Regulated Restrictive Practice

This session was part of the Advocacy Sector Conversations Forum series held on Zoom on 3 March 2021.


Overview

The NDIS Quality and Safeguards Commission released the Regulated Restrictive Practices Guide  in November 2020 that supports a contemporary positive behaviour support framework and explains what a restrictive practice is. It was developed for registered NDIS providers and NDIS behaviour support practitioners.

As a volunteer advocate, Julie Phillips has supported people with disability  with behaviours of concern over many years.  She brings her experience to explain what the regulations cover and highlight what advocates need to know in order to keep people with disability under a Positive Behaviour Support Plan free from abuse.

 

 

Links to resources mentioned in this presentation can be found at the bottom of this post.

 

Audio & transcript

 

Melissa Hale:
Good afternoon everyone. Welcome to the second session of the 2021 Advocacy Sector Conversations Forum. My name is Melissa Hale And I’m the coordinator of the Disability Advocacy Resource Unit.

Before I begin I would like to acknowledge the traditional owners of the land on which we meet and pay my respect to their Elders past, present and emerging.

Once again we are delivering the Advocacy Sector Conversations Forum to you online. We hope at some stage we will be able to deliver the series face‑to‑face when it’s safe to do so in an inclusive and accessible way.
However, we hope you’ve all settled in comfortably and are ready for our fantastic series this week.

We encourage your active participation today.
So please type your questions in the Q&A box and at the end of the session I will be facilitating a Q&A session with our presenters.

The second session for this series is around regulated restrictive practice.
The NDIS Quality and Safeguards Commission released the regulated restrictive practices guide in November 2020 that supports a contemporary positive behaviour support framework and explains what a restricted practice is.
It was developed for registered and NDIS providers and NDIS behaviour support practitioners.

As a volunteer advocate, Julie Phillips has defended people with disability who have suffered from restricted practice and brings her experience to clarify the regulation and explain what advocates need to know to help keep people with disabilities free from abuse.

To step us through this, please welcome Julie Phillips.

JULIE PHILLIPS:
Thanks, Melissa and hello everybody. I’m glad to be with you today.

You might be wondering why it would be that I am speaking to you about this topic, and as you can see and as Melissa said, I am a volunteer disability advocate and I’m also the manager of the Disability Discrimination Legal Services.

And I suppose, in terms of my manager position, obviously Disability Discrimination Legal Service, which I will shorten if I mention it again to DDLS, we deal with discrimination issues which can include people with disabilities who are complaining of some type of abuse. And as a volunteer advocate, as Melissa said, I’ve come across ‑ or been approached by many people, most of them children and, therefore, through their parents who have been subjected to restraint and seclusion.

I would say I’m an expert in knowing what I am not an expert in, and who the experts are. So that’s my expertise. I am not an expert in behavioural support but I know enough to talk about it to you and I know enough to know who is an expert, and I think that’s really important.

And so what I wanted to talk to you about today was this guide that’s been brought out. I’m not going to be able to give you all the answers about it, and I do hope that you will end up having more questions about the content and about this topic, because it’s a huge topic.

You might have noticed ‑ I think it was yesterday or the day before ‑ there was an article in The Age with Daniel Andrews reacting to the final report in relation to mental health, and promising that within 10 years, restraint and seclusion would be eliminated. One has to wonder why it’s going to take 10 years, but ‑ interestingly that’s only in the mental health sector.

I don’t know about you but I sometimes see people splitting off the mental health community with the disability community. It’s almost like sometimes there’s a view by some people that if you have a psychosocial disability, it’s not the same as whether you have autistic tendencies.

I don’t know why that is, but one of the problems with all of this sort of stuff is the fragmentation of approaches within a State, between States, and it’s not helpful, which is probably why we continue to be in a bit of a mess in relation to restraint and seclusion.

I want to quote some of the parts of the NDIS guide. in one way I hate using the terms restraint, seclusion and restrictive practices, because I find them quite euphemistic.

I think a good test for you is to imagine if something is being described as happening to a person with a disability, imagine what would happen if it was happening to you. What would you call it, would you call it seclusion or would you call it false imprisonment? Would you call it restraint or would you call it assault?

I think it’s really interesting how in the disability sector there’s a conscious and an unconscious attempt to always play down, what I will refer to as restrictive practices for the purpose of today, play down its effects, play down the importance of not using them. So we want to have a look into that as well today.

