by, Renee Wood
Our society is embarking on a change in how it will provide long-term care services. We are moving from institutional based services (nursing homes, ICF/iid’s, group homes, etc.) to community based services (setting such as homes and apartments where the individual needing services is in control). I 100% support this model, but my instincts are kicking-in and showing me the new institution of the future.
In the past, when one spoke of “institutions” it conjured up images of big buildings run by the States, that were filled to the max with what society deemed as “undesirable people”, not fit to be seen in pleasant society. Not much money was set aside for State-run institutions, but even in the best ones it was an undesirable way to live out ones’ existence. Once one was “committed”, there was little hope of getting out. In the 70’s, citizens peered into what was going on in these places; filth, neglect, abuse, little or substandard food, etc., and freedom was a virtually unknown concept to people who survived these places. Once the public realized the conditions in large State-run institutions, de-institutionalization happened rather quickly, some claim it was too quick in that it did not allow adequate time for an infrastructure to be set-up to assist these people in the community. Whether or not de-institutionalization happen to quickly probably depends on which side of the door one resided, but this is a discussion for another day.
As a remedy to these institutions, society put money into smaller places that were more open to family visits, quality medical care, and more staff to care for the resident’s daily needs. In physical appearance at least, today’s nursing homes, group homes and ICFs/IIDs are a far cry better from the large, ill-kept, neglectful State institutions, but there are more similarities than differences. For one to live a fulfilled life, they must have freedom to be. The measure of freedom is how much say a person has over his daily schedule, do they have a key to the place they call “home” so they can come and go as they please, do they need to ask permission to do things typical people just take for granted; having a cigarette/beer, going to the movies, making love, getting married and spending extra monies on things that are important to them? Do they make a list of help they need and implement it with attendants, or are they just present when the list is created and expected to sign it after? Do they need to defend everything they want, or don’t want to do? Are they allowed to make mistakes with only suffering natural, if any, consequences for their actions? Or are they under constant scrutiny of staff and SSAs of their actions? Is every mistake written and recorded? Is every time they use the restroom recorded? (Wonder why there’s such a high correlation between DD and mental illness and/or behavioral issues? – this could be the missing link)!
Just as important as actual freedom is “perceived freedom”. There was a psychological experiment done by David Glass in the 1970s where subjects were given tasks to do and construction noise was introduced during the tasks. To summarize, a number of groups were given various levels of control over the noise from one group being told they just had to deal with it and do the best they can, to another group, where each individual was given a button they could push that would alert the construction crew to cease, if the noise was too disturbing. The former group that was told to just deal with it, didn’t do as well with the tasks as those who were given more control. While no one in the later group pushed their button, they did a far better job on the tasks. Why? People can tolerate more when they have the perception that they are in control to change their circumstances.
In this experiment, I would have introduced another control; individuals given the same button to stop the noise if it became unbearable, (and plant a subject that would use the button in case no other subject pushed the button, or make the noise so intolerable that someone would use the button) but allow the noise to continue when the button was pushed! The instructor tells subjects to be patient, but the noise still continues in spite of numerous subjects pushing their button. These subjects were led to believe that they had control to stop the noise, but they really didn’t. What per se would happen in this scenario? My hypothesis is that the tasks would no longer take precedence in their mind, but the renege of the promise would become the subjects’ primary concern, so they would start to exhibit similar problems in performance, if not worse than the group who KNEW that they had no control. This is the scenario we have in the system today.
Let me connect this with the “perception of freedom”. No one on earth is TOTALLY free – that’s just an illusion. But people do have some control over their personal environment and what goes on there. Example; a person who lives in their own apartment, if they so desire, they can get up at 1 am and have a bologna sandwich – no questions asked. How often do they do this? – seldom if ever, but their perception is; “I can if I want”. There’s a sense a freedom there. They may not even be able to physically get themselves out of bed to actually get the sandwich, but their perception is; “My refrigerator, my bologna, no one to say ‘no’ so I’m free to have a bologna sandwich”. If they were in an institution, although allowed to have a bologna sandwich at 1 am, and even someone there to get it for them, their perception might be; “How many request forms do I have to file? Is the good staff on tonight, or staff that will give me guff? If staff does give me guff, should I argue, or file a complaint, or is a bologna sandwich even worth it”? They didn’t buy the bologna, or own the refrigerator and they certainly don’t hire and fire the institution’s staff, so what right do they really have to ask for a bologna sandwich at 1 am they feel.
They only difference between HCBS (Home & Community Based Settings) and ICD/IIDS & DCs are the individual “owns” their environment/space (apartment/house) and everything in it. But an apartment within the community can be similarly as institutionalized as a Developmental Center or ICF, if that person lacks any sense of control. Equally true is, if a person resides inside the walls of a so-called institution (assuming they’re there by choice and are free to leave without a hassle), and has the perception of control to have a bologna sandwich at 1 am, these individuals may actually have a perception of freedom and control, so therefore have a good life and feel happy.
On paper people with DD are being told they have certain rights and control over their lives in the community, but when they try to exercise it, they are told to be patient, or they are put off. So in essence they really don’t have control. This is because in-home staff is trained with the same control mentality (medical model) as the institutional staff, so it’s actually no different than living in an institution. My concern is that those factors that the system will use to measure success in the community will not first establish if that individual’s core need for the perception of control is being met. I realize it may sound so base, but it would be equivalent to measuring employment outcomes after developing state of the art employment programs in Ethiopia, without addressing hunger first, and wonder why there wasn’t a significant change in employment rates. If the underlying perception of lack of control is not addressed in the DD population first, we may not see any change for the better in behavior of people with DD, or their quality of life. As with the subjects in the experiment, until the freedom to control their environment was perceived, the subjects didn’t do as well with the tasks.