Be Very Thankful

I had a work flashback this week when I was thrown back into the world of acronyms. I thought I was visiting a nursing home and found to my amazement that I was instead standing in an ICF-MI. This is proof that you never know where you’re going to find yourself.

Excuse me for being obscure here. It’s just evidence of how social workers working in Illinois with bureaucrats and bureaucracy speak. Bureaucracies create long titles that are shortened to acronyms and used as shorthand. It speeds up conversation. I barely knew what an ICF-MI was. I have however been in an ICF-DD.

And ICF-DD is an Intermediate Care Facility for the Developmentally Disabled. That is the label the state puts on a type of reimbursed care setting for those Illinoisans who have an IQ of less than 70 who are determined unable to live independently. I was first in one, an ICF-DD, some twenty years ago when I visited Horizon South in Oglesby. I was there for some kind of a meeting. Horizon South was a nursing home taken over by a good local agency, Horizon House. To their credit, Horizon House as an organization worked hard to close Horizon South because they felt the people who lived there would be better served, more humanely housed, enjoy an improved quality of life, live with more dignity, in a smaller group setting. They were successful, much to the credit of the leaders of that organization, in creating and funding scattered site housing, and emptying that tired and worn out institution housing people who were perfectly capable of living with each other in small setting placed in regular neighborhoods throughout our communities. Bravo to Horizon House. Would that all agencies of their type done the same. Would that Illinois had funded such a system conversion.

There is a type of tyranny, maybe brutality, which exists when human beings are forced to live in such large scale settings. As a society we revel in such settings at times, especially in the case of prisons. There the milieu is deliberate, part of the punishment. Offend us? Live this way. See how you like it. We like it that the food is bad, the beds hard, the cells crowded, the environment austere.

There are few times in our lives when we exist in such a way. We live like that in the military perhaps, for periods of time. Basic training maybe. College dormitories are another example, though few are as densely populated and communal as those I inhabited in the 60’s. Students and parents just won’t have it any longer. Won’t pay for it. College students live increasingly in smaller settings. The dormitories with the long halls, the big group bath rooms, are pretty much things of the past. I lived in a dorm exactly four months before finding a way around the rules and moving into an apartment.

An ICF-MI is an Intermediate Care Facility for the Mentally Ill. Same big group concept. In this case 115 patients with the type of diagnosis that qualifies one for such care: schizophrenia, bi polar disorder, personality disorders, and more are put in an old nursing home, most likely built in the 60’s, and there you have it. On the entrance door a large sign “The use of video or still cameras without permission of the administration is not allowed.” Let me try to describe it for you. Video with audio would be more graphic. I’m sorry. Rules you know.

The day I visited it rained and snowed. As I walked to the entrance a back hoe was digging under the foundation near the front door. Once inside, after signing in, I saw a man on a ladder shining a light up into the suspended ceiling where a tile was pushed aside seeking a source for the water that dripped into buckets below.

Five corridors leading to a big day room with coin vending machines, one TV, a Wii play station. Little printed material. Lines of patients at the nurse’s office, the dietician’s office. Their doors are closed. The day room is filled with folding banquet tables. At the tables some people play a dice game, others do jigsaw puzzles, while some sleep, foreheads on the fake wood finish or cheeks and one ear pressed flat, mouths agape. While the TV blares, few watch. An extremely obese young man, wearing his coat and sweatpants, sits in a wheelchair trying to get the attention of everyone and anyone who passes. To each staff person, dressed in scrubs, IDs on lanyards, carrying clipboards, he speaks loudly.

“Why aren’t you smiling? You’re supposed to smile.”

To me he explains “We’re not all there, that’s why we’re all here.” When I don’t respond he laughs in a high pitched voice; laughs, and laughs.

A pay phone, the only phone for patient use, in a crowded area offers a brown cotton curtain for privacy there. But the conversation, wouldn’t everyone hear?

The person I was with, who had been in a similar facility, thought the day room was nice.

“I was in one of these a couple of months ago, and the halls from the patient room just led to a nurse’s station. There was no common area like this. I think they took them to the basement for activities, and it was hard to get them there. This is good,” he said.

Good, I thought? Were I forced to spend day after day in such a room would I think it was good?