So I’m just going to read these out. I’m not sure if everyone who is linked up today can see my slides, but what is good about the guide is that it includes this: it includes the possible impacts of using restrictive practices on people with disabilities.

One is that the practices don’t address the underlying factors that cause the behaviours of concern, and let’s face it, restrictive practices are nearly always used in response to behaviours of concern.

So they say, for example, “people with disability who have limited communication skills and/or emotional regulation skills, may self‑harm in response to underlying factors such as confusion, anxiety, trauma, sensory impairments, or an underlying illness or pain”. And let’s face it, where most of us have probably been lucky enough not to be restrained before, but if you think it doesn’t hurt, you’re dreaming.

Next, “Controlling one behaviour using a restrictive practice can lead to other behaviours of concern. A restrictive practice may trigger a person with a history of trauma and abuse. A restrictive practice can cause trauma and psychological distress. The use of restrictive practice may result in a loss of dignity for the person with disability”.

I’m not quite sure why they use the term “may”. That seems pretty self‑evident. So it’s good that this list, ‑ and I probably haven’t replicated it in full, ‑ was in the guidelines because they’re certainly correct.

“A restrictive practice can limit personal freedom and the person’s ability to engage in activities of daily life. They can reduce meaningful interactions with carers and support staff”. and when you think about it, if the person who is looking after you has thrown you to the ground and sat on you, you’re never going to have the same relationship with that person again.

Lastly, in my list, anyway, “Long‑term use of restrictive practices may lead to an over reliance on those practices which could result in the person seeking restraint or becoming anxious without the restraint”. In other words, if you get in the habit of being restrained constantly, it might be ‑ it might end up being something reassuring to you, and, therefore, you might seek it out.

And what I’ve added at the bottom of this list, although it does come up later in the guide, is ‘injury and death’.

Interestingly, because I don’t think I’ve replicated it in my PowerPoint presentation, when you have a look at all of the different types of restraint that are prohibited, there’s not much left.

I’m not complaining about that. What I’m suggesting is that most of the people who subject others to restraint, are not trained in restraint, and, therefore, just do ‑ (I was going to say the best they can which is kind of ironic but the worst they can), and they try and tackle someone whichever way they can.

And if you look at this list and see what’s not allowed, you wonder there’s not much left except perhaps holding someone’s arm. Any of you that have had experiences of people who have been restrained, know that that is very rare. It’s usually all the practices that are in this guide as being prohibited, that in fact are used.

So you might ask why the NDIS is putting out this guide on restrictive practices. Are they experts? I’m sure you can guess the answer to that. Due to some of the data we see about the Safeguard and Quality Commission and what is befalling people with disabilities, how often they’re being restrained. The answer is no, they are not experts.

Secondly, an interesting question is, do they require expertise for those assisting people with behaviours of concern?? I’m going to address this a little bit more later on, but in my opinion the answer is no.

Thirdly, does a person have to have a particular qualification to become a registered behaviour support practitioner with the NDIS? And this is a really contentious question in my mind. Because the answer to that is no as well. it’s not difficult to become registered with the NDIS.

Somebody recently alerted me to the fact that they’re changing the current procedure for registration to a self‑assessment, which is a pretty bad idea, in my opinion. When you think about the ethics of being a behaviour support practitioner, which is just the phrase used by the NDIS so I will continue to use it for the purpose of today. Ethically it’s a minefield. Because you wouldn’t, in medicine, allow people who are under‑qualified or unqualified to practise on people who are sick. That would be seen as sometimes illegal, definitely unethical, and apart from that it probably wouldn’t work and, indeed, could do great harm.

In terms of general behaviour support practitioners for people with behaviours of concern, I have looked at all sorts of people who are doing functional behaviour assessments, who are giving advice on behaviours of concern, who are writing behaviour plans. As you know, NDIS ‑ funding is used in schools. It’s not meant to be, but we all know that it is because the department of education under‑fund support for kids with disability so lots of schools attempt to get NDIS into their schools so they can save money.

So when we talk about restrictive practices generally, we’re talking about children, we’re talking about adults. If you don’t know what you’re doing and you put yourself forward as doing that, and you are not effective, it means that often people are getting hurt. It’s not only the person with a disability who displays the behaviours of concern that gets hurt, because many of those behaviours can be self‑injurious behaviours.

So a person with a disability might, when they get distressed, smack their head into a window or a wall. Behaviours of concern can hurt other people, which is pretty obvious. And so should almost anyone ‑ and I’m going to suggest that almost anyone does ‑ be involved in writing up behaviour plans and dealing with behaviours of concern.

