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Case study: behaviour and support

In this video, Shooshi Dreyfus discusses how challenging behaviour can be a form of communication for people with complex communication needs.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. Supporting challenging behaviour.
SHOOSHI DREYFUS: My name’s Shooshi Dreyfus, and I have three boys. My middle one’s called Bodhi, and he has a severe intellectual disability. So in terms of the biggest issue in Bodhi’s life, I would say it’s challenging behaviour, in terms of his ability to function in the world and our ability to live with him. So in terms of challenging behaviour for him, I mean things like kicking doors, knocking chairs over, or– he broke all our chairs. Because he’d go in the dining room and flip them over and they’d bang on to the tile floor, and eventually they all broke. Breaking toys, banging windows.
He even broke a windscreen once by sliding down in his feet in the front seat of the car and kicking the windscreen out. I mean serious challenging behaviour, as well as scratching and pulling hair and hurting people. And not maliciously, and the thing that I found really hard for him with challenging behaviour was that if ever it’s construed as naughty– they’re being naughty, they’re doing the wrong thing– it’s never naughty. And I really loved the expression that for people like him all behaviour is communication. And that you have to look under that and say, well, what is this person trying to communicate? And we really struggled with challenging behaviour.
And we really needed a lot of help and a lot of breaks. We couldn’t take him out all the time because he was bored at home. And he was bored at home, but he couldn’t find anything to do. And that wasn’t his fault. He can’t help he’s got a disability. He can’t help he doesn’t speak. He can’t help he doesn’t understand how the world works. And he can’t help that he’s frustrated because of all those things. So support for challenging behaviour was hard to find. Good support was hard to find. People who knew what they were talking about was hard to find.
And I did a lot of the research myself, and we had to get these really high intervention teams. And even then I don’t actually think we’ve got a lot of expertise in Australia around challenging behaviour. And we certainly don’t have the funding to support the getting of expertise in that area in this country. And you know, I went to this information station by a behaviour support person from America, who showed a study– or from Canada– who showed a study of a person who tipped chairs over in a group home, and how they conducted an intervention, which gave her a communication device that allowed her to communicate her needs in a more appropriate way. And staff were all trained.
And she stopped tipping chairs over. But it’s high level intervention that involves a lot of observation, a lot of functional analysis of behaviour, a lot of training of people, families– everybody that works with or is in that person’s life. But that’s what’s required. And the more people that are skilled up on it and the more support there is for that as an issue in itself, I think the better it is for people who have challenging behaviour. Because they’re only trying communicate either their frustration, their boredom, their need for something, or diversionary tactics. And if you think about it, that is the only resource they have. They can’t tell you. So they have to resort to other things.
And I mean, I think of a couple of really poignant examples in Bodhi’s life was that one day he came home from school limping. And the bus driver said, “Oh the teacher said to tell you Bodhi’s been limping all afternoon. She had a look at his feet. She doesn’t know why. You better take him to the doctor.” So, of course, before I would run to the doctor– because taking Bodhi anywhere was difficult at that age, he would have been about seven– I had a look myself. So I took his elastic-sided boots off. Had a look at his feet. I couldn’t see anything. Had a look at the boots, looked inside the boots.
And there down stuck inside the boots was a pair of socks. So somebody had shoved someone else’s socks in the boots and then put Bodhi’s socks on. So the poor kid had been walking around all afternoon with boots that were too small because there’s a sock packed in. Now at that age he couldn’t tell us things hurt or were uncomfortable, and he didn’t even know that anything was wrong. He just limped all afternoon, and nobody could work it out. So you know, how do people like that express their needs without language? It’s really difficult, and they do resort to behaviour. And it’s really important that we help them out. And it’s really hard to help them out.

In Weeks 1 and 3, we discussed how ideas of what is “normal” can limit people with disabilities. Like other ideas about what is “normal”, ideas around normal behaviour are also socially constructed.

One easy way to recognise how our behaviours are “normalised” is to think about all of the things you do when you’re at home, relaxed and no one is watching, that you would not do in public — such as lying down horizontally.

In the above video, Shooshi discusses how challenging it was for her son Bodhi — and for her as a mother — when Bodhi would behave in certain ways. Sometimes, Bodhi’s behaviour was only challenging because it challenged social norms. In other words, it was of concern to others. But other times, Bodhi’s behaviour was his main form of communication. So for example, when things were difficult and frustrating for him, he would act in violent or aggressive ways to try to make his meaning understood.

Shooshi’s background is linguistics — the study of communication. With this in mind, Shooshi and her partner Mark spent a lot of time trying to understand and frame all Bodhi’s behaviour as communication. Shooshi realised that when Bodhi would act in ways that were viewed as challenging or disruptive, there were often very real reasons for this.

For example, Bodhi was in a computer class and was engaged in putting a CD in and out of the CD drive, until another student came and took the CD away from him. Bodhi became increasingly distressed after this injustice. He made loud and repeated sounds while standing behind the offending person’s chair and holding onto it, in an attempt to communicate his distress. The teacher, however, had not seen what had happened and got angry at Bodhi for the distraction he was causing.

Shooshi argues that another approach would have been to connect or bond with Bodhi over his communication — even if it was initially difficult to understand his meaning. So the teacher might have said, “Oh, Bodhi, you seem distressed. Something has upset you.”

In the video, Shooshi mentions a number of ways of managing behaviour. Firstly, she talks about behaviour support and behaviour analysis. Behaviour support can be provided by a specialist practitioner who investigates ways of supporting an individual, as well as their family and supporters, so that they are not at risk to themselves or others. There is no prescriptive way of doing behaviour support; instead, as we discussed in the last step, it is a person-centred approach that examines each person’s environment, relationships, service interactions and health and support needs. A behaviour support practitioner, having observed and analysed the person with behaviours of concern in their context, will provide a plan and ongoing support, training and adjustments to implement this plan. As Shooshi mentions, this is an ideal scenario and does not happen often — though when it does, it can have a life-changing impact.

Shooshi also mentions restrictive practices. Restrictive practices are any type of support or practice that limits the rights or freedom of movement of a person with disability. Restrictive practices include:

  • seclusion — isolating the person;
  • chemical — using medicine to control a person’s behaviour;
  • mechanical — using a device to restrain or make it harder for a person to physically move or control their behaviour;
  • physical — when support people use their hands or body to stop or lessen the person’s ability to move when they are upset or when a challenging behaviour is happening;
  • environmental — restricting what someone can access in their daily life;
  • psycho-social — when support people try to control what the person can do (often through punishment).
In Australia there are rules about the use of Restrictive Practices and there is also legislation that aims to eliminate Restrictive Practices. As it stands, Restrictive Practices can only be used in Australia:
  • when there is proof that everything else has been tried first;
  • when the behaviour might harm the person or others;
  • for the shortest time possible;
  • if the person has given permission to use the practice, or if approval has been given by the person’s guardian;
  • when service providers have thought about how it might affect the rights of the person;
  • if the practice is written in a Behaviour Support Plan;
  • if it is properly documented in writing and followed up regularly.

Talking points

  • Think of all the different ways you communicate that do not include speech.
  • Try to tell someone what you did last weekend without using language. How do you feel when you can’t say what you want to?
  • In what situations might someone want to use restrictive practices?
  • Have you been in any situations where restrictive practices were used? How did the person who was being restricted respond?
  • If you work with people with complex communication needs, how do they communicate? How do they tell people things? Ask for things? Communicate their feelings? Do they have communication resources that work for them?

In the next step we explore support around sex and intimacy.

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