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* Reporters were taken on a rare tour yesterday of the Jacksonville Developmental Center, which Gov. Pat Quinn wants to close. The governor’s administration claims that the residents would be much better served in community settings, but some parents said they’d already tried that route. From Jacksonville’s WLDS radio…
Doctor David Iacono-Harris’ son Jonathan lives at JDC. He says his son has been in community settings twice. Both instances have yielded disastrous results.
“He has literally physically destroyed two group homes. He is not a candidate for the community,” says Iacono-Harris.
Janet Anderson’s daughter Elly Voth says she’s lived at JDC for 12 years. Anderson says the problems Elly has are best handled at JDC.
“She’s OCD. She tears her clothes. She’s incontinent. What she needs is a staff who can handle someone like that, who is educated,” says Anderson.
“She did live at a group home at Hope School in Springfield, and it was an absolute disaster. It was just hell every day. She always had a bruise on her. She had two black eyes that were swollen shut, and the eye doctor said it only had to come from a ball bat. She was overmedicated, ended up in the hospital for six weeks two different times, three weeks each,” she continues.
* Humans in general often don’t like change. But change can be even harder on the seriously developmentally disabled, so closing the facility will definitely have an impact at least for a while…
“Another transition, she’d go through hell,” said Anderson, voicing her concern over what will happen to her daughter if the center closes.
* From the SJ-R…
Many of the residents’ rooms are personalized with pictures and other objects. In one area, staff members were beginning to put up decorations for St. Patrick’s Day.
“Inside the building, we try to make it as homelike as possible,” Day said.
Rep. Jim Watson, R-Jacksonville, said people sometimes picture JDC as a virtual dungeon for its residents.
“The impression this is a stale environment I don’t think is accurate,” said Watson who also toured the facility Monday. “You see these rooms are like dorm rooms. I would argue some of these folks here live better than a lot of our senior citizens who go to nursing homes.” […]
The boiler is so old replacement parts must be fabricated individually because they are no longer manufactured.
* WAND TV…
* Background…
The trend toward deinstitutionalization of the developmentally disabled has steadily accelerated, following passage of home- and community-based service waivers under the Americans with Disabilities Act of 1990.
But Illinois is an outlier in that trend. It ranked sixth nationally in public and private institutionalization in 2006, with 63 per 100,000 developmentally disabled individuals living in institutions. It ranked last in the proportion of persons served in residential settings that support one-to-six people. […]
Community services spending in Indiana, adjusted for inflation, grew by 85 percent between 1999 and 2008, while institutional spending declined by 81 percent. In 2006, Indiana committed 88 percent of its total developmentally disabled resources to community services, compared with 64 percent in Illinois.
Discuss.
posted by Rich Miller
Tuesday, Feb 28, 12 @ 10:24 am
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It should be said that nearly all advocates in this field support these closures. The fears of parents and the instances of not fitting in community settings shouldn’t paint a broad picture that this is bad for the disabled.
That said, the safety net isn’t disappearing entirely, and some state services will still be provided.
Comment by One instance Tuesday, Feb 28, 12 @ 10:28 am
At least the focus of the article is on delivery of services and not state jobs.
The heart bleeds for these folks. If you’re blessed with healthy, happy kids like I am, everything else is small potatoes.
Comment by wordslinger Tuesday, Feb 28, 12 @ 10:36 am
I really feel for the most vunerable in society, and the heartbreak these parents have to yet again endure.
“Humans in general often don’t like change. But change can be even harder on the seriously developmentally disabled, so closing the facility will definitely have an impact:
That says it right there, and actually more of an impact on them and their families. They don’t have the options that your average person has, their options are so limited. This is a really sad situation.
Comment by 3rd Generation Chicago Native Tuesday, Feb 28, 12 @ 10:48 am
I feel awful for these people, and I hope the rest of the state does, too. There is no magic stash of money the state is just sitting on, cuts are going to hurt. Until folks get serious about supporting reforms on the revenue side of things, these are the options on the table.
Comment by Small Town Liberal Tuesday, Feb 28, 12 @ 10:50 am
I would like to see an in-depth piece on the ways that other states have made this transition successful for the people they serve.