In my opinion, it’s unethical and it’s happening all the time and it continues to happen under the NDIS.

So according to the NDIS, the purpose of the guide is to “promote the rights and inherent dignity of people with disability”. Great.

“Assist in identifying each regulated restrictive practices”. All good.

‘Provide practice advice consistent with a positive behaviour support framework, contemporary evidence‑informed practice intended to reduce and eliminate the use of restrictive practices”. And we’ll just stop at that sentence for a moment.

A lot of people bandy around the term positive behaviour support which has become a very fluffy term which seems to cover almost everything generally in an umbrella way, talks about trying to address behaviours of concern in a positive way. But, if you look at formal positive behaviour support, it’s actually much more than that.

I also see the terms ‘evidence‑based’ and ‘evidence‑informed’ flung around constantly, and, really, what is it meant to mean? It’s meant to mean evidence‑based usually means that there’s a scientific basis for what is occurring. And usually the people that use those terms are not referring to that.

And then we talk about the intention to, “reduce and eliminate the use of restrictive practices”. I also find that to be a motherhood statement that has been bandied around for years without coming to fruition. So why is that? I will leave that hanging for a moment.

And the last purpose is “to assist registered NDIS providers and behaviour support practitioners to meet their obligations under the, the relevant Act and Rules”.

So the restrictive practices that are covered are chemical restraint, environmental restraint, physical restraint, mechanical restraint and seclusion. And you can read the definitions of those. I don’t have a problem, really, with those definitions; I think they’re probably covered correctly.

And then we’re talking about the ‑ well, the Act that governs the NDIS. The guide mentions that the NDIS Act gives effect to Australia’s obligations under the Convention on the Rights of People With Disabilities. To shorten that CRPD. But this is where it gets murky and I don’t really want to contain today’s discussion just to the NDIS, because there are other laws that apply to restrictive practices.

I’ve left one off so I will add it now. But two of those laws are discrimination laws, And so the Disability Discrimination Act which is a law that applies to the whole of Australia. And the Equal Opportunity Act which is Victoria’s State law. In each State in Australia there’s a similar Act that allows people who live in a particular State to go to a tribunal and allege a breach of that law.

Why it can sometimes be discrimination is because it can segue into a failure to assist a person or provide them the ‘reasonable adjustments’ that they might need to prevent the behaviours of concern.

The study of behaviour is an actual science, and there’s decades of research on behaviour analysis and the science of behaviours. What we know, amongst a whole lot of other things, is that often behaviours are environmental. So sometimes what’s happened, and happening, to a person with a disability is that their environments and treatment are actually causing the behaviours of concern. Therefore, that’s when ‘reasonable adjustments’ might come in.

‘Reasonable adjustments’, if you’re not familiar with that term, which is a typical term in discrimination law, it just means supports, really, the supports they need.

So the Crimes Act may also apply. In other words, there’s a very fine line, as I mentioned before, between some types of restraint and assault. And also the convention against torture, inhumane and degrading treatment had something to say on the restraint and seclusion of people with disabilities.

I did miss one off my list. Concentrating on Victoria again, which is the Disability Act which also has a number of its own regulations.

So as you can see it’s a real hotchpotch of different laws and regulations and how you work out which one to take notice of, it’s really quite ifficult. Are any of them, in my view ‑ do any of them address, putting the conventions aside, do any of these Acts competently address the problem of restrictive practices against people with disabilities? Not in my view.

So, again, the NDIS sets out what it thinks about restrictive practices and it says correctly that these practices can present serious human rights breaches. Although interestingly when these things happen you will never hear this terminology used by anyone.

“The decision to use a restrictive practice needs careful clinical and ethical consideration, taking into account a person’s human rights and the right to self‑determination”. Now, I don’t know about you, but I have, in all the examples of restraint and seclusion of people with disabilities that I have seen, I have never seen, any documentation that reflects any of the type of consideration that I’ve just mentioned. A person’s human rights and self‑determination are usually not discussed either before or after.

“Restrictive practices should be used within a positive behaviour support framework that includes proactive, person‑centred and evidence‑informed interventions”. There are some circumstances where restrictive practices are necessary as a last resort to protect a person with disability and/or others from harm.

I’ve put ‘last resort’ in capitals because it,, again,, is something that is bandied around, with, it seems to me, no one having the vaguest clue, what it actually means. And I think with all the instances of restrictive practices that I have seen, that on every single occasion the person who committed the restrictive practice, will always say, “”It was a last resort”.”.