The five corridors, long and narrow linoleum tiled halls, with doors to two person patient rooms, floors covered in the same brown tile, on them old hospital beds with hand cranks at the foot that no one uses, metal night stands and dressers, closets built into the wall. In some the plastic brackets that hold the rod are broken, so clothes are simply laid in the bottom of the large compartment. One nondescript picture of an unnamed seascape adorns one of four beige/peach walls. The bathroom is shared with the room next door. Shower down the hall. Hasps on the night stands, added later and attached with metal screws, yawn open with no locks.

I visit a person there in one of the small rooms. I point out clothes that were sent, the drawers that hold them, a book chosen that we thought would make good reading. Little interest is shown. It’s quiet in the room. There’s no radio, no TV, little really except for an old electric clock belonging to the roommate, and the picture. An artist’s rendering of a patch of ocean, light on the waves, dark sky. Maybe paint by number. It made us seem so far away from there. During pauses in the conversation you could hear the clock whir, the hands moving perhaps. Inside the room time passes slowly. As I was leaving the roommate came in.

“How long have you lived here?” I asked.

“Two years.”

I made my way through the day room to the front desk where I signed out.

“What are they digging for outside?”

“Grease trap clogged up in the kitchen. Turned out to be a bigger problem than they thought.”

“Do you have a lot of trouble with the building?”

“Yeah. Well, I mean, it’s old. Always seems to break down in the winter.”

I drove away, very mindful and very thankful of my ability to do so. Soon I was out of town passing through the peaceful space of empty cornfields. Winter is hard enough, I thought, without having an image of that day room in your mind.

The owners of that facility own ten such places. Private company. Perhaps this was their oldest, the facility in the worst condition. No way to tell. Maybe it was their best. The internet offered little information. They maintain no independent web page, the owners, so their online presence is controlled by others. I found an ambitious list of ICF facilities in Illinois that appears to have been designed so that a wealth of information, provided by the facility, could be shared with consumers. Little data existed. Staffing patterns were outlined, few nurses, surprisingly low ratio of mental health professionals. 11% of a full time psychiatrist for 115 patients. Sliver of a dietician. I could imagine the requirements behind staffing pattern. People you pay for because you have to have them.

The facility was called a nursing home though there were very few nurses there. It’s intermediate care. Physical disability and poor health is not the main concern inside those walls, but rather mental illness. Were the people inside not mentally ill they would live in the community. This is a private facility housing poor publicly funded patients. I would guess 100% of the people inside are funded by Medicaid. When you are poor you qualify for Medicaid and when you are mentally ill and unable to live on your own a facility such as this accepts you and provides care (think housing) collecting a daily fee for you based on those Medicaid rates. The condition of the patients earns the owners of the home a lower rate than what we think of as a nursing home. The rates are set by the state and reflect the money legislators budget for Medicaid reimbursement to private facilities. If you are the owners of this nursing home you put ten such place together and run it on a business model. Hey, someone has to do it.

Illinois has by and large closed its state facilities and instead contracts with private facilities to carry out its responsibilities to the mentally ill. It’s more flexible than maintaining state institutions. Annual state contracts can be adjusted to reflect changing need, and it’s cheaper. Staff are typically non union. The facility I was in has an occupancy rate of 96% because that is the economy, the business model if you will, of such places. Run full, maximize revenue, do the best you can with the dollars you are given. At least we hope they do the best they can. It’s a private for profit company after all. We have little but hope to go on.

Some societies have much less. America and Illinois at least has a system to care for the mentally ill. Should we be thankful for that system? OK, I guess we should. Can we do better? God, I hope so. Will we in the future? I see little indication we will. As far as I can tell this is not high on Bruce Rauner’s agenda. It is high on the agenda of very few people. We are beginning to develop and have developed beautiful places to house and care for our senior citizens, our properly insured and funded senior citizens that is. Options for the poor mentally ill remain few. Other options for my friend may be sought soon. I’ve been told not to be optimistic.

I’m about to take off on a solo road trip. I am very thankful on this day that I can. Be thankful for your freedom; your car, the ability to put gas in it, a credit card to charge a room for the night, the mental wherewithal to find your way to your destination. Independence and the ability to exercise it is a gift. Be thankful, be very thankful.