Interviewer

Welcome to another episode in our series on intellectual disability health.

We're here with Doctor Julian Trofimovs to talk about his recently completed PhD research about people with intellectual disability and the justice system.

Before we go any further, I think we should offer our congratulations to Julian for receiving the UNSW Dean's Award for an outstanding PhD thesis. That's an incredible achievement. Congratulations, Julian.

Julian

Thank you. It was a lot of work. And it's kind of nice that it was, recognised. I wasn't expecting it,

Interviewer

Can you give us a brief overview of what your research was about?

Julian

I can try, I have a lot of work. I found even my PhD title. This is a mouthful. Yeah. It was looking at intellectual disability or people with intellectual disability, and the overrepresentation in prisons. And whether we were recognising these individuals as having an intellectual disability in prison and whether this group were actually then getting connected to services, leaving prison. And if they were getting connected, was that helping them stay out of prison?

Interviewer

Could you give us an idea about how many people with intellectual disability are in our prisons?

Julian

There's been a lot of research that sort of indicates that there's an overrepresentation. But there's a lot of debate around how big that number is. and that comes down to issues of identifying people with intellectual disability. So, for example, in the general population is about 1 to 2 percent of the population of an intellectual disability in the prison system.

Studies have shown that it can be the same, 1 or 2 percent. It can be all the way up to 40 percent of the prison population have an intellectual disability. And then all comes down to how you sort of measure and identify someone has an intellectual disability in prison.

And what we found was that, in our study, it was about 4.3 percent of people, on a given day in, in prison in New South Wales had an intellectual disability, which is considerably more than the 1 or 2 percent that's in the general population.

So that overrepresented in the prison population.

Interviewer

So the rates of people with intellectual disability in prisons is about 2 to 4 times the general population, even if we're looking at it really conservatively.

Julian

Yeah.

Interviewer

I know your research didn't necessarily focus on this, but do you have an understanding for why the rates are so high?

Julian

There's lots of different theories behind it, but my thesis was really looking at the, the lack of support services.

I mean, intellectual disability in itself doesn't mean that someone is more prone to crime or more likely to go to prison. It's situated in a context of socioeconomic issues. We're all complex and we all have, issues that, cannot be easily, separated from one another. And when you're talking about this group that there are highly complex group. It's not just an intellectual disability, it's also the mental health issues. It's the substance abuse issues. It's homelessness. It's, you know, it's, childhood trauma. And you can't sort of address these things independently or in a siloed fashion. You really because they interact with each other.

So it's not that intellectual disability sort of is the only risk factor or somehow sits alone. But it sits in this kind of complex problem that puts a lot of people at risk.

Interviewer

Absolutely. And I guess people with intellectual disability are much more likely to be victims of crime rather than to be offenders as well.

Julian

Yeah. That's right. There's a few studies looking at this, that people with intellectual disabilities have a very high rate of being victimized as well as being offenders. So it's a very complex problem.

Interviewer

In terms of this wide variation in rates of people with intellectual disability in prisons and the difficulties with identification. Do you think we're missing a lot of people with intellectual disability?

Julian

Yeah, absolutely. I think there's a lot of people who sit in the borderline zones, of the intellectual disability diagnosis. So if an intellectual disability diagnosis is said at an IQ of 70 or below, there are people who sit in this kind of liminal, liminal zone – around 70 to 80 to 90 – who are just as equally disadvantaged to who are just as equally in need of support, but they're not necessarily receiving a diagnosis that would make them eligible to get disability support services.

And this group is the one that's quite often, re-offending and going back to prison because of those reasons of not having access to support.

Interviewer

So let's turn now to another of your key findings. Your research also looked at what happens to people with intellectual disability after they leave the criminal justice system. And you focused on this concept of recidivism. Can you describe what recidivism is for people who may not be familiar with the term?

Julian

So it depends on the study, but it normally indicates that someone who is reoffending or returning to custody. In our studies, we were looking at people who'd left prison and then returned to prison.

Interviewer

Did you find that there was anything that could help break the cycle and reduce the rates of people returning to prison?

Julian

Yeah. For my study, we were looking specifically at sort of provision of support services. So people with intellectual disability, it's been shown, have a higher rate of returning to prison than the general prisoner population.

So what we were interested in was whether, if this group were provided the support when they left prison, whether that would have an impact on whether they return to prison or how long they stayed in the community.

And we found that actually, the provision of disability support after a prison episode had quite a remarkable effect. It lowered the recidivism rate or the proportion of people to return to prison, down to about the same proportion as the general population.

So it was quite a marked result.

Interviewer

Wow. That's incredible. And that was just getting some sort of disability support in place when they were leaving.

Julian

Yeah. It was very broad because of the nature of the disability data that we have, we couldn't look at specific support services. So it was just looking generally at any sort of support.

So I mean I would theorize that if you actually had more information about the different levels of support, intensity of support, how long people continued with that support, I think you'd find that you would be able to unpack that quite a bit more.

Interviewer

And in terms of if they didn't receive the disability support, what were the rates of returning to prison without that support in in place?