And that even covers when, for example, a child might be in a classroom throwing things, or hiding under a desk. The staff member might say, “Well, they could have tipped the desk over which would have hurt people and so we had to do blah, blah, blah”.” So I think we should talk about ,‑ and I will give you two examples where we will go into this a bit more, ‑ last resort in more detail.

As advocates we really have to know more about all this stuff,, then all the service providing people that are working with our clients. Because somebody needs to make sure that the restraint and seclusion of people with disabilities starts reducing. And I don’t see any evidence that it is.

So the NDIS asks itself, when can a restrictive practice be used and how do these requirements, sorry, they ask when a restrictive practice can be used. And I ask, how do these requirements, that the NDIS mentions, help people with disabilities? Are they evidence‑based or subjective? And I’ve just picked a few out of the guideline.

So it says that “the restrictive practice needs to be clearly identified in the behaviour support plan”. Well, I don’t see that really as helping the person with a disability.

“If the State or Territory in which the regulated restrictive practice is to be used has an authorisation process in relation to that practice, then the restrictive practice must be authorised in accordance with that process”. So, again, we’ve got a lot of processes all over Australia, within States, that are all slightly different. And what they’re saying is if you want to restrain someone you’ve got to follow that process, even if there’s a number of them and, you know, they’re not the same.

So I don’t see how that helps a person with a disability.

And, again, “be used only as a last resort in response to risk of harm to the person with disability or others, and after the provider has explored and applied evidence‑based person‑centred and proactive strategies”. Now, there’s no explanation of what evidence‑based strategies are, or an evidence‑based approach to behaviours of concern is.

And there’s no explanation as to, in terms of risk of harm,, well, how much should the risk be? If you’re going to restrain a person with a disability because they looked like they were going to do something, does that meet the test? If a young autistic student is throwing a ruler around which might hit someone in the face, is that a sufficient risk of harm to throw them on the ground?

So what you’ve got here is a lot of subjective stuff which each individual uses their own opinion, experience, to decide on the definition.

Person‑centred, yes, yes, and proactive strategies ‑ what are those proactive strategies? Those evidence‑based proactive strategies which should have been, which must have been,, in my opinion, applied?

I can understand why for an unplanned emergency ‑ and this is something that in the old Disability Act was in a guideline by the senior practitioner, if you have an unplanned emergency with a person with a disability, , much to your surprise, the person with the disability suddenly either goes to run in front of a truck or picks up an implement and tries to stab someone. Then obviously that’s a situation where you might have to react to protect that person, to protect others.

But after that happens you’re on notice. You know that the person that you’re working with, or providing services to, has behaviours of concern that are severe enough that restrictive practices might need to be implemented.

Now, as soon as you know that, then it’s your obligation ‑ not you as an advocate, but the service provider ‑ whoever is working with the person with a disability ‑ it’s their obligation to immediately find out, well, what are evidence‑based behavioural approaches and, bang, bang, bang, we better get this stuff in place immediately. We don’t want to use restraint and seclusion as just the back‑up to just keep responding to the behaviours of concern.

So unless that behaviour of concern that you’ve just found out about continues happening in the next day, when, of course, you haven’t had time to organise the things you need to,, well, then, it’s unplanned emergency and, yes, you might have to use restrictive practices.

But what we see is restrictive practices being applied to people with disabilities month after month and year after year and that is not a last resort. It’s not at all a last resort. But it’s easy, and it’s cheap, and, therefore, a lot of child services,, schools and adult services, tend to use restrictive practices.

And every time they will say, “Well, there was a risk of harm, we’ve done all these things, put together a support plan written by a incompetent martial arts expert and it didn’t work”, now you might have a bit of a giggle about that but I can assure you that martial arts experts have been used recently to write behaviour support plans and assist people with disabilities assist in quotation marks, with behaviours of concern.

So you have the uninformed person saying, “Well, we did all this stuff but he’s still got behaviours of concern”, as if somehow it’s the person with disability’s fault. It’s a little like a person with cancer being told to go see someone who says that if you just exercise your cancer will go away. And then someone saying, well, I did ‑ you know, I got help and it didn’t work! This is why it’s vital ‑ which we will talk about soon ‑ is to talk about the quality of all of these behaviour supports and the people.

So we, again, say that “the restrictive practice should be the least restrictive as possible in the circumstances, to ensure the safety of the person or others”. I mean, how do you even decide what that means, when you’re dealing with situations that occur on the spot and you’re going to suggest that it’s an emergency situation.

