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Public hearing 4: Health, Sydney - Day 6

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COMMISSIONER SACKVILLE:   Good morning, everybody.  We welcome everybody who is in the room today and everybody who is watching the proceedings remotely.  Today, as with every day, we commence by acknowledging and paying our respects to the traditional custodians of the land on which we are meeting today, the Wann-gal people.  We pay our respects to First Nations Elders past, present and emerging, as well as to any First Nations people who are present today.  Ms Eastman.

MS EASTMAN:   Thank you.  Good morning, Commissioners.  Good morning to everybody in the room and those following the webcast.  We have three witnesses giving evidence today.  And our first witness is Jaqueline Mills.

COMMISSIONER SACKVILLE:   Ms Mills, come forward.  Thank you very much.  If you would just take the oath or affirmation as the case may be.  Thank you.

<JAQUELINE TERRI MILLS, AFFIRMED                                                                                                                    [10.00 am]


COMMISSIONER SACKVILLE:   Thank you very much.  Ms Eastman will now ask you some questions.

MS EASTMAN:   Commissioners, you will find a copy of Ms Mills’ statement in part A of the tender bundle behind tab 36.  And the statement will eventually become exhibit 4.19.  So your name is Jaqueline Terri Mills.

MS MILLS:   It is.

MS EASTMAN:   And you’ve made a statement for the Royal Commission dated 12 February this year.

MS MILLS:   I have.

MS EASTMAN:   And it’s a statement of some 67 pages.

MS MILLS:   Yes, it is.

MS EASTMAN:   You’ve read it?

MS MILLS:   I have.

MS EASTMAN:   There are no changes to the statements?


MS EASTMAN:   And its contents are true and correct.

MS MILLS:   Yes, that’s correct.

MS EASTMAN:   And the evidence that you’ll give today to the Royal Commission covers a number of different issues.  You want to speak about your personal experience and the experience of your son in relation to access to health care and hospital visits.  Then – and I might need you to do a yes or a no, rather than a nod, so it’s on the transcript.

MS MILLS:   Okay.  Yes.

MS EASTMAN:   Okay.  And you also want to talk about the work that you do with an organisation called Microboards.

MS MILLS:   Yes.

MS EASTMAN:   And you want to talk about some suggestions for change.

MS MILLS:   Yes.

MS EASTMAN:   So we have a lot of material to cover.  And we might start with you, before we turn to your son, and your experience and the work of Microboards.  So in the statement you tell the Royal Commission – this is paragraph 7 – that you are the Managing Director of Microboards Australia and you’ve led the development of the microboard model of support in Australia under the supervision of a Canadian organisation called Vela.  So what can you tell us about microboards, because many people may not know about microboards or be aware of the work you do.  So do you want to just tell the Royal Commission a little bit about how Microboards started and what microboards is and a little bit about how microboards is currently operating?  And I think your primary field of operation is in Western Australia; is that right?

MS MILLS:   No.  We operate across Australia.

MS EASTMAN:   Across Australia.

MS MILLS:   Yes.

MS EASTMAN:   But did it start in Western Australia?

MS MILLS:   It started in Western Australia.

MS EASTMAN:   And you are a Western Australian.

MS MILLS:   I am.

MS EASTMAN:   And it is about just after 6 am in the morning your time.

MS MILLS:   Yes.  Thank you.

MS EASTMAN:   So bear with us for the early start and we’re grateful for the early start.  So over to you.  Tell us a little bit about microboards.

MS MILLS:   Thanks, Kate.  Well, Microboards are part of the movement towards upholding the human rights for people with disability fundamentally.  And they started in Manitoba in Canada more than 35 years ago.  They’re built on the circle of support model, which people in New South Wales may be familiar with.  It’s the idea that we gather a group of people around a person with a disability, who may be family members, friends, people who used to work with them, etcetera, other community members, to form a group that focuses on getting to know the person well, socially including them, hearing their dreams and wishes for their life, helping them to plan, helping them to enact those plans.

The difference between a microboard and a circle of support is that a microboard actually incorporates to become a legal entity, so a Not-For-Profit association that supports just one person.  The reason for the incorporation initially was that microboards were used to free people from institutional care and it was related to funding, because institutions were block funded.  And having built circles of support around some individuals who had been institutionalised for decades, they found that they were able to get them out and into the community to have their own homes and lives, but there wasn’t a funding stream for that, because the government wouldn’t give individualised funding, which is something we’ve really only had in a widespread way quite recently in Australia, with the advent of the NDIS.

So they decided to incorporate the circles of support to become small associations that support just one person.  And the government was happy to give funding in those instances.  So those three first microboards, two of them are still going today.  So they were successful in deinstitutionalisation of some vulnerable people.  And the third one is only not going because that person passed away.  But it’s a very successful model. 

So a microboard is fundamentally a supported decision-making structure.  So it’s not about a board of people making decisions about a person.  It’s very much supporting a person to make their own decisions.  And, over time, microboards support people to make more significant decisions and to have a greater say in their lives.

MS EASTMAN:   What type of people join a microboard?  Is it family members or is it a broader community structure?

MS MILLS:   All kinds of people.  Family members, friends.  We often find that people who used to work with a person will join a microboard.  To be on a microboard, you need to be unpaid.  So it’s a freely given association with the person.  And we find lots of community members join them.  There’s something about the legal structure of a microboard that seems to make it safer for community to engage with supporting a person with a disability.  And what community members tell us is that they have often known of someone or known a person and they really do want to help them, but they don’t know what the rules of engagement are.  They’re not sure how far they’re allowed to go or what their role might be. 

So when you join a microboard, there’s a legal constitution.  It sets out what your role and your responsibilities are.  And one of the key roles of microboard members is actually advocacy.  So people sign up for advocacy and they have permission to be advocates with and for the person, you know, as – as needs be.  And in most microboard constitutions, health advocacy and maintaining and monitoring health needs is embedded in the objects of the microboard.

MS EASTMAN:   So what ‑ ‑ ‑


MS EASTMAN:   Sorry.

COMMISSIONER SACKVILLE:   Sorry to interrupt, but can you explain for the benefit of any technological luddite who might be in the room or, indeed, sitting here, just how it works.

MS MILLS:   Just how it works?


MS MILLS:   So when we bring a group of people together with a person with a disability and we, post incorporation, so a microboard will meet regularly with the person.  Most microboards meet every four to six weeks.  And their role is to hear from the person how life is going.  One of the rules of microboards is actually that the board members include the person in their own lives and networks.  So it’s a way of, I guess, avoiding social isolation for people who are vulnerable, because they’ve got this group of people who are including them in their own friendship networks and other networks that they’re in.  So we find that lots of opportunities for relationships or work or all kinds of thing happen via that process.

COMMISSIONER SACKVILLE:   Does technology play any part in it?

MS MILLS:   It does, in terms of – we generally – we use an online system for microboards to keep their meeting minutes and all other relevant information about the person.  So, clearly, being on a microboard means knowing the person very well.  And a big part of our work is actually supporting families to get all of that really critical information on record about the person in a safe online forum, so that microboard members can access that information.  Because, the evidence is that, microboards survive parents.  So if we look at what has happened in British Columbia where the model’s really grown the most, so there are over 1300 microboards in British Columbia.  You can imagine over the last 35 years, a number of parents have passed away.  And the evidence from there is that the microboards are actually stepping up holding the vision of the parents and maintaining the good practice and meeting the person’s needs after we’re no longer here.  And, of course, that’s the big question for all of us as parents, is how our loved ones will stay safe.


COMMISSIONER GALBALLY:   Kate, can I – so it has become – you know, in British Columbia it’s really taken off.  And in Australia it’s still struggling.  Why would that be, do you think, in terms of ‑ ‑ ‑

MS MILLS:   It’s primarily because of funding.  So in British Columbia microboards have been block funded by the state government.

COMMISSIONER GALBALLY:   The microboard association.

MS MILLS:   The microboard association.  So they don’t need to get funding from individuals that want microboards.  They’re actually able to run a really efficient and stable service.  It’s different here for us, because we rely on individuals being funded by the NDIS in the first place, which generally we’re finding isn’t happening very often.  But also funding via an NDIS model might give us enough funding to maintain a service, but it doesn’t give us enough funding to run an organisation.  And, consequently, I would say the majority of work that we do is voluntary unpaid by parents who are very committed to – and others who are very committed to maintaining the model.

COMMISSIONER GALBALLY:   How many do we have in Australia?

MS MILLS:   There are about 15 microboards in Australia.  Microboards Australia is working on 25 microboards at the moment.  Some are close to incorporation, others have got a little bit more work to do.  We’re quite thorough.  It takes some time to form a microboard.  We normally take one to two years, because setting up a structure that’s enduring takes some work, getting information down, making sure everyone on the board understands the principles, so that culture of the starter organisation is very strong.  And helping them to have a vision of the future, how to work towards that, how to get to know the person, etcetera.  Lots of people think we just get groups of people and incorporate them.  And that’s easy.  The incorporation part’s easy.  Building a structure that is going to last for 30 years actually takes quite a bit of knowledge and really intentional, careful work.

MS EASTMAN:   And what’s the role of the person with an intellectual disability in a microboard structure?

MS MILLS:   So the – ideally, in the microboard model the person is a member of their own microboard.  They are – whether or not they choose to be on the board or not, they are the leader of the board.  The role of the board is very clearly to support them in their wishes for their life.  Primarily, we’ve worked with people with quite high support needs.  And often we start out with people who don’t have a communication system.  So a fair bit of the work we do is actually getting communication systems in place and getting to know people better and what their preferences are, and helping the people on the board to work out how they can get to know the person really well and hear their voice, however it may be that they communicate.

MS EASTMAN:   And you’ve said in your statement that Microboards was formed mainly as a result of voluntary work and a commitment of a small group of families.  And in the process of forming Microboards Australia, the intention was to uphold self-determination, social inclusion, human rights, and equality of life for vulnerable people.  But it was also to connect other parents.  And then, in the course of doing this, you realised there were significant gaps in a wide range of areas, such as communication support, understanding behaviour, and access to medical and dental needs.

MS MILLS:   Yes.

MS EASTMAN:   So looking at the way in which microboards developed and the work that you’re doing now, how can microboards support people who may not have a family structure around them and be in very isolated, closed or segregated settings?  Would microboards work for a cohort of people who don’t have strong family support?

MS MILLS:   Yes, we would.  And those first microboards that were formed were actually around people who had been isolated in institutional care for decades.  The way that they approached that and the way that we approached that, as well, is that in terms of getting to know a person well, you can work out where in the community that you might find people that align with them.  So I know in one of the first microboards they found out that one of the people was quite religious.  So it’s a little bit of a no-brainer to look around with them and find a church that they can join. 