Comment by soccermom Tuesday, Feb 28, 12 @ 10:54 am
These people are served by the invisible side of state government. For those who rely on it, this institution is the most critical thing imaginable. For the rest of us it seems we ignore it or pretend it isn’t our responsibility to care for these people, our neighbors. That we let JDC’s infrastructure deteriorate to this point with no replacement plan shows how little we value these institutions.
This story is heartbreaking for those who will be moved, but it is also just the tip of the iceberg. The human side of the budget cuts will bring a lot more heartache to a lot more people.
It’s shameful that we’ve been such poor stewards for so long that we let it get to this point. We have only ourselves to blame, but we’re also the only ones who can work to get it right next time.
Our government needs long term thinking, stable finances and shared responsibility. When will voters reward these attributes instead of electing someone who simply spouts feel-good slogans and empty promises?
Comment by 47th Ward Tuesday, Feb 28, 12 @ 10:57 am
Too many of the advocates of community based services run the “businesses” of community based services. Many entered the profession of helping for noble reasons and unfortunately become businesspeople.
It seems that we shouldn’t take care of the unfortunate in the most cost-effective manner, but rather in the best manner possible for their well-being.
Comment by Cassiopeia Tuesday, Feb 28, 12 @ 11:00 am
Illinois has been trying to run a dual system of state institutions and community agencies for decades. This means that neither is funded at the level it needs to be.
As a general rule, human beings function better when they live in home sized environments. How many of us would voluntarily live in the equivalent of a college dormitory for our entire adult lives? Why would we think that people with developmental disabilities would function in large group settings any better than we do?
Yes. There are a few extreme cases where a person cannot be served safely in a community setting - fire starters, extremely phyically aggressive individuals, sexually aggressive individuals. They are folks who if they didn’t have a disability would be in prison for engaging in those behaviors. Those are a few cases that could probably be served in one single state facility. Everyone else could be moved and served at a considerably lower cost than taxpayers are covering now.
Comment by Aldyth Tuesday, Feb 28, 12 @ 11:08 am
I’m told some of those maintenace costs the administration is citing are absolutely ridiculous. If you really want to save money you could always discontinue the on-site power generator and use the Ameren lines like a normal state facility.
That said, I’m willing to bet the facility was shined up nicer than it is on any other day so it wouldn’t look so bad on camera.
Comment by Dirty Red Tuesday, Feb 28, 12 @ 11:22 am
“At least the focus of the article is on delivery of services and not state jobs.”
Couldn’t agree more. SODCs exist to treat patients, not to give people jobs. Although there’s no denying that JDC’s closure will be a big blow to Jacksonville’s economy.
Actually I think this dual system of SODCs and community agencies was a pretty ideal balance. Less intensive patients could be treated at a lower expense in the community, while medically fragile or even dangerous patients find placement in the more controlled environments of SODCs. Forcing everyone into an imaginary “one-size-fits-all” setting just won’t work.
Comment by Solomon Tuesday, Feb 28, 12 @ 11:26 am
At the Warren G. Murray Developmental Center in Centralia, less than 10% of the nearly 275 residents would qualify to live in a CILA facility, in fact, many of its current residents have come from group home settings.
Add to this the fact that Murray brings in almost $10 mil for the state each year makes the proposed closure of the facility ridiculous.
Why give up a safe home for these residents in an environment that adds money to the state coffers?
Comment by transplant Tuesday, Feb 28, 12 @ 11:34 am
Aldyth, I would rather be voluntarily dead, rather than live in an institution, and I include nursing homes. But euthanasia and assisted suicide are illegal.
Some of these people need full-time care; they are incapable of living by themselves, or even in a group home.
They are not capable of voluntarily choosing where they live, just as an older person may be involuntarily forced into a nursing home.
Consolidation of facilities may help with expenses, but it should be done with an organized, planned approach. I don’t believe that Quinn (and a LOT of legislators) care enough to do that, all they see is the $$$$.