Particularly if you’re not trained in restraint., There’s a bit of talk about training in this NDIS guide but it actually seems to me to be about training in what’s in the NDIS guide. But if you are going to use restrictive practices, if it really is a last resort, then you ought to be trained.

I don’t know about you, but if I had to ‑ was expected to all of a sudden restrain someone in the next five minutes, I wouldn’t have the vaguest clue. It would probably all be instinct and it would probably be very harmful for both of us.

There are different courses, and only a few of them, that, are what I would call, credible. There’s a lot of people making a lot of money out of this sort of thing these days, and out of the NDIS in general. That’s why you often have a lot of inappropriate people claiming to do a lot of things, which need scrutiny.

“The restrictive practice should be in proportion to the potential negative consequence or risk of harm”, again, pretty fluffy, “and be used for the shortest possible time to ensure the safety of the person”, again, subjective.

Now, the guide lists some key points and general considerations about restrictive practices. , I’ve only listed some, the ones that I thought were important.

One is functional behaviour assessment. Vital. The next is behaviour support plan; communicate appropriately with the person; and staff training. So I will just go into each of those.

So a functional behaviour assessment is absolutely vital.
Who can do one of these? Well, according to the NDIS their registered Behaviour Support Practitioner can.

Who are they? They can be all sorts of people, who can make a case for themselves to the NDIS ‑ (this is before they shortly start self‑assessing themselves), ‑ that they ought to be registered.
They don’t have to prove that they have had experience and, more important than experience, outcomes in this area.

In other words, if someone who didn’t have a recognised credential wanted to prove to me that they should be a registered Behaviour Support Practitioner in charge of a person with a disability’s behaviours, I would want to know that they have got a history of working with people with moderate to severe behaviours of concern, and a history of actually effectively mitigating those behaviours. It wouldn’t be me ‑ being placated by them saying, “Yes, I do”, it would be evidence. The NDIS do not require that.

What does the research say? The research, of which there is a lot, really has board certified behaviour analysts as the people at the top of the tree here. Those people are people who have done a masters of applied behaviour analysis, who have spent years practising, being supervised, having to prove themselves practically, having to study ethics and pass that module, and it is really very strict.

So those are the only people I trust. But there’s no requirement by the NDIS for anyone, as I said, to have any type of qualification.

What is a functional behaviour assessment? Let me just remind myself whether I’ve gone into that on the next slide ‑ no, I haven’t ‑ that’s okay…

A functional behaviour assessment is an assessment which determines the functions of a person’s behaviour. This is different from triggers.

You might see the word ‘triggers’ a lot when you’re dealing with people with disabilities who exhibit behaviours of concern. In other words, what triggers somebody, what’s happened just before the behaviour of concern.

The function of the behaviour is different. The function of the behaviour is what does the person get out of behaving in that way? What function does the behaviour serve for the person with a disability?

Now, sometimes this could be easy, and something that we, as people who don’t have training in behaviours of concern, could work out because it’s so obvious.

For example, let’s pretend you’ve got a boy with a learning disability in school who is three years behind his peers, who has no self‑esteem because he hasn’t been provided the assistance he needs to learn. And every time there’s a subject in the class where the teacher just calls out to people and makes them stand up and answer the question, every time that subject comes up and that teacher starts this process, the young man starts throwing chairs, and he is ordered from the room.

So the function of that behaviour would be to get out of that classroom because he’s embarrassed about the fact that he’s going to be humiliated in front of his class mates. He’s going to be asked questions that he doesn’t know the answers to. The young man may not be able to articulate that that’s the function of his behaviour. But it’s something that somebody should be able to work out if they know his circumstances, and they do a bit of digging into his circumstances.

So, again, that could be an easy, ‑ well, it’s not that easy, but it could be a simple explanation, but it is a good explanation as to how one determines the function of the behaviour and the importance of that, ‑ the determination of that function in writing your behaviour plan, Because if you don’t know why someone is behaving the way they do, how are you going to write a good behaviour planfor that person? An effective behaviour plan?

Now, I’ve given you an example of someone who might have, you know, mild disabilities, learning disorders, but nevertheless feels the need to have a behaviour of concern because of their circumstances. When you’re dealing with profoundly disabled kids or adults ‑ who might have multiple disabilities, who can’t speak to you, who have not been given a fair communication method, there might be multiple functions of the behaviour and it might be a lot more difficult to work out.