Sometimes we work out something about a person’s values.  So there’s a man that I know who loves birds and nature and the environment.  So we might go and look in those kinds of spaces for people where there’s something to connect over; there’s a commonality of interest.  We’ve built a couple of microboards around people who are very isolated, but they’ve not been in supported accommodation settings.  And I guess one of the questions is how someone who is in one of those settings would be able to ask for a microboard in the first place.  That would – that would be a little tricky, as the way things stand.

MS EASTMAN:   And your role with Microboards Australia has meant that you’ve come to learn a lot about the experience of people with intellectual disability accessing health services, not just the experience of your son; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   And so the evidence that you’re giving to the Royal Commission today is not just the personal experience, but also what you have borne witness to for other families and for other individuals; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   So last question I want to ask you about microboards specifically, but I think it’s a resonating theme throughout the whole of your evidence, is the relationship with the NDIS.  So how does the NDIS touch on or have any bearing on the work of Microboards Australia?

MS MILLS:   Well, some individuals – and it’s more common in Western Australia than in the eastern states, but they’re able to ask for funding to establish a microboard in their NDIS plan, as long as the formation of that board aligns with their other NDIS goals, which are generally the case.  The microboard’s a flexible structure that’s able to support people in all kinds of ways.  So the first groups of families, for example, all had young adults, and all had a vision of them living independently in their own homes.  They were all really quite complex people.  And we as a group achieved that in the first three years, that all of these individuals, who had basically been excluded from regular services because they were too complex, had their own homes, they had choice and control in their homes, they chose their teams and they had a life that they designed that they were really happy with.  So that kind of outcome really aligns with the, you know, the vision of the NDIS.

MS EASTMAN:   Now, we’ve just touched on microboards in a very small way this morning.

COMMISSIONER GALBALLY:   Could I ask one more question.

MS EASTMAN:   Of course.

COMMISSIONER GALBALLY:   What would it take to lift microboards up in Australia and take, you know, this model that has been so successful in Canada, right across the country?

MS MILLS:   As much as I, I guess, dislike having to say this, it would just be a matter of funding.  I mean, I work part-time for microboards, but we run out of money in June, so there won’t be a paid role for any of us post-June.  We’re – we’ve got a whole group of people who are highly skilled, keen to do this work, but that’s the main – that’s the main barrier.

COMMISSIONER SACKVILLE:   If someone is on the NDIS and they want to be involved with microboards and you said, well, funding may be available, but how much funding is needed for that person and what is it used for?

MS MILLS:   So we suggest to people that they plan for a two year process to form a microboard and we suggest that they plan for about $8000.  And that money pays for microboards facilitators to work with the individual, the family and then to support them.  Some people come to us and they already have a circle of support, so there’s less work involved in bringing a microboard together, but other people come and they’ve only got one or two people, and they really need help to start from scratch in terms of building relationships, and that takes time and that’s somewhat more labour intensive from our point of view.

COMMISSIONER SACKVILLE:   And who are the people that come to provide that support and those links that – as supported by the $8000 or whatever the sum might be?

MS MILLS:   So who are the people that want microboards or who supports the microboards?

COMMISSIONER SACKVILLE:   Who supports them?  You said that $8000 would be ‑ ‑ ‑

MS MILLS:   Yes.

COMMISSIONER SACKVILLE:   ‑ ‑ ‑ the amount required for two years and that would presumably pay for people to come ‑ ‑ ‑

MS MILLS:   Yes.

COMMISSIONER SACKVILLE:   ‑ ‑ ‑ and be involved.  Who are those people and what ‑ ‑ ‑

MS MILLS:   Well, I’m one of those people.


MS MILLS:   We have – we’ve got five microboard facilitators.  So there’s myself, there’s a parent who joined microboards.  Her son’s microboard has been going for 10 years and she’s really passionate about the model, having seen some good results.  I have one professional who has a lot of experience in a whole range of areas supporting people with very complex needs.  We’ve got another person who’s a former local area coordinator in Western Australia and another person who’s the aunty of someone who has a microboard.

COMMISSIONER SACKVILLE:   And are these people all volunteers?

MS MILLS:   Most of the time, yes.  We’re able to pay people sometimes for some of the work, but everyone does a significant amount of voluntary work as well.


MS MILLS:   Yes.

MS EASTMAN:   So as I said, we’ve touched very briefly on microboards and there is a lot of information that’s available on the microboards website.  So we thought, Commissioners, it might be helpful just if we put up the website, so that if people have followed the webcast and they’ve got questions, then one starting point is to look at the material on the website.  So I think that’s coming up.  So this is the microboards website.  Do you want to say anything about how the website works, and what information would be available on the website that we have not had time to cover this morning in your evidence?

MS MILLS:   I think there’s general information about microboards but I might just draw your attention to, if you scroll down, our other work.  If people click on there, there’s a link to planning for health and medical needs.  And if you follow that pathway, then there’s some resources that we’re sharing with people around planning for health needs for people with disability generally, about also high support needs and also there’s a link to our report.

MS EASTMAN:   All right.  So we will touch on microboards as we go through your evidence.  Can I come back to just ask a little bit more about you, and you’ve said over the years that you’ve found yourself in situations where advocacy is needed and that you’ve done your best to learn how to be an effective advocate.  You’ve never been a paid advocate but you have invested in learning from professional advocates who have shared their skills.  So one aspect of the evidence that the Royal Commission has heard over the course of the last week or so is the importance of advocates.  And often parents become the default advocates and are in that role without any training or experience, but I think some of the witnesses said that they learned on the job.  What have you done, in terms of learning from professional advocates and developing your skills in the area of advocacy?

MS MILLS:   Well, Microboards Australia have a partner organisation, Developmental Disability WA, which has been around for about 30 years and have a strong systemic and individual advocacy role, and there’s – in particular there’s one advocate on staff there who has decades of experience in the area of health advocacy and so I’ve learned from her, because she’s an exceptional advocate, and we also ‑ ‑ ‑

MS EASTMAN:   Sorry, what makes her an exceptional advocate?

MS MILLS:   Exceptional advocate.  I think she comes from a position of advocacy primarily being about relationship building, and helping parties to understand each other, and for her a good outcome is that, you know, we build a relationship of trust where we can work together.  And a lot of the feedback about her work from people is that actually quite conflicted situations have been able to settle down and people have been able to build a good partnership, whether that’s in a health setting or an educational setting.  I think the other thing that I know about her is that she won’t stop, though.  So if a person with a disability’s rights are being violated and they are vulnerable, she will do what it takes to get to the best possible outcome, and there’s a range of different ways of doing that.  Sometimes people do need to be strong and forceful in, you know, how they respectfully communicate to people.  So I – I’ve learned a lot about that around, you know, having the vision of a peaceful outcome, but then being respectfully strong when you need to be, yes.

MS EASTMAN:   So there’s different forms of advocacy.  There’s the individual advocacy but there’s also the systemic advocacy.  So the work that you’ve been doing as an advocate covers both areas; is that right?

MS MILLS:   Yes, I believe so.

MS EASTMAN:   So often, someone might start because of a particular family member or friend or a person for whom you care, and the focus of that advocacy is individual advocacy.

MS MILLS:   Yes.

MS EASTMAN:   But then, over time, perhaps as the networks expand, there’s the role of systemic advocacy.  From your experience, are the skills required in both individual advocacy and systemic advocacy the same?

MS MILLS:   To an extent.  I think that systemic advocacy requires a relationship-building approach, and partnership.  And it’s really – I mean, a lot of the time in – in our work it’s about finding a way for the voices of the collective to be heard and understood by the system.  I wouldn’t think – and I’ve certainly – I haven’t in any of my practice escalated anything in systemic advocacy.  It’s really been about building those relationships and coming to a shared understanding.  And I believe that systems – you know, whilst they can do things that are really damaging to people, I don’t believe that the people in those systems do want to do that. 

I really believe this is around communication and understanding.  And very often, the voice of people just isn’t heard.  You know, for example, in WA we’ve got the Side By Side community, which is the first time I’m aware of possibly in Australia a community of families who have loved ones who experience very challenging behaviour actually being brought together as a collective.  We’ve got about 150 families in that group.  And it has been quite powerful to be able to gather their thoughts.  Sometimes we represent their thoughts to the Minister and other bodies, and they’re absolutely being heard.  There just hasn’t been that framework in place before, I guess, for that to happen.

MS EASTMAN:   And I think the Royal Commission has heard evidence over the past week that there are very strong advocates who are individual advocates for their particular family member, but also need to have that broader support.  And I think one of our witnesses last week, Toni Mitchell, talked about how the Facebook and how social media has become a really strong support for her in the advocacy work that she does for her son.  And have you found also that new technologies and social media have assisted in advocacy?

MS MILLS:   Absolutely.  We host a number of Facebook pages, and I’m a member of a number of pages, both nationally and internationally, that are composed of parents.  And it’s certainly a place where you can learn a lot, as well as to get support from peers.

MS EASTMAN:   Right.  Okay.  So moving on with some of the other work that you’ve done.  You also have chaired the Positive Behaviour Framework Guiding Committee in Western Australia.  And so you’re still the Chair of that group; is that right?

MS MILLS:   No, that group no longer exists, because the Disability Services Commission has transitioned over to the Department of Communities as the NDIS has rolled out.


MS MILLS:   Yes.

MS EASTMAN:   But when you were taking on that role as the Chair, something that you did for a period of five years, and the focus there was on sector reform on the reduction of restricted practices; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   Just briefly, what was the nature of the work that you did as Chair of the Positive Behaviour Framework Committee?

MS MILLS:   So it was reviewing the recommendations of a report that was done about the experience of people with disabilities specifically who experienced challenging behaviour in Western Australia.  And there was work done with organisations.  So we ended up with 45 disability sector organisations on the group who voluntarily were there, and some of those organisations agreed to do a review of the use of restrictive practices in their organisation, which was fantastic, and they were willing to get up and speak about that experience.  And those organisations found that about half of the restrictive practices being used were unnecessary, and they were able to let them go.  And then were able to start working towards eliminating some of the others. 

We found that a lot of people were being medicated.  I think the statistic was roughly 60 per cent of people in supported accommodation in Western Australia were being medicated for their behaviour, which is also an example of a restrictive practice.  The other work was – which I think made the process quite powerful – was actually looking at the experience of families and what families needed.  And that was where the Side By Side Program came from.  So families who have loved ones who experience challenging behaviour typically have multiple complex challenges and end up being profoundly isolated, including from their own families.  And that  program, that’s in its sixth year now, has been really powerful in terms of building up peer connections and reducing isolation. 