Comment by downstate commissioner Tuesday, Feb 28, 12 @ 11:54 am
Transplants comment about Murray applies to JDC also. Very few of the people living there were born there. They previously lived somewhere in the community. Some series of events happened that resulted in their moves to JDC. There are people living at JDC who could move to a CILA or other residential programs. They move out regularly and others move in who have had serious issues in a community spot. The issue becomes supports. I keep hearing that on average it costs $165,000-$185,000 to live at JDC and about $50,000 in a community setting. The assumption being: move to a community setting and save $110,000+. Sounds nice, but the costs in JDC includes medical and medication. The community costs do not. That will be additional Medicaid costs. Averages also mean that over 50% of the people cost more than $185,000 and 50% less. The focus seems to be that all people can be supported for $50,000. How do you provide for anyone costing far over $185,000 for $50,000. At $50,000 each those CILAs need at least 8 people to survive and they still end up with $10 hour staff with high turnover. If JDC closes and Murray closes, there will be no place from around Chicago to Anna for emergency placement.
Comment by zatoichi Tuesday, Feb 28, 12 @ 12:07 pm
Smart families understand that when their family member with a disability is in a state operated facility, the state will continue to pay its bills, including increases in costs-of-living.
Their greatest fear is that once in a community operated group home, the pay scale for a direct support worker drops by 20%. The community organization has to wait 6 months to get paid and over the course of 20 years, is 50% behind in cost of living increases compared to what the state pays itself.
The concern is not just for today, but over the lifespan of their family member.
Comment by ElvisO Tuesday, Feb 28, 12 @ 12:13 pm
Do lawmakers think that giving tax breaks to CME and Sears is more important than taking care of these individuals? I hope Representative Watson and Senator McCann will lead an effort to rescind those corporate tax breaks and keep acksonville for the individuals who need it.
Comment by truthteller Tuesday, Feb 28, 12 @ 12:17 pm
The JDC families give us the true picture of our badly underfunded service system for people with disabilites. At the DHS budget briefing last Wednesday Julie Hamos said one of the things on the table if the state is going to cut Medicaid by $2.7 billion is eliminating long term care for DD, including the group home waiver program. And she made it clear community services are going to have to live with a 6-9% rate cut. But the same providers are expected to serve the folks at JDC and Murray who have the most extreme needs. As usual, the Quinn folks don’t make any sense.
Comment by Jeff Park Mom Tuesday, Feb 28, 12 @ 12:38 pm
@Jeff Park Mom
Very well put.
Want to close Developmental Centers? OK.
Want to reduce community care services? OK.
Want to close Developmental Centers while reducing community care services? Not OK. Problem.
Comment by Shock & Awww(e) Tuesday, Feb 28, 12 @ 1:08 pm
These are compelling stories that indicate a need for some institutional facilities such as Jacksonville. However, the question is (or should be) how many people need this level of care and how can that need be best met. There needs to be numbers to indicate how many people are at each level of need, and there needs to be an assessment of the facilities that are used to determine if they are adequate.
A proposal to close a facility needs to be backed up with some details on where people will be moved (and why that is appropriate) and why that facility (or part of it) is no longer adequate.
It would seem to me that downsizing and upgrading each facility might be more appropriate in order to keep those in high-care facilities closer to their loved ones. This would also spread the economic impact and lessen the blow to individual communities.
Comment by Pot calling kettle Tuesday, Feb 28, 12 @ 1:29 pm
Rep. Watson voted against the temporary income tax hike. He says the state needs to just cut spending. Now he opposes closing state facilities. How do these downstate Republicans get away with it?
Comment by reformer Tuesday, Feb 28, 12 @ 1:45 pm
It takes time, more than a few months, to develop and enact any real and good changes to the DD system in a state. No one should expect that suddenly things are going to be fine and dandy to move people out of state ops to community programs, or to move people already in the community around to make room for the people from state ops who need more intensive services.
Staff who participate in program planning at facilities, both state op and community, discuss at annual meetings what the optimal placement is for a person, as well as what supports are needed so they can maintain that placement. One doesn’t just decide on a random Tuesday, “Fred” can move out.
We are truly jeopardizing the neediest among us by thinking Illinois can change the system so quickly just because there is a budget shortage. This has been a surreal journey and one that won’t be over soon.
Comment by Wickedred Tuesday, Feb 28, 12 @ 2:08 pm
@reformer
LOL. Democrats vote for the temporary income tax hike. They say the state needs to just raise revenue while mocking proposals to cut spending. Now they want to close facilities, slash services and cut spending anyways. How do these Cook County Democrats get away with it?
