The Right to Refuse

I have started nursing school (hence the reason for less posts) and am learning things that I hope to be able to use in my work with individuals with intellectual disabilities. One of the things we talked about in class recently is the right to refuse aspects of care. A person has a right to refuse treatment, a right to refuse medications, a right to refuse exercises, and so on. There is a second piece to this, though, that we don't always address. When a person refuses something we think is in their best interest (based on information derived from science, evidence, and education), we have an obligation to discuss with them the potential consequences of their refusal.

In my undying love of using the exact right word, I think a better word would be "declined." The person didn't refuse my offer of going out to exercise, she declined it. The intent of declining something offered seems more polite. Most of the time, when I have been refused, it was polite.

Anyway, last week at one of the group homes, one of the men declined his medications. He absolutely has this right. Our job, then, is to return a few more times after waiting a bit, to see if he will change his mind. If he still declines, we call the doctor and that's that. It is important to realize, though, that missing some of these medications could cause him discomfort or harm.

In this case, staff asked my opinion. I told them to find out the function (or why) he was declining. The answer was that he wanted something he couldn't have (but that often causes him problems should he have it) and was displaying his discontent by controlling something he could control. The team working with him that day discussed which was the area of most concern - that he not receive the small item he wanted or not take his medications. We decided that day to give him the item. He took his medications and his mood turned around for the rest of the day.

Another staffer a few days later nicely suggested another way we could have gone. She said that when this fellow declines medications (or shower, or chores), she explains to him the consequences of his actions. The last time he would not take his medications, even though he was very angry about not being able to have something that belonged to someone else, she was successful in getting him to understand that he wants to feel better and control his actions better and that the medications help him with that. He was still angry but he did take his medications.

So chalk that up to about the 42nd mistake I have made this week (giving him the item). A better approach, as described in my nursing class and by my wise co-worker, would be to realize that the individuals we work with are smart and we can discuss with them the possible consequences of their choices. That would be another step in treating them equally.

You Know You're Doing It Right If It's Messy

I find most staffers to be very hard-working. They work hard to keep group homes clean. They work hard to make sure the table is set and attractive. They work hard to make sure the beds are crisply-made up, the laundry is folded, the windows are sparkling, there is no dust on the window sills. Dinner looks perfect, too. And the frosting on the cake is evenly distributed, no corners left unfrosted, with some swirls for decoration.

If the staffers were really working hard, though, many of those tasks would not look perfect. It's not that someone with a disability can't do a thorough job or does not have high standards, it's usually that they haven't had the opportunity to practice that skill or may lack the physical coordination or dexterity to do it perfectly.

One of the hardest tasks when working with individuals with intellectual disabilities is to put your hands behind your back and let their hands do the work. It is so hard to not be more physically active while you are working. It is very hard to exhibit patience as the person practices and completes the activity by themselves. And to continue to do that for the next eight hours of your scheduled work time. But that is what this work demands.

The group homes and day programs should be a little messy. Drinks should be spilling more often. And then guess who should go get the paper towels to clean it up? Windows should have streaks. The dinner table might not always be perfectly symmetrical once set. Actually, that would be normal. That's what my house looks like even on a good day.

A New Normal

I work in a field that is considered a branch of abnormal psychology. Yet the people with intellectual disabilities whom I support consider themselves to be completely normal. Even though we don't go out of our way to let people know they have a developmental disability, they still think they are normal. This is yet another way in which we need to be listening to them and valuing their feedback as to how they would like to receive services. If they think they are normal, aren't they? Is it the rest of us that impose the definition of normal? Differences are okay, as long as we recognize that we all have differences and we all are more alike than different. The people I work with are normal and it is important to them for us to recognize this. 

(Inspired by a post by fellow parent/blogger Sylvia at http://faithfulmomof9.wordpress.com/2012/08/31/our-new-normal-part-two/)

Behavior In Social Context

Individuals with intellectual disabilities tend to exhibit behaviors that cause them troubles in their lives. I wish there was another term we could all use because the use of 'behavior' tends to be one of those terms of inequality. If I go on a rant about being the only one in the house to wash the dishes, I go on a rant. If an individual with developmental disabilities goes on a rant, they are 'having a behavior' or 'having a tantrum/outburst' and they might need a 'behavior plan' to address the ranting. If I rant (or vent), it is because I was frustrated at the situation and was expressing myself. If a person with intellectual disabilities rants (or has a behavior), those around them think it was primarily a ploy to get attention, as if they are overly needy.  When I was ranting, I absolutely wanted attention, too. I wanted everybody's attention. But I was not considered an attention-seeker; I was being assertive in getting my needs met.

Most of us have a preconceived notion of what people with intellectual disabilities are. We are prejudiced. We prejudge the group of people with disabilities as having unfavorable qualities without truly knowing them. We think them incapable, eternally children, holy innocents, slow, and at times, dangerous.

When I say that I want us to consider behavior in a social context, I want us to think about the ways in which we have treated others differently because of our prejudice and to consider that they are behaving in the same way as any of us would under those circumstances.

First of all, instead of calling them 'behaviors', we could normalize the language and call them 'actions'.

So picture yourself in a social world where you are not heard because you are thought of as not intelligent enough to make your own decisions. If you are not being heard, what would you do? You would get louder. Your actions would be to yell, and still if no one was listening, you might pound something with your hand, or shake your fist at someone. This might be called 'maladaptive behavior' in the clinical world of intellectual disabilities. If I do it, I might be taking actions that are firm and decisive in my resolve to get what I need.

To be honest,  it would be highly unusual for me to lose my cool. It would take a lot for me to start yelling, venting, ranting, or raising my fist. But that's because my life is not in any way contentious. I get all of my needs met. I have been treated respectfully all these years. I have a certain amount of status. I have a family that loves and supports me and my many quirks.  I have a life that is productive and interests me. Place me in a social context where I have to rebel, and I would (I hope) fight to get my needs met by whatever means. If I found myself in a revolution, I'd take up arms.

My contention here is that individuals with cognitive impairments have been treated so differently or have lived a life so different from the rest of us around them that they have to act out to get their needs met. They don't have status. They are told what to do and how to do it every day of their lives. Most are not married or engage in intimate relationships. In the majority of cases, this is discouraged.  Most will not have access to things they want when they want them. Most will not hold down jobs, thereby not feeling needed and productive.  Most will be expected to wait patiently a good portion of their lives because they are often doing things in a group. This list goes on and on and you could probably think of so many more life differences on your own. Differences are okay, but not when they hinder, interfere, or harm another. Not when it breeds a revolution and we call it a behavior problem.