The third thing was around providing education for the sector and for families around understanding restrictive practices, and in the end Microboards Australia was successful in taking on that aspect of work, and we developed the ‘Is There a Better Way?’ program that’s still running.  And that’s a program about behaviour, not where we’re telling people what to do about behaviour, it’s fundamentally helping people to understand that people with disability are people like anybody else.  It’s behaving in challenging ways is part of being human.  It’s not a result of a disability diagnosis.  It’s something that we can all do at times when our needs are not being met or if we’re under enough stress. 

And it’s very much a human rights-based approach as well as a neurological approach to behaviour.  And that program’s been evaluated by the school of business at UWA as making a lasting positive impact on the quality of life for families with loved ones who experience challenging behaviour.  And as you can imagine, health features in that program, and raising awareness that – you know, some studies are saying that between 50 and sometimes as much as 80 per cent of challenging behaviour for people with disability is the direct result of unmet, undiagnosed, untreated health needs.

MS EASTMAN:   Okay.  And we’re to talk shortly about some examples of restrictive practices and how you’ve come to think about restrictive practices and their use in the health model.

MS MILLS:   Yes.

MS EASTMAN:   The other point that you mentioned was education.  And this is something that you’ve been involved in.  You developed a new postgraduate certificate in Special Education: Complex Communication needs.  And that’s now into its fifth year.  And that was a course that you developed in collaboration with Edith Cowan University in Perth; is that right?

MS MILLS:   That’s correct.

MS EASTMAN:   And do you do some lecturing in that unit or ‑ ‑ ‑

MS MILLS:   I do at times, yes.

MS EASTMAN:   Okay.  What can you tell the Royal Commission about what your role is, not only in developing the course, but also delivering the course and teaching?

MS MILLS:   Well, the reason the course came about originally was because when we were forming microboards – and clearly microboards need to be able to hear the voice of the person.  The majority of people we work with are people who can’t use words to communicate.  And my son is one of those people, as well.  And what we found is that there wasn’t any knowledge or supports at the time, you know, about eight years ago, to help us to do that.  Everyone had been deemed incapable of using communication devices, and, you know, we had been left – left at that. 

So we did a fair bit of research and found out that things had moved on and that there is a lot more knowledge now about how to support people to communicate, particularly using communication books or robust communication systems.  And that led us to understand that the majority of speech therapists who work with people with complex communication needs did not have any training in any of these systems.  There were a few, but they were practitioners who had taken responsibility for their own learning.  So this wasn’t being taught at university.  So not to teachers, not to speech therapists.  It just wasn’t there at all. 

So part of Microboards Australia work is having a long-term vision for people to have good quality of life.  And it seemed to us that getting that information being taught at university level was a matter of some urgency and the most efficient way of responding to the lack of qualified knowledge in the area.  And I would say, five years on, that’s been a good investment.  We’ve got a number of schools in Western Australia now.  And the course is available online across the country, as well in other places where they have a policy that every child with complex communication needs has a device.  And there’s some much better practice in place.  We recently added a behaviour unit that’s based on the ‘Is There a Better Way?’ program that ran last year.  And there’s a great deal of interest and need for that understanding, as well.

MS EASTMAN:   All right.  Can we turn now to your son and talk about some of his experiences in the health system.  So he’s now 29 years old.  And he has Angelman Syndrome.  That’s a genetic condition.

MS MILLS:   Yes.

MS EASTMAN:   And it results in high support needs.

MS MILLS:   Yes.

MS EASTMAN:   Complex communication needs.  He experiences seizures.

MS MILLS:   Yes.

MS EASTMAN:   And issues with gross and fine motor skills; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   So he uses a wheelchair most of the time.  And he’s considered to have very high support needs.  He requires, as you say, a 24/7 support.  So he can also experience challenging behaviours from time to time.  So your family have established a microboard for him.

MS MILLS:   Yes.

MS EASTMAN:   And you’ve tried your best, you say, to support him in having a good life.  So dignity and quality of life is absolutely critical to what microboards seek to achieve; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   But he doesn’t live with you.


MS EASTMAN:   He lives at his own home with his friends.  He has a girlfriend.  He uses a communication device to write, to talk.  And he’s also a bit of a public speaker and advocate himself; is that right?

MS MILLS:   Yes, he is.

MS EASTMAN:   All right.

MS MILLS:   Yes.

MS EASTMAN:   So, what, he gives workshops and conferences?

MS MILLS:   He does – he does short presentations, because it’s a lot of work for him to write and present a talk, but he has presented at workshops and conferences.  He’s recently trying his hand at stand-up comedy.

MS EASTMAN:   I saw you said that.  How’s that going for him?

MS MILLS:   Pretty good.  He’s getting there.

MS EASTMAN:   And he loves travelling.

MS MILLS:   He loves travelling.

MS EASTMAN:   And there’s a few things he’s really keen on.  And they’re trains, music and theatre.

MS MILLS:   That’s right.

MS EASTMAN:   And, as far as you can see, that – he does have a quality of life and the maintenance of that quality of life is absolutely important.

MS MILLS:   Absolutely.

MS EASTMAN:   But he has also experienced some traumatic events at hospitals and in a medical context.  And you’re concerned that over the course of his life these traumatic events have compounded to him having a post-traumatic stress disorder, and that that, in turn, creates sometimes a cycle of distress and trauma when he has to engage in a medical setting, be that from an ambulance or through to a surgery or significant procedures; is that right?

MS MILLS:   That’s correct.

MS EASTMAN:   And in the evidence that you want to give to the Royal Commission, you want to just focus on a couple of particular incidents that have arisen that you say are illustrative of some of the complexities of his needs and how those needs haven’t been met adequately and, I think fair to say, lessons that you’ve learnt along the way.  And before we start to look at it, I think you’ve said throughout this statement – and I want to ask you about this – that at times you feel that you’ve failed him or that you haven’t done enough or that you’ve let him down.  And, in reading that bit, you’ve been very candid about your own sense of letting someone down. 

But you’re not saying that, in a sense, to gain sympathy or – but it’s to help us sort of understand where, as a family member, sometimes there’s only so much that you can do, and sometimes there’s only so much that you can know, particularly in a health setting.  And you wanted to say something to the Royal Commission about having that sense of letting somebody down as their advocate, but also what that has taught you, in terms of strengthening your overall advocacy.  So that’s a very longwinded way of asking you that question.

MS MILLS:   Yes.

MS EASTMAN:   But we’ve talked about this.  And I would be interested if you want to share with the Royal Commission that sense of it.  And that may help us then look at some of these particular examples.

MS MILLS:   Absolutely.  Do you want me to speak specifically about examples or just generally?

MS EASTMAN:   If you – if it’s easier to explain by reference to some of the particular examples, then by all means do that.

MS MILLS:   Okay.

MS EASTMAN:   But I just – I wanted to make sure that when we went through your evidence and people who read it, when you say you felt that you had let your son down or had failed him, to understand the context in which you’re saying that and why you’re saying that.

MS MILLS:   I think that as time has passed – I mean, unfortunately my son has had a lot of engagement with medical system, not because of his disability, but because having disability means that simple things for other people like breaking bones or going to the dentist become very complex and sometimes life-threatening things.  As time goes by I have learned and I know – and I’ve had so much experience to understand that, you know, he doesn’t express pain in typical ways and that medical decisions need to be made in certain ways.  But there are instances where, despite that knowing, I’ve gone along with a medical decision that’s actually not been in his best interests. 

And I need to be clear that when I reflect on that – and, of course, there’s a deep sense of remorse as a parent when those things happen.  And I believe I’m probably speaking on behalf of a number of parents who have been through similar experiences – that when we’re in that situation and it’s our loved one who we care for so much – and very often if it’s a health issue, there’s some fatigue in place, there’s sometimes some trauma already around what’s been going on for the person – that we’re not well placed always to advocate for our loved one. 

I think we’ve seen that through the Side By Side families, as well, who share that experience in a range of settings, not just health.  And that’s why we have a practice in place that a parent should actually never be left alone in a situation where there’s a decision being made of significance around their loved one, because it can be too much for us to hold that and to be objective in that scenario.  I think that’s one reason why we urgently need the system to be better and for medical professionals to understand these issues and to be able to support us at those times to make better – the best decision for the person.

MS EASTMAN:   So I think sometimes there’s a tension, in the sense that as the parent you know your child or your family member very well, and that need for medical practitioners to listen to you ‑ ‑ ‑

MS MILLS:   Very much.

MS EASTMAN:   ‑ ‑ ‑ to understand the person.  But there will also be times when, even though you have a deep knowledge of your family member and their circumstances, that that knowledge itself may not be enough.  And so it’s having that awareness as a parent as almost to the limitations of what you can do to assist a family member.  But it’s then having the support to be able to help make decisions or, more importantly, help the person with intellectual disability make the right decision.  So there’s a little bit of a tension in that.  And it’s a delicate issue to raise.  And it’s a delicate balance to find at times, isn’t it?

MS MILLS:   I think so.  But I think if we imagine lots of parents in their first engagement in the medical system, they’ve not been prepared for it.  And most people don’t have the skills or the self-confidence or the experience to be strong advocates to challenge a medical decision.  They just – they just don’t.  That is a difficult thing to do.  And it’s a difficult thing sometimes for families to know to do that.  They may feel that it’s not the right choice, but, you know, they’ll have self-doubt around that, as well, and not know how to engage in a robust conversation around what’s happening and why.

MS EASTMAN:   I think one of the examples that you give in the statement, which is around paragraph 33, is when your son had a fall and injured his foot.  And you went to the hospital and you thought there needed to be an X-ray done, but there was a long wait and the practitioner said, “Look, if there’s a broken bone, there’s not much we can do.”  And this was an occasion where you were trying to explain that the nature of his disability meant that he would express pain perhaps in a different way.  But this was an occasion where there wasn’t an X-ray done. 

Then, some years later, there was another accident with your son’s foot – this time a television was dropped on his foot – that required a hospital presentation.  And this time you stood your ground.  And so you really insisted that an X-ray be done.  And then the outcome of that was sort of quite unusual, wasn’t it?  So the X-ray was done.  There was no break, as a result of the television incident.  But the X-ray technician and radiographer looked at that and said he’s already got three broken bones in his foot.  And you immediately assumed that this was as a result of the earlier incident.

MS MILLS:   Yes.

MS EASTMAN:   But how did the medical practitioner react to you in seeing on an X-ray that somebody already had three broken bones and nothing had been done?  So that was a bit confronting for you.  What happened ‑ ‑ ‑

MS MILLS:   It was.

MS EASTMAN:   ‑ ‑ ‑ on that occasion.