Comment by Shock & Awww(e) Tuesday, Feb 28, 12 @ 2:08 pm
There is a solution to the Medicaid and pension dilemma (sounds like the closure of JDC and other facilities is the right thing to do and should proceed independently of budget concerns). It is to raise income taxes-beyond making the latest increase permanent–on both individuals and corporations. Not wishing to sound naive, but why isn’t that being discussed in the legislature as an option, in our heavily gerrymandered state. How scared are our legislators, really.
I am not in favor of this option, but I certainly wouldn’t automatically rule out voting for a politician who talked about it honestly as an option, with pros and cons. I’d look at his/her total record.
Comment by cassandra Tuesday, Feb 28, 12 @ 3:18 pm
S&A
Voting to increase revenues while reducing spending strikes reasonable people as a balanced approach to resolving our budget crisis.
On the other hand, there’s a certain hypocrisy to opposing higher taxes, demanding cuts, and then saying not in my backyard. “Cuts for thee, but not for me.”
Comment by reformer Tuesday, Feb 28, 12 @ 3:25 pm
Is anyone considering what is best for these people. They need the care they are receiving. Community providers are not quailified to handle these fragile individuals. Community providers hire people just out of high school. They do not receive training and the individuals are drugged when there are behaviors to deal with. We are going to spend money to fix school buildings, but take away from the people who need it the most. I guess we know what is important to this Governor, and it is not about the people of Illinois.
Comment by Considering Tuesday, Feb 28, 12 @ 3:53 pm
The push to close these facilities reminds me of the federal move in the 80s when mental hospitals were emptied and almost overnight our homeless population exploded.
This is not an episode of “Life Goes On.” The majority of the residents at these facilities could never care for themselves. You will not see these individuals sacking your groceries at the local store as many are non-ambulatory and suffer from severe Autism disorders.
Comment by transplant Tuesday, Feb 28, 12 @ 4:01 pm
I’m shouldn’t be, but I am quite shocked by the amount of intentional anxiety being created regarding this blog post.
I’ll just go ahead and feed it then and ask why Representative Watson and Senator McCann haven’t requested an appropriations bill to keep JDC open and build support by lobbying colleagues to support the appropriations.
This demonizing community providers and institutions is completely unproductive.
Comment by Leroy Tuesday, Feb 28, 12 @ 4:03 pm
I am both a professional in the field and legal guardian of a relative who lives in a group home in another state. My family member has severe mental retardation and autism. I’ve been asked before if I would bring my family member to Illinois and I have always said that I would never do so. My family member would be in a state institution in Illinois, because of physical aggression to a level that injures other people.
However, in the state where she lives, she’s in a three person group home. She has 24/7 care, which is absolutely necessary for her safety and due to her inability to care for herself.
I have sat on both sides of the table. I can tell you that it is entirely possible to provide community based services to individuals with very severe behaviors. With the services of a good psychiatrist, behavior analyst, and trained professional staff, her aggression is way down. She does much better in the three person group home where she isn’t overstimulated or overstressed by exposure to too many other people. In a large state facility where she would be around dozens of other completely egocentric individuals with behavior issues, her behavior issues would be far worse.
If you are going to pour the money into state facilities at $90,000 a year for one person, you aren’t going to have the money to support difficult people in community settings. It does not cost 90k to support my family member in a community setting, but it costs more than what Illinois pays for community residential. Without that level of support, my family member wouldn’t make it out there.
As I have said before, Illinois is trying to run a dual system of large institutions and community agencies. You can afford one or the other, but you cannot afford both. There are states that have closed all state institutions in favor of community placements and it works.
http://ici.umn.edu/products/prb/161/default.html
It isn’t easy to make these changes. The idea can scare families, but it is possible to make the change and have it work. As long as Illinois keeps pouring money into big institutions, the community agencies aren’t going to have enough state funding. Illinois will continue to rank #50 in the United States for services to people with developmental disabilities.
Comment by Aldyth Tuesday, Feb 28, 12 @ 4:17 pm
I don’t mean to point anyone out, but people really need more education on this stuff before you say things, indicating that the closures are the right thing to do regardless of the budget.
And, I have worked on both the community and state side, and I have a relative with a disability, so I do have knowledge of the system.
At this time, Illinois’ community providers are not equipped to deal with a lot of the behavioral and medical problems people in state ops have. We take in people who can’t be “handled” in a community setting and are able to help them get back out into the community. Where I work, we have a very high placement rate. We strive for less restrictions, but not everyone is able to be in a CILA or smaller group setting.