So someone like me, and I’m suggesting someone like all of us here, are not going to have the credentials and the expertise at working out what that is. And we shouldn’t even try. just like we shouldn’t try and take out somebody’s gallbladder.

So the functional behaviour assessment should be a mandatory part of addressing someone’s behaviours (I’m saying this now) ‑ and, as I said, it is in the NDIS guide, but it should be done by someone who has got the credentials to do so. Because otherwise you’re going to muck it up and we get into the ethical problems that I was talking about before, of when you are not competent, and your lack of competence is not fixing the problem.

Behaviour support plan ‑ I don’t know about any of you ‑ I’ve probably seen 300 in the last five to 10 years for adults and kids, and they are of varying quality because there’s no standard. Sometimes in some areas there’s a template, but it’s a very bad template because people who have designed the template don’t know what they’re doing.

Some practitioners think the longer a behaviour support plan is, the better it is, not necessarily. It’s got to be well understood by everyone who is working with the person who demonstrates behaviours of concern. Everyone must be trained in it, everyone must understand it, and that’s not always the case.

Are the persons who are employed to deal with these behaviours of concern, which includes carers, teachers and aides, When you’ve got your expert coming in they’ve got to train all these people who are working with the person with a disability on a daily basis, ‑ is behavioural data being taken? Is that data consistent? And have people been trained in taking the behavioural data? Who’s analysing the behavioural data? Because if you’re not analysing it, why are you taking it? If you’re not taking behavioural data, how are you sure that the behaviour plan is effective? Are you just guessing?

I would not ever write a behaviour support plan because I know that I don’t have the skills to do so. Gee, I’m just looking at the time so I’m going to have to speed up.

Communicating appropriately. We all know the research says that behaviours of concern and, the inability to communicate, are closely linked. And why wouldn’t they be.

Does the person use Auslan and are they getting Auslan? Do they use augmented and alternative communication? What if the person can’t functionally communicate? Surely that’s got to be your priority – intensive assistance.

So that’s what the NDIS says. Staff need to be appropriately trained in how, and when they can use regulated restrictive practices safely in the behaviour support plan. But you have to be very careful who is trained restraint.

It mentions the national framework for reducing and eliminating the use of restrictive practices. That’s another document that, to my mind, has not achieved its goal. I haven’t seen any data on the outcomes of that, and, once again, reducing and eliminating the use of restrictive practices, is bandied around but never achieved.

Why? Because we’ve got low expectations.
We’ve got low expectations of the quality of persons expected to address behaviours of concern, and of the behaviour support plans.
I will give you two examples, (and I apologise to the interpreter for speeding up) these are real life examples.

A very well known autistic centre restrained my client and subjected him to seclusion over and over and over and over again. And each time they said it was a last resort and they had no other option.
They did not do a functional behaviour assessment. There was no behavioural data. There was no formal review of the behaviour plan at any time. Holds were used which are prohibited, and the persons involved were registered behaviour support practitioners with the NDIS.

Example 2: a psychologist, who works for a psychology firm that I had a lot of respect for, one of my clients spent $20,000 through the NDIS on this person, who after four months, came up with a functional behaviour assessment (which is about 50 pages), had so many functions of the behaviour that it was impossible to determine which one to address, and never wrote a behaviour support plan.

So this is all stuff that’s happening under the NDIS. What can you do? As I said, advocates have a vital role.

What do the risk factors tell us about restrictive practices? These are in the NDIS guide and they’re worth reading, high rate of restrictive practices against autistic individuals, people who can’t communicate which starts at school.

And that’s why advocating for kids in school who can’t communicate is absolutely vital, because once you’ve left school, you know, you’re almost done for then, you’ve established 12 years of behaviours of concern that nobody has fixed. And, of course, behaviours of concern, that’s when people use restrictive practices. So the competence that is applied to people with disabilities who demonstrate behaviours of concern is vital.

You go see a specialist when you’ve got something that you’ve seen the GP for and they can’t fix, you go up the chain.
The approach to medical and illness should be exactly the same in terms of competence, in terms of people with disabilities. If something hasn’t worked, if you see no change within six weeks to a person’s behaviours of concern, you go somewhere else, you get someone more qualified.

So what preventative work can you do? You can ensure that your clients have a functional communication method. Something where they can communicate functionally to tell people what’s going on. Are they feeling pain? What do they want? What don’t they want? What are their wishes and what are their desires?