MS MILLS:   They seemed to me to be quite hostile and judgmental of me and almost accusatory that he’d had broken bones previously that had clearly not been treated properly or set.  And they said that he had a permanent deformity as a consequence of those and were very interested in how that prior injury may have occurred.

MS EASTMAN:   So standing your ground also resulted in some criticism, because you hadn’t stood your ground ‑ ‑ ‑

MS MILLS:   That’s correct.

MS EASTMAN:   ‑ ‑ ‑ a number of years before.

MS MILLS:   Yes.

MS EASTMAN:   So this is sometimes a double bind that you can find yourself in.

MS MILLS:   It is. And I should say it’s not uncommon in Angelman Syndrome, at least anecdotally, this occurs reasonably frequently.  Parents will say that the person has walked on broken bones or at a later stage they find out there have been bones broken, because people with Angelman present so differently when they’re in pain.  And, actually, it’s taken me a long time to recognise which of my son’s behaviours are pain-related.

COMMISSIONER GALBALLY:   Would a microboard have helped you negotiate the previous occasion, as well as the second occasion?

MS MILLS:   Absolutely.  And my son’s microboard are all trained in advocacy and they do come into medical settings with us now if we find ourselves in that situation.  When he was hospitalised last year there was a microboard member every day.  Everyone just shared the load.  You know, it was – he was in for three weeks, I think, so people came in three times to be present and to see how they could support us, which was fantastic and a much better experience.

MS EASTMAN:   Another example that you give was that when your son was in his teens there was an occasion where he had been vomiting over a period of 24 hours.

MS MILLS:   Yes.

MS EASTMAN:   And that you tried to get some assistance from a locum service.  And he received a diagnosis of gastro and told that it would – it would get better.  But over the course of the next two days his condition deteriorated.  And that resulted in having to have a hospital admission.  And it was discovered that his appendix had already burst.  So this is an example where, perhaps, the way in which your son expressed pain and makes an expression about how he is feeling may be a bit different; is that right?

MS MILLS:   That’s correct, because the doctor who came to the house, you know, three consecutive days, had – and I didn’t realise this is what he was doing, but he was pressing on his stomach and watching for signs of pain, and that’s why he wasn’t diagnosed with appendicitis, but for some people you cannot use pain as a diagnostic tool.  We just can’t do that.  And really, he should have gone to hospital after, I think, just one day.

MS EASTMAN:   The consequence was that he then had to have some difficult surgery.

MS MILLS:   Yes.

MS EASTMAN:   And that this caused him some significant difficulties.  He almost lost his life.

MS MILLS:   Yes.

MS EASTMAN:   He had to remain in hospital for a very long period of time.  And was this the occasion where a friend’s father, who was a medical practitioner, made a comment during the time that your son was in ICU that, “Maybe it would be for the best that he didn’t survive”.  And how did that have an impact on you?  He – your son’s a teenager at this time.

MS MILLS:   Yes.  Ultimately, it had a really positive impact on me because I was really confronted by that thought, and it just caused me to think about things and think about how I felt about my own son and to what extent I viewed the challenges that he presented as a burden.  And, you know, there’s – generally when we talk about parents of kids with disability there’s a lot of conversation about how we have chronic sorrow and ongoing grief and about all the stuff that maybe our kids miss out on. 

And I think that what that led me to was to realise that my son’s awesome.  I have no regrets about his existence on this earth.  I couldn’t see my life having any quality or meaning without him.  And it just really shifted me to choosing him, you know, choosing this life, and I just thought while – because there was a few days we didn’t know if he was going to make it, I just thought, you know what, if he makes it I’m going to embrace every day, I’m going to embrace every challenge and I’m going to be so grateful that I get to keep him.

MS EASTMAN:   One thing it certainly did was to cause you to say, “I’m going to find ways of ensuring that the communication is effective for him”.

MS MILLS:   Yes.

MS EASTMAN:   And you say in your statement that this – these incidents in early days in the hospital caused you to start to work very closely on the Augmentative and Alternative Communication, ACC.  And that occurred for your son in his 20s.  So can you tell the Royal Commission about the ACC and how has that made a difference for him in terms of communicating just generally, but more specifically communication about his health and being able to tell you how he’s feeling, how he might express pain, and when he needs assistance?

MS MILLS:   Sure.  So it’s augmentative and alternative communication, which is AAC, and that’s any communication system that can be used with a person with disability.  I think one of the revelations that we’ve had about people with complex communication needs learning to use AAC is that the practice we use is really important, and lots of people give up way too soon before giving the person the right kind of support.  If you think about how young children learn language, we learn it by being immersed in it, seeing it used in a whole range of contexts.  Babies and small children hear so many tens of thousands of words before they actually utter their first word.  What we know now is the same is true of a communication system.  So if you have a communication book or a device, historically people have just given this to my son and then expected him to use it. 

What shifted for us was understanding that he needed to see other people using it.  And he also needed to see it as something that empowered him not something that was used to give him instructions or where there was an expectation that he would somehow use it the right way.  So when it came to supporting him to learn how to tell us what’s wrong, we did a really targeted approach of everyone around him using his communication system to model how to do that.  If I felt tired I would say, “Gosh, I’m tired today.  I’ve got a headache, I need a Panadol”.  Or we’re watching a TV show, “Look, you know, that person has got a broken leg.  I bet that hurts in their leg”.  You know, lots of this.  We got all of his friends and all of his support team to model and to show him how it was used, and I think it was only about three months before he then started having a go at telling us things. 

I would say, overall, it’s been a five year process to get to the point we’re at today, where we’ve gone from we have no idea what’s going on for him, to him being able to tell us in detail which part of his body is in pain.  He was able to tell us last year that his back hurt.  And so we went and got that attended to and found out that his scoliosis had worsened.  He can tell us he has got pain in his feet and find out he has got bursitis.  He can tell us when he’s going to have a seizure sometimes.  So it’s worth investing in but I think people really need to understand that the more complex people are, the longer term vision we need to have.  And really, if this was able to start in school, then by the time people reach adulthood, I believe the majority of people with complex communication needs would be able to tell us to some degree at least when things are starting to go wrong for them health-wise.

MS EASTMAN:   All right.  One other issue that you raise in the statement is understanding postoperative care and the impact of an anaesthetic on a person with an intellectual disability.  And you speak about your son’s experience having to have some wisdom teeth removed.  And so is it fair to say that you approached initially the special needs dental service with some, perhaps, cynicism?  Would that be a fair comment, that you were ‑ ‑ ‑

MS MILLS:   Concern.

MS EASTMAN:   ‑ ‑ ‑ not sure – concern.

MS MILLS:   Yes.

MS EASTMAN:   That you weren’t quite sure whether or not it would be able to meet the particular needs of your son, but you were prepared to give it a try.  And you say in your statement that in terms of the specialist disability dentist who treated your son, that you found – I think you say you were very lucky to find him.  He was very skilled in working with people with high support needs, and especially people experiencing challenging behaviours.  So the Royal Commission may be interested in what was it about his mode and manner of treatment that worked?  I know you say in the statement that he took a relationship-based approach working with your son, but – and you may want to speak about this because step one was taking out the wisdom teeth, but what followed after that, in terms of the postoperative care, was very challenging as well.  Do you want to tell the Royal Commission about that experience?

MS MILLS:   Sure.  I guess in terms of that particular dentist, he had a lot of experience and was very up for, you know, things like my son visiting a number of times just to meet him and say hello and get to know him.  He was a very warm person.  You know, he addressed my son directly, and understood how to make a connection with him, and that was the first most important thing for him.  And over time, my son became – came to feel very safe.  So now when we go to dental appointments, he just runs in, grabs a magazine and lies in the chair and opens his mouth ‑ ‑ ‑


MS MILLS:   ‑ ‑ ‑ because he feels very safe with this person.  But it has taken some time.  I just need to be clear about that, but it’s a really good place to be.  I think his dentist has a lot of experience and also supporting people in supported accommodation, and he cautioned me very strongly about postoperative care for my son after wisdom teeth.  He said that things can go wrong very quickly for people with high support needs.  He had great concerns about people who cannot speak and are not necessarily able to raise the alert if they’re not doing so well, and he said that in his view all people with high support needs should be in ICU post-general anaesthetic dental treatments, and certainly something like having four wisdom teeth removed.  But the hospital and the dental services are not receptive to this.  I’ve had friends ask for this in similar situations and it’s not granted.  So he advised, in the absence of that, that I check on him regularly during the night.

MS EASTMAN:   Well, you did.  You did that, didn’t you, after the surgery that you were doing the two-hourly checks?

MS MILLS:   I did.  Although, if I may be honest, what actually happened – and this is another example of a failing on my part – is that I managed to sleep through the 4 am check.


MS MILLS:   So there was 12, 2 – I was exhausted and somehow I slept through the 4 am check.  And then so it was four hours.  When I woke at 6 am he was blue and barely breathing and he had a lot of – a lot of trouble.  So we called an ambulance and he was rushed to hospital and he almost died as a result of that.  And I just really want to be clear about that point, that I don’t think that we can be leaving vulnerable people dependent on parents or other care-givers when the stakes are so high.

MS EASTMAN:   That caused ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Ms Eastman, sorry to interrupt, but just for planning purposes, could we have a break in about seven or eight minutes, just when it’s a convenient time.

MS EASTMAN:   If that’s convenient.  We might just deal with this topic, so we complete that and then we will have a short break.


MS EASTMAN:   He was in hospital for about a week or so.

MS MILLS:   Yes.

MS EASTMAN:   And you did most of his personal care.

MS MILLS:   Yes.

MS EASTMAN:   Again, on a 24/7 basis while he was in hospital.

MS MILLS:   Yes.  And that’s the experience of most families that I know.

MS EASTMAN:   And he required to have constant antibiotics delivered by an IV drip.  A line was inserted.  So he had a cannula.

MS MILLS:   Yes.

MS EASTMAN:   But he kept pulling it out.  And you were terrified that if he kept removing it, then the antibiotics were not going to be effective and not work.  And this is an example where restrictive practices arose.  You had to physically restrain him to keep the cannula and the line in.  But the hospital staff refused to help you to do that.  So you got to a point, didn’t you, where after two nights and very little sleep you begged one of the doctors to help you because you couldn’t keep doing it yourself, and the doctor looked around and said, “Okay, but you can’t tell anyone I helped you do this”.  And so you promised that you wouldn’t.  So we haven’t identified that person for the purpose of your evidence. 