Julian

It was very high. It was like, I mean 70, 75 percent. So it's quite it's quite a remarkable proportion of this group that will end up returning to prison. I think the general recidivism rate is around 50 percent. So it's quite higher than the general prison population.

Interviewer

So three quarters of people almost were returning to prison without the supports.

Julian

Yeah. That's right. It's quite shocking when you hear it.

Interviewer

Your study also looked at the intersection between mental health and intellectual disability. Can you tell us a bit more about that as well?

Julian

Yeah. So we also looked at a group that had intellectual disability and a serious mental illness. And by serious, I mean schizophrenia, psychosis, these, these sorts of diagnoses and whether, if this group was connected to community mental health support after release, if that played a role in keeping them in the community.

And, similar to the disability support, we found that it did have an effect on the rates of return to prison.

And for those that received both disability support and community mental health, they stayed in the community longer or didn't return to prison at all.

We actually looked at a subsample. So a smaller group who received, a particular form of disability support, it's called the Community Justice Program, and that's a program that's set up for people who had been identified as being at very high risk of offending.

And they put, in touch with these, support providers.

Interviewer

So how does that program work?

Julian

Well, you've got for each individual a case manager. And so what that individual does is then connects them to support services.

So not just disability support, but will help to connect them to mental health support or substance abuse programs. So it'll help connect them to housing. It'll help connect them to Centrelink. So it's this one-on-one relationship that they have with the individual that you don't get if you're just dealing with one support organization or one mental health organization separately.

And that's where the importance of these sorts of programs are.

Interviewer

How widespread is that?

Julian

It's a very small program. I think they have capacity for 20 or so people. So it's

very limited. I mean, it's very intensive and probably quite a costly program to run, but this is a group that is going to cycle through prison continuously unless you really provide the support that they need to address the kind of complex circumstances that they're in.

And we found that this program helped to reduce the recidivism for this group substantially enough to really warrant looking into whether it should be expanded. There've been a number of studies that have looked at the costings of these programs. And there's an argument to be made that the cost of support is considerably less than the cost of imprisonment.

Interviewer

And at the moment, are there barriers to people accessing the services that you're, speaking about?

Julian

Yeah, there certainly are. One of the biggest barriers we found was really identifying people.

So identifying intellectual disability is very difficult. And we if you're not identified with, then you can't be connected to support.

Interviewer

It sounds like that identification is a really important barrier. And once people are identified as having an intellectual disability, do they then go on to receive the supports that are required?

Julian

Not always. So, in the prison system in New South Wales, you've got a fantastic, disability support organization, the statewide, disability support group, and they do a lot of work connecting people with intellectual disability to support services.

But as is the case in a lot of, scenarios, they probably don't have enough funding or resources. So it's not always, I think, as easy as it should be. that's also funding disability support providers. I mean, with the NDIS, it's a totally different landscape that seems to be constantly changing as well.

And it seems like for people in the prison system that they've forgotten about, I think a lot in this debate as well. leave.

Interviewer

I guess historically, the disability support services were provided by state services. and since the NDIS, it's been a more privatized system. Has that impacted the access to disability supports for people coming out of prison?

Julian

Yeah, it seems to have had a bit of a negative impact from what I've read. Because it's quite a recent transition, hasn't been any really big quantitative studies into support access.

And in fact, my thesis, one of the reasons I, I did it was because there was a real lack of studies generally of disability support access for prisoners with intellectual disability. There is data out there. So the NDIS has there is data on support services. So I think there are some projects underway about people getting access and whether it's having a positive effect, but it needs to be investigated

Interviewer

So, Julian, if there's one message you would like to get across about your research, what would it be?

Julian

The message I'd like to get across, sorry, I hope comes across is that's policy should be driven by good research.

We have this amazing opportunity with the data that we have to make an argument for the provision of support services.

And one of the reasons I got into this was the hope that through this, we could actually get support services that actually address the problem. And one can only hope that this works as an evidence base for those that make these decisions, and that it has some effect on what policies we're putting in place.

I think we all want to see things improved in our lifetime. And it's my hope that the work that's done, not just by me, but everyone is, incrementally pushing towards better outcomes for people.

Interviewer

Julian, it's been great to hear about your research. Thank you for sharing your insights with us.

Julian

It's been great. Thank you. Thank you for letting me come in and talk through it with you all.

Interviewer

Doctor Julian Trevor moves as a data analyst at 3D in Julian, undertook his doctorate at the University of New South Wales. He's passionate about the potential for big data to support high quality and impactful research in health care.

This interview was brought to you by 3DN, part of the National Centre of Excellence in Intellectual Disability Health. We are passionate about improving the health and wellbeing of people with intellectual and other cognitive disabilities. We want to make research more accessible for everyone.

You can find out more about us by going to our website www.3dn.unsw.edu.au. And if you enjoyed the show, why not share it with others?

We hope to bring you more interviews and reports from our work. For future shows, look for us on your favourite podcast platform. Just search for intellectual disability health.

This interview was recorded on the unceded territory of the Bedegal people.