You’ve got to have the earliest intervention possible for behaviours of concern by qualified people, and I’ve named a board‑certified behaviour analyst there. And just like any early intervention, the more entrenched behaviours of concern are, the harder they are to address. A lot of people with disabilities are having these behaviours for years because people around them are not competent.

Lastly, don’t let cow boys work with people with disabilities. Assist families, or the person with a disability, to choose very carefully about who is going to get involved and meddle with their behaviours of concern.

How will we know if it’s working? You look at the outcomes. One of my favourite terms is, “the plural of anecdote is not data”. So you don’t listen to someone spout off about how great they are of this, you want evidence, you want data, you want real hard facts. And people with disabilities, that is what they deserve.

And I have ‑ thanks to speeding up (and apologies to the interpreter again) I’ve managed to finish at 1.50 pm. So I think Melissa is going to come back. Here she is for questions.

MELISSA HALE:
Right on time, well done. Thank you very much Julie, that was really useful.

And when it comes to restrictive practice it’s a bit of an elephant in the room. It’s a really uncomfortable topic that many people don’t like to bring to light because it’s a hard thing to understand and get right. So I commend you for taking this on and acknowledge the incredible work with families of people with disability that this must have taken you as an advocate in the field. Thank you for taking the time and sharing your expertise with us all.

I think before we go to question the first thing I would like to highlight is the recording of this session and the slides associated with it, will be available on the DARU website as usual.

We will go to questions and answers now, so if you’ve got a question you would like to ask please type it in the Q&A box on your screen and I’ll pop it up on the screen. The first one is:

QUESTION:
What does a good outcome look like and can behaviours of concern be modified and improved?

JULIEPHILLIPS:
They definitely can be mitigated and eliminated. Now, when I say that, that’s what the research says and it’s directly attributable to the skills of the person working with them.

So a good outcome looks like, you might start taking baseline data which is a person with a disability exhibits a behaviour of concern 10 times a day. And, therefore, what your goal would be, ‑ short‑term goal, might be down to five times a day. Long‑term goal might be absolutely gone.

Now, the research does not say that, you know, that can be promised for every single person, because there might be people with such complex physical, psychosocial and other disabilities that to never expect a behaviour of concern from them again is unrealistic. However, the research does say that there’s no reason that most behaviours of concern definitely can be modified and mitigated, but oftentimes eliminated.

So that’s what you should expect and that’s what good outcomes look like.

MELISSA HALE:
Great. Thank you Julie. We’ve got some questions coming in.
Next one ‑ big picture one.

QUESTION:
if you could change three things about how Australia addresses behaviours of concerns, what would they be?

JULIE PHILLIPS:
The first thing would be that I would nominate a minimum qualification for persons that can experiment, and I call it experiment, on persons with disabilities that have behaviours of concern. That occurs in other countries.

The NDIS certainly doesn’t have it right, as my two stories indicated. So I would say that, for example, moderate to severe behaviours of concern, the minimum qualification should be a board certified behaviour analyst. And we are lucky enough now to have those courses in Griffith university in Queensland and Monash in Victoria.

Secondly, I would make, I would change some laws around these things and try and get some harmonisation of laws. Because you can’t have all these different laws and all these different regulations, which we have, all saying slightly different things. It’s a total mess.

And I suppose thirdly that I would also ensure that a law existed, which it doesn’t, to protect children from restrictive practices. As Melissa knows, that is a pet area for me because that’s where it all starts. You know, you’ve got to nip it in the bud, and there aren’t any laws that actually ‑ you know, we have the Disability Act for adults in Victoria, We don’t have an equivalent for children. And so that’s another thing that I would change.

And when I make these comments about Victoria, which, of course, I’m more familiar with, I would suggest that that is emulated across Australia. You shouldn’t get a different law and different protections just because you move from South Australia to New South Wales.

MELISSA HALE:
Absolutely, and accountability would be a good thing as well, consequences too.

question is a long one so I’m going to read them from a different screen in case they don’t come up on the screen in front of you.

QUESTION:
We have heard from our members that the NDIS spend a lot of money developing the behaviour support plans but don’t implement them.
The person who develops the plan leaves and nobody assists the families who use the plan and they are left to their own devices with no understanding of it. How can we stop this happening when families don’t understand the process?

JULIE PHILLIPS:
Yeah, and that’s a good question. And this is the problem.

The NDIS is not good at this, and that’s what happens when you allow almost anybody, which is a slight exaggeration, to be a behaviour support practitioner.