But this is all that he did.  He found some tape.  You gently bound your son’s fingers together so he couldn’t remove the cannula.  It was done in a way where your son didn’t have any signs of distress and that you thought that this was less traumatic for him than being physically restrained by his mother, and it enabled you to be able to attend to other aspects of his care.  And so when we talked earlier about the things that you’ve learnt in relation to restrictive practices, this is an example that you wanted to talk about, because I think your view is that you’ve fought long and hard to eliminate restrictive practices, but sometimes there may be occasion where it does need to be used to achieve a better outcome.  Is that – am I putting that in the right way, in the words you would say?

MS MILLS:   Yes, that’s correct.

MS EASTMAN:   Do you want to speak about that.

MS MILLS:   I do.

MS EASTMAN:   Because you talk about this in detail in your statement and I think you give examples that you know of other parents having literally to sit on their child to make sure that cannulas and lines and ‑ ‑ ‑

MS MILLS:   Stitches.

MS EASTMAN:   ‑ ‑ ‑ stitches and things like that remain in.

MS MILLS:   Yes.

MS EASTMAN:   So this is something that you feel we need to talk about, to better understand, rather than just have very black and white approaches to it.  So this is in paragraph 51 and 52 of your statement.  Do you want to talk about that and then, Commissioners, we will have a short break after that.

MS MILLS:   Okay.  I think there can be a view, as there’s more awareness raised, that restrictive practices are bad, period.  But they’re neither good nor bad.  It’s the context in which they’re used that makes them okay or not okay for a person.  And in this example, where my son was pulling out his cannula, this is prior to the time when we had a way of explaining to him what was going on and why.  So it is not my belief in pulling out his cannula that he was making a conscious decision, fully aware of the consequences that he would die without this treatment.  I believe that my son wants to live and that our job is to make sure that that happens, using perhaps some restrictive practices, if necessary in those isolated emergency situations. 

I think the other thing to be aware of too is that people with disability often have sensory processing differences and they may not be fully in control of what their body is doing.  My son has lots of sensory processing and his body moves in lots of ways.  And we’ve come to understand over time that that’s not necessarily what he wants his body to be doing at that time.  But sometimes people make the assumption to say, “He’s doing that action, therefore he wants that thing”.  It’s not necessarily true.  So I think I always need to come back to what’s important for that individual person and what we know, and are they really making a choice to refuse treatment?  I don’t believe that he was.  I believe that we were actually, in using that restraint at that time, upholding his desire to live and to continue to have a good life.

MS EASTMAN:   If that’s a convenient ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ time, Commissioners.

COMMISSIONER SACKVILLE:   We will take a break for about 10 minutes.

MS MILLS:   Thank you.


ADJOURNED                                                                                                                    [11.00 am]


RESUMED                                                                                                                    [11.19 am]


COMMISSIONER SACKVILLE:   Yes, Ms Eastman.  Ms Mills, if you would be good enough to go back to your seat.  Thank you.

MS EASTMAN:   Just before we start, it’s been drawn to our attention that there’s been a few disruptions this morning in the webcast.  And the Royal Commission team is seeking to rectify that issue as we continue.  So if there have been disruptions, we certainly apologise for that.  A full recording of the proceeding will be available on the Royal Commission’s website.  And that occurs at the end of each day.  And anybody can access a full recording of the broadcast through the Royal Commission’s website.  So if you’re watching on the webcast and there’s a slight delay or interruption, please bear with us, but there will be the opportunity to see the full recording later in the day.

COMMISSIONER SACKVILLE:   Assuming everything works.

MS EASTMAN:   I’ll assume that it will work, Commissioner.


MS EASTMAN:   Ms Mills, so back to your statement.  And I wanted to ask you now about access to doctors and ambulances.  And this is a matter that you deal with at paragraph 69 of your statement.  So this is about an incident that occurred last year; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   And your son had a fall outside his house.  Yes.

MS MILLS:   Yes.

MS EASTMAN:   And his housemates managed to help transfer him to his wheelchair and then to his recliner.  And he seemed to be okay, but his housemates then called you just to do a check.  And what happened when you went to check?

MS MILLS:   I suggested to my son that we see if we could help support him to stand up.  And when we put the footrest of the recliner down, he – and he stood up, he just let out the most incredible scream, and he was, obviously, in a huge amount of pain.  And he just grabbed on to me.  I tried to support him to sit, but then when he sat he seemed to be in pain, as well, and he just wanted to stand up.

MS EASTMAN:   And you were very worried about him, because he had been diagnosed with osteoporosis ‑ ‑ ‑

MS MILLS:   Yes.

MS EASTMAN:   ‑ ‑ ‑ but there hadn’t been a proper confirmation.


MS EASTMAN:   And you were worried whether there might have been some fracture of his spine or some major bone issue; is that right?

MS MILLS:   Yes.

MS EASTMAN:   And ‑ ‑ ‑

MS MILLS:   Because he was behaving as though he was in really extreme pain.

MS EASTMAN:   And you felt that you needed to call an ambulance; is that right?

MS MILLS:   Yes.

MS EASTMAN:   And so you called the ambulance.  And what happened?  You had to wait for a while, but what happened?

MS MILLS:   The ambulance came within 30 minutes, but my son was really in the most distress I’ve ever seen him, actually.  And he lost continence during the wait for the ambulance.  And his housemate and I had to hold him for that period of time.  And then, when the paramedics arrived, the first thing they said is, “Well, you’re going to have to clean him up before we do anything.”  And I questioned whether that was necessary, given that I – I could barely hold him anymore.  He’s about 90 kilos and given his level of distress.  But they insisted that I do that and got me gloves and water.  And what that required was for him to sit and stand multiple times while I cleaned – cleaned him up.

MS EASTMAN:   So this is a very distressing situation, both for you and your son.  And one of the issues that arose was how the paramedics communicated with him.  And you had to show the paramedics what needed to be done; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   So what ended up happening?  How did the paramedics communicate with him and make a decision as to whether to take him to hospital?

MS MILLS:   So – well, the paramedics weren’t – were, obviously, not confident to communicate with him and communicated with us.  And they told us that we would need to lift him on to the bed to get into the ambulance, once that decision was made.  And that was difficult to do, because my son was in such a great state of distress and he was resisting us lifting him from the wheelchair to the ambulance bed.  And I was actually injured in the process, because he grabbed hold of my hair and my neck and pulled me right down and wouldn’t let go.  He’s quite strong.  He certainly wasn’t meaning to hurt me.  He was in unbelievable amount of pain at the time. 

But his housemate and I eventually worked out to lift him on to the bed and he was put into the ambulance.  En route to the hospital I explained that he understands most of what people say, that I can use the visual supports of his communication system – he has an iPad – to clarify any questions that the paramedics had.  And there was a degree of communication happening between the paramedic and my son.  And he was being very responsive.  He was answering questions.  The paramedic was asking him to do things like wiggle his left toe and he was doing that.  He was really showing an understanding of what the paramedic was asking of him.

MS EASTMAN:   And you thought that he might need some immediate pain relief en route to the hospital; is that right?

MS MILLS:   No.  That – that actually didn’t occur to me.  I was fairly traumatised myself by this time, but the paramedic actually raised it and said when we were almost at the hospital, “Normally, we would give a person pain relief under these circumstances, but I can see that you believe that your son can understand and communicate, but I’m not convinced that he can.  So I don’t believe he’s capable of giving consent to have pain relief in this instance.”

MS EASTMAN:   So you say in paragraph 73 that the decision to deny him pain relief was made without consultation with your son or with yourself; is that right?

MS MILLS:   That’s correct.

MS EASTMAN:   Okay.  So once you reach the hospital there needed to be an X-ray; is that right?

MS MILLS:   Yes.

MS EASTMAN:   And the X-ray didn’t show up any fractures.


MS EASTMAN:   And so what was the advice in terms of ongoing treatment when the X-rays didn’t identify any particular problem?  What happened then?

MS MILLS:   So the doctor treating him said, “Under normal circumstances, we would ask somebody to take four or five steps to confirm that there wasn’t anything wrong, but, given he has a disability we won’t do that, and I think it’s safe to send him home.”

MS EASTMAN:   And he did go home, but you say this was a mistake; is that right?

MS MILLS:   Yes.  It was a mistake.

MS EASTMAN:   And is this an example where you shouldn’t have agreed – I think you say this in your statement:

I shouldn’t have agreed to this course of action, because I do know better, but it was 3 am, it had been a very stressful day –

And you felt you weren’t thinking too clearly.

MS MILLS:   That’s correct.

MS EASTMAN:   So, as you say, this is not to justify your failure to protect your son ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ but, rather, to say we need medical professionals to receive the necessary training and supports to help us make safe and objective decisions when under duress.  So this comes back to what we were talking about earlier; is that right?

MS MILLS:   That’s correct.  And I believe to err on the side of caution, especially – I think for anybody, but, especially when someone can’t speak to communicate to tell us what’s going on, we should be very careful.  So there was further testing that could have been done, which was an ultrasound.  And we should have done that before sending him home.

MS EASTMAN:   And so he went home.  He’s still in pain for a further 24 hours.  Then back to the hospital with the ultrasound.  And that disclosed a fractured tibia.

MS MILLS:   Yes.

MS EASTMAN:   The outcome was two weeks’ hospitalisation, followed by five months recuperation.  And it took him a very long time to be able to regain his ability to walk; is that right?

MS MILLS:   That’s correct.

MS EASTMAN:   So you say that you had the chance to reflect with the treating doctor “when we met accidentally in a hospital café”, and he was both empathetic and apologetic as to how things had gone when you explained what happened.  And in this discussion did you say, “We both made a mistake.”

MS MILLS:   Yes.

MS EASTMAN:   How did that conversation go?  And what were the learnings, both for you and for the practitioner, based on what the practitioner said to you.  But what were the learnings coming out of that incident?

MS MILLS:   I think for me to understand that that practitioner really was trying to do their best to make the best decision and just had not had any preparation to think about what good principles are or best practice is to support someone with a disability with complex needs who can’t, you know, necessarily tell us exactly what’s going on for them.  And for me – for me, the learning was that, you know, yet again, under duress I’m – I struggle to be a good advocate for him. 

I would like to say that that particular hospital experience was, overall, very positive.  And that particular hospital, compared to the other experiences that we’ve had, has an excellent culture.  And I found that, generally, they were very welcoming and wanted to hear about people with disability, hear our views, hear if things weren’t going right.  And that was – that was fantastic.  I think if every hospital could have that kind of culture, that would be a big step forward.

MS EASTMAN:   And you also think that it would be helpful for those who practise as paramedics to also have similar training and awareness and develop a culture, so that in that state of very acute distress, when an ambulance is called, that there is a way of managing that situation to provide care and a safe environment for people with intellectual disability; is that right?

MS MILLS:   Yes, that’s correct.  And also to be aware of communication resources, which can benefit not just people with disability but a whole range of people.  So people for whom English is a second language, someone who is just in great distress and is struggling to communicate or process information can benefit from some basic visual supports that could be in every ambulance and used to good effect.