Til Illinois starts providing the money needed to community providers, and not for running the place, or the executives, but for the truly underpaid, hands on staff, and until they provide more training for the people who work in the homes, there will always be a need for state services. 24 hour active treatment 7 days a week.
Do you think that people, when kicked out of a home, thrive sitting in a hospital psych ward for months? They don’t provide active treatment or staff trained to work with the individuals.
Fixing the budget by closing facilities without having a well thought out, money included, plan for community providers to work with everyone.
Comment by Wickedred Tuesday, Feb 28, 12 @ 5:34 pm
I have been too far removed from this issue for too long to pretend to be any sort of expert, but I have some observations that may add historical perspective.
Illinois has been in the process of closing its state operated institutions for persons with developmental disabilities for many years. Very few on here could name the facilities no longer extant that were operating 40 years ago, or even roughly estimate the number of disabled persons living in them at that time. Also, a large number of dual diagnosis individuals lived in MI facilities.
At that time the staffing ratios in the facilities were very low, group living at it’s almost unimaginable worst.As the deinstitutionalization process unfolded, a concentrated effort was made to allow the state op facilities to keep their headcount in order to raise the staffing ratios. Of course, that meant community alternatives had to be funded out of new dollars, not savings.
The first “alternatives” were a mixed bag, including the the group home based state facilities in Tinley Park, Waukegan, and I forget where the third one was. Subsequently there came the (roughly) 100 bed state built community operated facilities (SLFs?-does anyone remember?) during Governor Walker’s administration. There was one in Peoria I think, one in maybe Swansea or O’Fallon, a couple of others. They were the quintessential progress of their day, and are surely anachronisms today, if any of them still exist. Still, all with new money to operate them, and additional new money for the necessary day programs that supported them.
During this same time, the State was using the Zone Centers for short term inpatient care, respite ,and so forth. It was very difficult to get admissions into the larger state operated facilities, and the reduction of the inpatient census continued. By this time several state operated facilities had closed, including Bowen, Rock Island, Galesburg, Manteno and perhaps one or two others.
Concomitantly, a sizable number of for-profit and some non-profit large (100 bed plus or minus) options had been developed, basically using Medicaid to pay for eats and sheets while DMH/DD grant and purchase of care money (still all new dollars) were used to buy day services from community non-profits. While all of those were improvements on what I had seen at state ops in Lincoln and Dixon, some of them shortly grew to be problematic. I still remember the DMH/DD Director asking me at a function in Peoria what it would cost him to move some number (40, maybe) North Aurora residents into some community programs I was involved with at the time. Of course those facilities are now anachronisms also, and I have no idea how many, if any, are still operating. But still, the commitment remained to leave the staff at the ever-shrinking state ops to improve staffing ratios, and that meant the cost per resident was ever-rising.
During this same time some community programs were opening Community Living Facilities (CLFs), typically 15-20 beds, that were definitely community based, probably best described today as boarding home/life skills training/assisted living facilities. I have no idea if any of them remain or what they have morphed into, but still far too large to be considered “good” by advocates today.
During this entire time, the most vocal and assertive opponents of deinstitutionalization were the MR/DD parent groups at the state operated facilities. AFSCME wasn’t terribly actively opposed, since it wasn’t yet costing them jobs, but the unions did see the handwriting on the wall and did start to organize some of the larger community non-profit providers.
Sometime in the 90’s I remember a state rep asking if we intended to close a specific facility, and I really answered that we didn’t have to, it was slowly closing itself every year as the inpatient population declined. And for a long time that seemed to me to be a satisfactory answer. Were we behind other states? Yep, but the trend was in the right direction every year, and relatively painlessly.
I don’t know what the inpatient census is in state ops today, I would guess maybe 2500 give or take. 40 years ago Lincoln and Dixon EACH had more residents than that. Without looking it up, I would be fairly certain that the year-end population of the state operated DD facilities has declined almost every year for the past 30 years.
But recently we have run into a serious barrier. With the state’s severe budget problems there is no “new” money with which to fund community alternatives. Remember, there are no savings when sate ops populations decline by 1 or 2% a year. You get some savings when you can collapse units and close a unit, but you only get big savings when you close a facility.