As I said before, if that practitioner is not training everyone who works or cares for the person with a disability in that plan then they don’t know what they’re doing. And if they don’t train you in data collection, and there’s not some process by which the data should be analysed, they don’t know what they’re doing,

I’m big on using legal mechanisms, ‑ it’s just a shame there aren’t any, ‑ but why should people with disabilities be experimented on by people who don’t know what they’re doing?

I think we need to complain a bit more, to the NDIS. Why are you… here is the outcome for this person with a disability, why have you registered them as a behaviour support practitioner? Or perhaps make a complaint to ‑ if a person’s a social worker, their professional body or psychologist, to their professional body. It’s recklessness and negligence in my opinion.

So we need to stand up, even when it’s difficult, and complain about these people.

MELISSA HALE:
It’s really concerning.

The next one:

QUESTION:
hi Julie, you highlighted talking to families/participants about choice of service providers, as you highlight a market that has varying quality of experienced providers. Are there any good ones that you would please recommend or suggest shortlisting?

JULIE PHILLIPS:
Um…

MELISSA HALE:
Would you like me to repeat that?

JULIE PHILLIPS:
No,I’m just trying to think of what the answer would be.

Look, in terms of behaviours of concern, I don’t know if this is your question because service provider you could just mean something general, but if I interpret your question correctly, Irabina Autism Services would be one of my top places to go for behaviours of concern for children and young people, teenagers as well. I’m not quite sure what their limit is.

Any of the organisations which employ board‑certified behaviour analysts – that would be my second recommendation.

MELISSA HALE:
Thanks for that, Julie. And the last one…

QUESTION:
What alternatives to restrictive practices could be used to prevent or address behaviours of concern if there is any?

JULIE PHILLIPS:
Yeah, sure. Well, that’s the million dollar question.

Firstly, if the behaviours are already there, if you get your functional behaviour assessment and your competent behaviour support plan, they should be fixing things for you.

The other thing is, and I apologise that I’m talking about people with disabilities in the third person as if they’re, you know, a problem, but we are talking ‑ you know, we are talking about behaviours of concern, the most important thing is communication.

So if you or I had our mouths taped over and our hands tied and we couldn’t communicate at all, we would be developing behaviours of concern within 24 hours. So that’s something else. Someone has to be able to functionally communicate. I mean, what if you’re in pain, for example? What if you’re behaving in a certain way because you’re in pain and you can’t communicate that to anyone?

So the board‑certified behaviour analysts who write the behaviour support plan, all of the strategies that they put in place would address behaviours of concern.

And then there’s some very general things in terms of the prevention of behaviours of concern, dignified, respectful treatment. Treating people not as animals, which they continue to get treated like on occasion, ensuring that their rights are all met.

Responding to them in a positive way, not using punishment, and the more you restrain someone or use a restrictive practice, the worse usually the behaviours of concern get.

So we have to come in as early as possible, get the highest qualified people we can, and ensure that many of those practical things, such as communication, are addressed as soon as possible, and intensively.

MELISSA HALE:
It’s also about, you know, getting to know the person as a person and understanding how they communicate and engaging with them on that level as well, to just understand them as people.

JULIE PHILLIPS:
Yeah, and America is way ahead of us, really, because they often talk about being of service to people with disabilities.
In other words, the whole thing with some of their service providers ‑ not all of them ‑ is around the other way.

Some of the organisations I’ve dealt with have viewed their assistance to people with disabilities, as an honour to serve that person with a disability. And that person with a disability has rights, has decisions, has choices. And I don’t think, generally speaking, we have that view in Australia.

It’s like, we’ve got a job and they’ve got to fit in with us, and if it’s convenient for us, for everybody to eat dinner at 5 o’clock so we can do the dishes,, that’s what we’ll do.

So it’s a topsy turvy sort of view of really showing respect and dignity of the person with a disability, rather than you’re in control of everything about their life.

MELISSA HALE:
Agreed.

Well, thank you very much, Julie, for your time to bring this presentation to us all today. It’s a very important topic and I’m really glad that we’re talking about it, so thank you very much.

JULIE PHILLIPS:
Thanks, Melissa.

Thank you to the interpreters.

MELISSA HALE:
Well, thank you, everybody. Thank you to the Auslan interpreters and captioner for your hard work today. Thank you to Show Division for bringing this production to you today.

Have a wonderful week, everybody, and we will see you next time.

insert transcript

 

Download slideshowregulated restrictive Practice guide (off-site)National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector (off-site)NDIS information on restrictive practice (off-site)
Author:
DARU

Date published:
Wed 3rd Mar, 2021