MS EASTMAN:   Right.  And you say in paragraph 81 that:

Delays in treatment for medically vulnerable people with disability result in preventable suffering, more intense illness and death.  And, therefore, we should be erring on the side of caution in seeking prompt attention when it’s suspected that a vulnerable person might be unwell.

Is that right?

MS MILLS:   Yes, that’s right.

MS EASTMAN:   Okay.  Now, I want to jump to another part of your statement.  And if we can move to your observation of experiences of others.  And you give a number of examples in your statement.  And I want to just focus, perhaps, on one of the examples and then briefly touch on the other one.  So this is, Commissioners, starting at paragraph 86 of the statement.  And the particular example that you wanted to talk about was the example of the person who we describe as “A”.  And this is at paragraph 91 of the statement.  So this is a distressing experience for a man in his 40s.  And your son had his own small business for a few years, hiring particular Toughbooks to other people who experienced challenging behaviours, and this was part of his business assisting others to communicate.  And you supported your son in this work.  And through this work, the person who you describe as ‘A’ came to your attention.  What would you like to tell the Royal Commission about ‘A’s’ experience?

MS MILLS:   So I was told that ‘A’ had had a stroke in his teen years, and he had lost the ability to speak.  And someone working with the family had suggested that we go and see them.  So we had Panasonic Toughbooks, which are military grade laptops.  You will see them in the movies in really robust situations.  So they’re pretty much unbreakable.  So great for people who experience challenging behaviour.  And it’s a touchscreen device, well before that became mainstream technology.  So we went to see him and showed him a Toughbook with some communication pages on it, and he was able to use it straight away.  And everyone, including his family, were pleasantly surprised to see that he had actually maintained a lot more ability and cognition than had been assumed, because he couldn’t speak.

MS EASTMAN:   All right.  But during the period when you were working with ‘A’, you had an interaction with a senior speech pathologist at the treating hospital.  And she asked to speak to you outside.  And so you deal with this at paragraph 93.

MS MILLS:   Yes.

MS EASTMAN:   She says – you say that she chastised you for giving ‘Mr A’ and his family hope that he could communicate, and that somewhat surprised you; is that right?

MS MILLS:   That’s correct.

MS EASTMAN:   And she said this to you:

We are just waiting for him to die.  He could have another stroke at any time.  So what’s the point of what you’re doing?

And she seemed quite angry when she said this to you, and your response was that:

He’s 42 years old.  People have been waiting for ‘A’ to die for a very long time since he had a first stroke as a teenager, but he’s still here.

And so what – how did this conversation end up, and what was the outcome of this conversation?

MS MILLS:   Well, I said that I felt that the less time a person had, the more important it was that they were able to be supported to communicate.  And, in fact, he did live for some time after this time, and we supported him to get funding for a robust communication system, so he ended up getting a Dynavox.  He actually maintained the ability to read.  And so he was able to communicate from that time onwards, which, of course, is incredibly important, yes.

MS EASTMAN:   The other person you refer to is the person who you identify as ‘C’.

MS MILLS:   Yes.

MS EASTMAN:   And this is somebody who you have been working with over the last few months.  It’s a very complex case.  And can we summarise it this way:  that ‘C’ was presenting with screaming, but then laughing.  And so support workers just assumed that this was a behavioural issue rather than understanding that perhaps the screaming had something to do with an attempt to communicate as to how this person was travelling and, in particular, acute pain and illness.  So the upshot, in terms of ‘A’ and the support that you’ve given, is that he has had to have some significant health intervention, but it’s really a case about starvation, isn’t it?

MS MILLS:   That’s correct.

MS EASTMAN:   What would you like to tell the Royal Commission about how this came about and how this man’s digestive problems and range of other problems, in terms of scoliosis, actually resulted in a diagnosis that the man was severely dehydrated and starving?

MS MILLS:   So he was originally on the list to have scoliosis surgery, but my understanding is that there’s quite a long wait list for that type of surgery, and in the meantime his scoliosis was so severe that it had compromised the positioning and function of his internal organs.  So some surgery was done to address issues related to constipation, initially, actually, but then that had an impact on his capacity to eat enough food.  And he had been struggling to eat enough food for almost 12 months when the most – the hospitalisation happened last year.  I co-facilitate a peer group for adults who have complex communication needs and he’s a member of that group.  And he came to group one day and my two colleagues and I were very concerned because he was very sleepy, he slept through the session.  His support worker said he had actually been sleeping for most of the day for a couple of weeks and that he had not been eating, so we called his family and said, “We think he needs to go to hospital”.  He had seen a GP but that recommendation hadn’t been made.

So he presented at hospital.  And I was called in on the third day that he was there, and I became quite concerned because we had actually set up a system with him to monitor his food and drink intake, which is really important for people with high support needs.  Often this doesn’t get done and it gets missed that someone’s maybe drinking a lot more or a lot less, or eating a lot more or a lot less.  And these are indicators of unwellness we can pick up.  So when I looked at the records for that day, it was late afternoon, he had had only 165 mils of fluid and barely enough food.  And the hospital wasn’t monitoring what he was eating either and they had not done anything about getting nutrients into him, even though he had not been eating for two and a-half weeks by that time.

MS EASTMAN:   So these are some of the examples that you’ve come across in your advocacy work but also through microboards; is that right?

MS MILLS:   That’s right.

MS EASTMAN:   In the statement you identify a few other specific issues that have come to your attention.  This is starting at paragraph 129.  One of them you identify is a lack of physical access and equipment.  And this is very basic equipment that will make a significant difference to people with both intellectual disability and perhaps physical disability.

MS MILLS:   Yes, yes.

MS EASTMAN:   One example that you give is that you’re aware of a woman who uses a wheelchair who lives in a regional town, and she has never had a pap smear because there’s no hoist in the doctor’s surgery.

MS MILLS:   That’s correct.

MS EASTMAN:   You know of other examples where people have had extended stays in teaching hospitals, but they haven’t been able to shower or bathe during the extended stay because there hasn’t been any shower beds or appropriate equipment.

MS MILLS:   That’s correct.

MS EASTMAN:   So you think that’s one thing that needs to be examined; is that right?

MS MILLS:   That’s right.  And I know people who use wheelchairs who have to go to emergency department for basic care because there’s not a hoist at their doctor, and we’ve had a huge reduction in home visits in Western Australia from GPs.

MS EASTMAN:   That’s the next issue that you identify, is the decline in home visits by GPs.  So that then means that, in terms of sourcing adequate treatments, that sometimes the local clinics won’t be suitable, but you find then people using hospital departments to access basic care;  is that right?

MS MILLS:   That’s correct.  I can’t emphasise this one sufficiently, especially on behalf of the group of families who have loved ones who experience challenging behaviour who simply cannot get people to the doctor or to the emergency department and who just miss out entirely on health care.  It’s really, really important.  And I’ve had instances with my son as well where we’ve not been able to get medical care because we can’t get a GP to come to the home.  The locum services run from 6 pm.  So if you need a doctor at 9 am, medical attention, it’s impossible to get.  And on top of that, locum services are not suitable for people with complex disability.  They need somebody who has some expertise, that knows them well, and can make really well-informed decisions with them about their health care.

MS EASTMAN:   All right.  The next is a lack of understanding and education about people with complex communication needs.  And you say at paragraph 134 of your statement that between 50 to 90 per cent of people with intellectual disability are estimated to have or experience significant communication difficulties.  And they may also experience problems with memory, attention, and information processing.  So one of the issues of concern is how do you break down the communication barriers and what training do medical staff need, but also what equipment can be used, for example, using alternative communication methods in a medical setting.  So can I ask you about what you say in paragraph 137.  So we’re talking about communication boards.  That’s not microboards, but what are the medical communication boards?

MS MILLS:   There’s a substantial amount of evidence that for the majority of people with intellectual disability, visual supports help them to process information.  So one of the reasons for that is that if you think about words, words come and go so quickly, don’t they?  You would have all had times when it’s difficult to hang on to words as they’re spoken.  Visuals don’t vanish.  They stay there in front of you.  And so what we call low-tech communication aids, which is paper-based, are very effective ways of communicating with people with disability.  And now that we have iPads, there’s a wide range of apps that we can use to communicate effectively with people.  So these kinds of things really help.  And they really help people to engage in medical processes as well a lot more easily when they can have help to understand what’s happening, why it’s happening and, importantly, to have a say in how things are done.

MS EASTMAN:   The next is understanding and accommodating challenging behaviour, and that you deal with in the statement at paragraph 138 to 140.  And I think we’ve touched upon some of those issues as we’ve gone along this morning.  Can I ask about the next one, which is confusion and despair for families who don’t know how to navigate medical barriers, make well-informed decisions, know who to trust, and know when to persist when getting help.  And you say in the statement that families often struggle to process a disability diagnosis, and the complexity that that might bring, let alone the additional challenges in navigating after a diagnosis as to what medical needs the person will need to access over the course of their life.  How do we support families to address those concerns?

MS MILLS:   So, I guess, a process of planning and having an advocate who’s well informed around medical practice would be the ideal.  You know, in reality, the medical systems are struggling to navigate people with high and complex support needs.  And if we look at the case of ‘C’ in my statement, that’s a really complex situation with multiple health needs coexisting.  And that family and most families are not in a position to be able to navigate that and to make well-informed decisions about the best outcome for their family member.  So our sense is that having a well-informed advocate to walk alongside families to help to explain to them the medical system and what’s happening, to make sure that they understand the medical issues and the treatments on the table, to help them to do further investigation, which is often required, and to guide them towards a good decision, would be a wonderful thing for the group of families that I know.

MS EASTMAN:   All right.  Then I want to turn to some of the suggestions that you make in your statement.  So this starts at page 50, paragraph 143.  And some of them we might go into in a little bit more detail than others.  The first was that medical professionals should always err on the side of caution, especially when people have complex needs, including complex communication needs.  And I think we’ve touched upon that earlier in terms of the examples that you’ve given of your son’s experience in relation to the burst appendix, to the X-rays in relation to his feet and to the events that occurred last year.

MS MILLS:   That’s correct.

MS EASTMAN:   You want to see some education and guidelines about the use of restraints.  And I want to talk to you again a little bit more – just before the break we touched upon the tension that might arise in terms of how to use and when to use any type of restraint.  So can I ask you just to give the Royal Commission the benefit of what you say in paragraph 144 and 145 as to what should we be thinking about in the area of education and guidelines.