So, that’s a quick and dirty on how I remember it unfolding. We’re facing the same thing with home care programs for seniors. Even with our aging population the number of days of care we pay for in nursing homes hasn’t really risen. But the funding for community care alternatives came from new money, and there isn’t any of that now.
Comment by steve schnorf Tuesday, Feb 28, 12 @ 6:04 pm
Agreed with Aldyth. Illinois does not somehow have the most exceptionally disabled people in the country. If 14 other states are free of institutions for people with developmental disabilities, Illinois can do it too. A smart plan to develop and enhance community based services is key.
Everybody wants to see Illinois do the right thing. That does mean serving the needs of people with disabilities first. JDC residents should not be held hostage to the demands of labor union folks; their rights should not be abrogated because someone wants to keep their job.
Agreed that Watson and McCann need to get smart about how to ensure that appropriations go into their community. Media stories don’t make money magically appear.
Comment by Quill Tuesday, Feb 28, 12 @ 7:01 pm
@Shock & Awe:
I believe Democrats were EXTREMELY clear that even with a tax hike, there would still need to be cuts.
If they didn’t think that demand for services would exceed Revenue, there would be no need for a spending cap.
Republicans seriously, SERIOUSLY failed to think through their lockstep opposition to the temporary tax hike.
Everyone saw these closures coming. Per capita, state institutions - corrections and human services — are our most expensive service.
If Cross had put 12 votes on the rollcall for a tax increase — ANY twelve votes — he would have secured a commitment from Madigan and Cullerton to oppose the closures.
What did they gain by voting against the tax increase? Zip.
Comment by Yellow Dog Democrat Wednesday, Feb 29, 12 @ 12:23 am
As long as Illinois keeps pouring huge amounts of money supporting large institutions, there isn’t money to support difficult people in community settings. A person with severe behavioral issues who hurts himself or other people costs more to serve than a person without those issues. Illinois pretty much pays the same amount to a community provider for both individuals. When you have to keep a staff person on in the group home to deal primarily with that single individual, you bust your budget. I will repeat this until I’m blue in the face and everyone around me is sick of hearing it. You cannot run a dual system of large institutions and community agencies and fund either adequately. As long as Illinois keeps pouring the millions into the big institutions, the community agencies will not have sufficient funding to do the job they have the potential to do. Until Illinois consolidates those institutions down and shutters the oldest ones and transfers some of that money into community-based services, the community agencies will not be able to serve the most difficult cases.
Comment by Aldyth Wednesday, Feb 29, 12 @ 7:22 am
It seems that there’s quite a few people that hasn’t walked the walk and until you do then I would suggest that you need to get educated on the rights of the disabled. They are to be entitled under both federal and state law to ICF/MRs which includes SODCs and private ICF/DDs. They are entitled to the same level of care that they receive in a state facilty. Sure you can say “It’s a nice community home” but unless you have the staff that can handle the situation whether it be a resident that has a behavioral problem of violence or a resident that has severe medical problems and needs 24/7 nursing care. Then it’s an injustice that has been served those residents. That’s where the guardians can say “NO.” The death toll from LDC closing was 29. How many will die from this transition? I, as a guardian have the obligation to ensure the safety of my loved one and this plan is not a safe plan. JDC is a safety net for the residents that can’t make in the community. Where’s the safety net after all the state faciluties are closed? Nursing homes,jails or the hospital psych wards?
The Governors team is talking 2-4 beds homes and 3 bed and under can be unlicensed. Seriously ? That’s a disaster ready to happen. But it will be our children that will ultimately be the victims.
Comment by for real Wednesday, Feb 29, 12 @ 6:55 pm
Moving 20 people a month w/o money in place to ensure desired outcomes are upheld. Medicare decreasing money for desperately needed services and supports, ie eyeglasses, wheelchairs. Medicaid taking months to years to pay their bills so where do the people get their dental, reg check ups, medication, etc at when the money isnt available for the providers to provide services? Gov Pat Quinn you are essentially sending individuals to a pseudo college called, “Hard Knocks” of Life. Who is going to be responsible for the backlash when your pseudo college plan fails?
Is it reportable to OIG for the mental injury you are causing the individual’s who are being told to “trust” the Governor’s office to give them a new home that doesnt even exist yet, and you must find elsewhere?
Comment by Jenny Lynn Monday, Mar 5, 12 @ 8:08 pm