MS MILLS:   Ideally, if there were more robust planning for medical engagement and treatments, especially for people who can experience a lot of anxiety or challenging behaviour, then we could work with individuals to prepare for those scenarios.  And people can, at times, make decisions about whether restraints are used.  So, ideally, people should be giving consent to a restraint being used and having some choice around when and how a restraint is used.  And that would be the ideal scenario. 

Of course, there are emergency situations which arise where that cannot happen.  And in that case there needs to be some guidelines in place for medical teams and staff around how decisions can be made around the use of restrictive practices, in particular to keep a person safe, but also to be aware that restraint doesn’t have to mean that someone’s being held down by four people and experiencing that as an assault, which is what happens.  It can be done in ways that are more collaborative with the individual and more gentle, when people have adequate training and preparation for those scenarios.

MS EASTMAN:   The next suggestion, which we haven’t touched on today, is robust medication checks for people who are vulnerable and who are in hospital settings.  And you have become aware, through Microboards Australia, that there are often errors that occur in relation to the administration of medications in hospital and the ability to know and understand a medication regime and to be able to speak up and question whether or not the medication regime is being administered properly is something that should be examined.  What can you tell the Royal Commission about the way in which families can be better educated, but also to be able to work with hospital staff to address those issues and avoid mishaps?

MS MILLS:   I think it’s really important for families to be educated that this is an issue, because it’s certainly been my experience in most of my son’s stays in hospital that there’s some kind of medication error.  And a number of families have reported this to us, as well.  I think that part of the issue is just how busy hospitals can get.  And when someone who is complex presents who is on a number of different medications, they’re not always – sometimes they’re unusual medications, they’re not always kept in stock in the hospital pharmacy.  I’ve had instances where one of my son’s medications has been left out when his meds have been brought and they’re trying to source it and, with staff changeovers, it just doesn’t really happen. 

So I think that we need some kinds of systems in place, particularly when people have complex needs, to make sure that the medications given in hospital are correct, because I’m not sure if Commissioners are aware, you’re not allowed to bring your own medication from home to hospital.  You have to use the hospital medication.  So we need to make sure that it’s correct, that it’s given at the correct time.  So sometimes staff are very busy and the seizure medication gets given three hours later, because there’s things happening. 

I’m not sure what the answers to these things are.  I think that hospitals need some support to identify that this happens and to find resolutions.  But I do suspect that we need additional staff in place when there’s someone with very complex needs admitted to hospital.  And whilst that might be an initial increase in cost, I believe we would save way more than that initial cost in terms of not having to pick up after accidents or mistakes being made.

MS EASTMAN:   Next you deal with medical staff need to know that people with disability do feel pain, even though they might express it in atypical ways.  And we’ve touched on that during the course of your statement.  Then you also identify the importance of diagnostic protocols and assessment guidelines being established to guide medical professionals.  So, again, I think we’ve touched on some of that as we’ve gone through.  And related to that is that medical systems explore options to overcome barriers to diagnostic assessment and treatment as a result of complex needs or behaviour which can be seen as challenging, and that there should be some quite specific training to deal with that aspect.  And I think we’ve dealt with that, as well, as we’ve gone through.

MS MILLS:   That’s right.

MS EASTMAN:   The next, which is just at paragraph 160, is that people with complex needs should have somebody with them at all times who knows them well or properly trained communication partners to assist or a medical advocate.  And I think we’ve talked about that in the context of sometimes as parents making those decisions, to have somebody with you.  So we’ve talked about – I think we’ve addressed an aspect of that.  Is there anything else you wanted to add to that?

MS MILLS:   Just that those of us who have had experience in hospital there’s no way that we would leave our loved ones in hospital unsupported, because we don’t experience hospital settings as safe places, and that we have concerns for people who have high support needs who do not have family members, and that we’re aware that at times people who cannot speak or who have high support needs are in hospital and that they are allocated a support worker from the hospital who doesn’t necessarily know them very well.  And we believe those people to be highly vulnerable and at risk, because there actually isn’t anybody there who understands their communication or is able to monitor that their medication is correct, that their support needs are met in the way that they need to be met.  And I cannot reinforce how at risk I believe that these group of people are.

MS EASTMAN:   Next, you think that for primary health care there should be, on a routine basis, adequate access to primary health care.  And the one aspect I wanted to ask you about this, which we haven’t touched on in the course of the hearing thus far, but a very important issue, is you say at paragraph 162 is that sexual and reproductive health is an area that is often overlooked.  And this raises some issues in terms of the involvement with families and family members being advocates when it comes to matters of sexual and reproductive health.  Do you want to talk about that, in terms of what issues have arisen in the context of your work with microboards?

MS MILLS:   I think generally what we see, especially with people who can’t use words to communicate, is that they are not seen as adults or young adults.  They’re not seen as sexual beings.  They’re not seen as people who have the capacity to have romantic or sexual relationships.  And this is all, I believe, at an unconscious level, but it’s played out in schools where these students don’t receive sexual education, there’s not sexual language put on to their communication systems, etcetera.  And what that means is that evaluation of sexual health is not undertaken.  So we hear lots of stories of women who don’t get pap smears or they don’t, you know, have breast examinations, there’s not an examination of testicular health or looking for lumps or cancers or any of that kind of thing happening at all.

MS EASTMAN:   You say medical professionals should receive education on contemporary thinking about disability.  And part of this is moving from what the Royal Commission has heard as a medical model to a social model.  But I think you make this point very clearly, that we would not tolerate racism and other socially-ignorant comments made by medical professionals.  Why should there be any difference because a person lives with disability?

MS MILLS:   That’s correct.  So assumptions are made about the kind of life my son has.  And I’m not being critical of any particular model of support at all here, but generally I get asked about him, “Which group home is he in?” and, “What day program does he go to?”  And he understands what people are saying and he has his own home and he does the things that he wants to do in the course of the day, but he’s spoken about in front of him as though he isn’t actually a person that has a life like any other person. 

And I see what happens to him is his self-esteem is battered every time that that happens, every time that he’s treated as someone that obviously doesn’t have any choice in his life, obviously wouldn’t ever have a girlfriend or friends, or any of the other things that other people enjoy.  And I think that at an unconscious level it’s highly likely that this impacts some of the poor medical decisions that are made, that people with disability – and the more complex your disability is the more of a burden that you’re seen as being, whereas that’s not how things are now.  You know, my son is awesome.  There’s a whole bunch of people that love him.  He contributes hugely to his community.  And we need him to be seen as that person in medical settings.  And it’s just as important that he’s kept alive as any other person.

MS EASTMAN:   There are some other suggestions and recommendations that you make in the statement.  And I think that we’ve touched on them.  But I think finishing on your description of your son and his contribution that he has to make is probably a good spot to stop.  And to thank you very much for your evidence to the Royal Commission.

MS MILLS:   Thanks, Kate.

COMMISSIONER SACKVILLE:   And I would like to add our thanks to you for your very detailed statement.  Sometimes if there’s a statement 67 pages long, you might think, “Well, with a bit more time it could have been shorter.”  But I don’t think that’s true of this one.  Every page has been helpful, including the footnotes at the end.

MS MILLS:   Thank you.

COMMISSIONER SACKVILLE:   Thank you very much for that detailed work and for your evidence today.  It has been extraordinarily helpful.  Thank you.

MS MILLS:   Thanks, Commissioner.

<THE WITNESS WITHDREW                                                                                                                    [11.56 am]

MS EASTMAN:   Commissioners, that will be formally tendered and marked exhibit 4.19.


MS EASTMAN:   And Mr Simpson is our next witness, but it might be convenient just to have another 10 minutes break.  We won’t take the luncheon break now, but, say, 10 to 15 minutes.  I would like to check on how we’re travelling with the webcast, if there’s any further problems.

COMMISSIONER SACKVILLE:   Well, we won’t eat until you let us know – you give us permission.

MS EASTMAN:   I don’t think even I have control over that.  Thank you.

COMMISSIONER SACKVILLE:   All right.  We will adjourn for 10 minutes.

ADJOURNED                                                                                                                    [11.56 am]

RESUMED                                                                                                                    [12.12 pm]


MS EASTMAN:   If the Commissioners please, the next witness is Jim Simpson.

COMMISSIONER SACKVILLE:   Mr Simpson, if you would be good enough to come forward.  Please take the oath or affirmation as you wish.

MR SIMPSON:   Thank you.

<JAMES SIMPSON, AFFIRMED                                                                                                                    [12.12 pm]




COMMISSIONER SACKVILLE:   Thank you.  And Ms Eastman will now ask you questions.

MS EASTMAN:   Commissioners, you will find a copy of Mr Simpson’s statement in part B of the tender bundle behind tab 12 and a copy of Mr Simpson’s CV is behind tab 13.  And this will become exhibit 4.20.  So 4.20.

EXHIBIT #4.20 STATEMENT OF JAMES SIMPSON DATED 12/02/2020 (STAT.0055.0001.0001)


MS EASTMAN:   So Mr Simpson, your name is James Simpson but you’re known as Jim Simpson.

MR SIMPSON:   That’s correct.

MS EASTMAN:   And you are a senior advocate with the New South Wales Council for Intellectual Disability?


MS EASTMAN:   And you’ve made a statement dated 12 February this year.

MR SIMPSON:   I have.

MS EASTMAN:   You’ve read the statement.


MS EASTMAN:   And its contents are true and correct.


MS EASTMAN:   Can we start with a little bit about you.  Many people watching this broadcast will know you or know of you.  You have been a senior advocate with the New South Wales Council for Intellectual Disability since 2001.

MR SIMPSON:   That’s correct.

MS EASTMAN:   And your professional qualifications are in law.


MS EASTMAN:   And you’ve spent a bit of time practising as a solicitor; is that right?

MR SIMPSON:   I did.

MS EASTMAN:   And in 1986 you became the first principal solicitor for the Intellectual Disability Rights Service in Sydney.

MR SIMPSON:   Correct.

MS EASTMAN:   Just pausing there.  IDRS, as it’s fondly called.


MS EASTMAN:   Can you tell the Royal Commissioners a little bit about the nature of that service and the legal advice and assistance provided to clients of that service?

MR SIMPSON:   Certainly.  We established IDRS at a time when there was a vacuum, more or less, in relation to recognition of the rights of people with intellectual disability and steps being taken to address those problems.  The role of the service has evolved over time.  Early on, we put a very high focus on community education to people with intellectual disability, to their families, to service providers, to raise the whole profile of rights, which was a fairly foreign concept to them. 

We also did a lot of advice and referral and advocacy for systemic change.  The role of the service has evolved over time, for good reasons, and now it does more legal case work, as well as the advice and referrals, still some community education.  It has a really big role in supporting people with intellectual disability and the interactions with the justice system, including supporting people from the criminal justice system into the NDIS and much better supported lives.

MS EASTMAN:   And you’ve also served for a time as a senior member of the Guardianship Division of what is now known as the New South Wales Civil and Administrative Tribunal but formerly the Guardianship Tribunal.

MR SIMPSON:   Yes, that’s for about – since about 1990.

MS EASTMAN:   Are you still a member?


MS EASTMAN:   And you’ve also been a legal member of the Mental Health Review Tribunal.

MR SIMPSON:   Yes, that was for many years.

MS EASTMAN:   And you have been acknowledged for your advocacy work and you’ve received a number of awards, which you set out at paragraph 5 of your statement.


MS EASTMAN:   Now, I want to ask you a little bit about the New South Wales Council for Intellectual Disability.  Last week, when the Royal Commission opened its public hearing, we heard from Justine O’Neill and Jack Kelly.  And they told us a little bit about the work of the New South Wales Council for Intellectual Disability.  But in your statement you talk about the approach to advocacy and the importance of the work that you do reflecting the views, wishes of people with intellectual disability.  So I want to just ask you a little bit about what’s set out in paragraph 10 of your statement, because you say that the views that you:

Express in this statement are informed by the experiences that people with intellectual disability, their families and other supporters have relayed to the council. 

It is also based on research evidence and broad consultation; is that right?

MR SIMPSON:   Correct, yes.

MS EASTMAN:   So can we just explore a little bit about the nature of the advocacy role and how the Council for Intellectual Disability works?

MR SIMPSON:   Sure.  As I think has already been explained, we’ve evolved from being an organisation which was a federation of non-government service providers through to one where the majority of our board has to be people with intellectual disability with support arrangements, but we’ve also got board members who are family members and other professionals, advocates in the field.

We – our approach to our work is to very much be informed by those things that you mentioned, that the experiences that people with intellectual disability tell us about, the experiences that their family members tell us about are absolutely key to our being and our advocacy.  But the – complementing that with working with professionals in the field and being able to rely on the research base which has gradually developed in relation to health care, for example, provides an invaluable combination to then inform the strengths and strategies for our advocacy.

MS EASTMAN:   And you’ve been present during the public hearing over the last week or so.

MR SIMPSON:   Virtually all of it, yes.

MS EASTMAN:   And one question that you may have heard me ask some people, and that is that it is important for the Royal Commission to hear directly from people with intellectual disability and cognitive disability.  And we’ve talked about how we can best do that.  Can I ask you at this point:  what should the Royal Commission be thinking about or looking to ensure that we can also hear directly from people with intellectual disability, and how do we balance that with the role of organisations like the Council in speaking for people with disability but informed by people with disability?

MR SIMPSON:   Yes.  I think that direct voice of people with intellectual disability is vital.  We seek to be a role model for that in our work.  And so, for example, if we go and see a government Minister, the first speaker almost always is a person with intellectual disability.  In terms of the Royal Commission, you know, I think absolutely not just relying on, you know, the hopefully reliable filter of someone like me, but hearing directly from people with intellectual disability, as you have done over the last days, is just a – an incredibly valuable first-hand informant for the Commissioners, and the kind of environment that’s being created in this hearing room, I think, has been really helpful to maximise that.  The Commission can reach out to people with intellectual disability through organisations like ours.  We often know people, individuals who would be keen and able to give evidence, but hopefully there will be other people who will come forward as well if the Royal Commission is promoting itself well.

MS EASTMAN:   All right.  We may come back to that.


MS EASTMAN:   The focus of your evidence today is on health care.  And there are a few issues that we need to explore.  You’re going to tell us a little bit about the barriers to health care, but also we’re going to look at some of the initiatives and policies that have been put in place over periods of time, and examine the effectiveness of those policies and practices and the extent to which it has made a difference.  I think you say in your statement, and mention was made in the opening address, that the premise is that the current system is a national disgrace; is that right?

MR SIMPSON:   Absolutely.

MS EASTMAN:   And you’ve formed that view not just to be alarmist or sensational, but based on the depth of your experience over many decades in looking at different programs, policies and initiatives that have come and gone over the time;  is that right?

MR SIMPSON:   Indeed.  I mean, the research base has gradually become stronger, which is incredibly valuable.  But, you know, for at least since the mid-1990s there has been a strong research base showing lack of adequate diagnosis of health conditions in people with intellectual disability.  For example, overuse of psychotropic medication in institutions, people dying far too early.  You know, it’s really important that I acknowledge that over time, most particularly in very recent years, we have seen some good steps forward in New South Wales, and I’m – I think and hope we’re on the cusp of some really good steps forward nationally, which, you know, we will talk about later.  But the fact that it has taken so long to get to that point and the fact that there is just so much more that needs to happen, if we are going to address those preventable deaths, has been and remains a national disgrace.

COMMISSIONER SACKVILLE:   Why has it taken so long and what, in your experience, are the obstacles to achieving the change that you and others have been advocating for for so long?

MR SIMPSON:   That’s a really big question, Commissioner, but I think – and I’ve been reflecting on this over the last week.  I think the most fundamental issue is one of values and attitudes, that there just has been a perception – which, you know, most certainly has gradually improved – but there most certainly has been a perception that these are other people out of sight, out of mind, segregated away from society, a view that people with intellectual disability are, you know, lesser people with lesser rights. 

And, I mean, that’s illustrated in, you know, again just reflecting in recent days, I dug out this discussion paper that the National Health and Medical Research Council put out in 1988 on the ethics of limiting life sustaining treatment, and it talks about low birth rate infants, and it says, summarising, in regard to extremely low birth rate infants (a) a few survivors will be entirely normal but they cannot be identified early;  (b) aggressive treatment of all such infants is very expensive;  (c) the cost of neonatal intensive care is measured not only in financial terms but also in serious stressors on parents and carers.  So great respect that I have – that I have for parents and carers, the notion that the stress for parents and carers is whether – relevant to whether a child lives or dies I find abhorrent.  And the final line, I think, is very indicative of the attitudes behind some who wrote this paper.  The dilemma is whether all such infants should receive all possible life sustaining treatment for the sake of a few intact survivors.  That, to me, from an august body, like the National Medical Health and Research Council, is just illustrative of where we have come from in relation to values and attitudes and the perception that these people just don’t matter like other people.

COMMISSIONER SACKVILLE:   We’ve heard a lot of evidence about that over the last six or seven days ‑ ‑ ‑


COMMISSIONER SACKVILLE:   ‑ ‑ ‑ and dating from more recent times than 1988.

MR SIMPSON:   Absolutely.  That’s – you know, I think things have improved, but the evidence we have shown – we’ve heard in the last week and so much of the other recent evidence just confirms that there is still a very major problem there.

COMMISSIONER SACKVILLE:   I will have to ask Ms Eastman to forgive me again, because I’m going to ask a couple more questions.  Part of the function of this Royal Commission, as with other important Royal Commissions, like the one dealing with Institutional Responses to Child Sexual Abuse, is to change the very public attitudes and perceptions to which you refer.


COMMISSIONER SACKVILLE:   How can we do a better job of that?

MR SIMPSON:   I think there are some community trends which are already underway.  I think the gradual closure of institutions, the Every Australian Counts campaign, which in turn led to the National Disability Insurance Scheme, and the – and, you know, a comparatively high media presence there has then been in relation to both the – both the good things that have been achieved through the NDIS and the problems.  I think that’s all raising the profile of the rights of people with disability.  But that’s – there’s still so much to do. 

I think in the context in which we are dealing here, certainly something we advocate is universal values-based training for all health professionals.  We need to sort of look into very carefully, you know, what works there.  What I am very confident works is if that universal values-based training has people with intellectual disability themselves at the very forefront of the education, something that we do in a lot of our work.  And, you know, I think there is no substitute for anybody getting to know a person with intellectual disability seeing them in a – performing a very positive and valued role.  And so that’s – I think that’s part of the answer.  It’s a very big question again.

COMMISSIONER SACKVILLE:   That’s right.  Thank you.

MS EASTMAN:   Just dealing with a paper that you’ve provided us this morning – this is the NH and MRC council.  This might be reflective of how there has perhaps been a change in approach.  The questions posed in the paper:

Who should decide for newborns?  While doctors have traditionally made life and death treatment decisions for newborns with no clear obligation for consultation, there is an increasing community expectation that parents should have a central role in the process.

And then the paper goes on to talk about what happens with conflicts between what parents think and what the medical practitioner thinks and who should decide the best interest for the infant.  So if we say, perhaps, that this might be reflective of both medical and community attitudes in 1988, there’s certainly been some progress, but some of our witnesses have talked about this sense of unconscious bias.


MS EASTMAN:   And do you think some of these views and old-fashioned values might still be deep seated in people’s minds?

MR SIMPSON:   Indeed.

MS EASTMAN:   That even though they may not consciously bring these values to their decision-making, they might still have some resonance, even though this is now many, many years ago?

MR SIMPSON:   Absolutely.  I think it’s still a major issue.  I think there would still be many, many – many medical practitioners who would think that for a lot of people with intellectual disability, it would be a blessed release to – for the person and for their family for them to die.  That’s, you know, the hangover we still have from a terrible history.  And, you know, where families are involved in decisions, especially early in life, a really major question for me would be whether the families are getting the balanced information that they need to be able to make those decisions, or whether – and I think we’ve – I think the Commissioners have heard some evidence about this, that – about whether families are getting balanced information about the very positive lives that people with disability lead, as opposed to the emphasis on the medical challenges that there might be.

MS EASTMAN:   We’ll make a copy of that paper available to the parties with leave, and we’ll include that in the exhibits.  But can I ask you this, just touching on values and attitudes.  It is difficult, is it not, to change values and attitudes?


MS EASTMAN:   It’s not something that can be done overnight.


MS EASTMAN:   And that there are many components that need to be considered if you want to take a values approach or an attitudinal approach to being able to change – to change thought.

MR SIMPSON:   Correct.

MS EASTMAN:   To change patterns, to change behaviour, and to make a change in attitude.

MR SIMPSON:   Correct.  It’s probably a good time – it’s probably sensible I mention that our organisation has just received a large grant from the NDIS Information Linkage and Capacity Building Program to put together a universal training module online and face-to-face in relation to the real core issues, like values, attitudes, communication with people with disability, reasonable adjustments.  And one of the things that we will really have to grapple with there is, you know, looking into the research and getting the best advice in relation to, you know, what does give you the best shot of changing values and attitudes.  I’ll be amazed if it doesn’t include having people with intellectual disability at the centre of it, as I’ve mentioned before.

MS EASTMAN:   Okay.  Let’s go to barriers to health care, which you set out in paragraph 11 of your statement.  And you identify there, based on your experience over a long period of time, 16 particular barriers.  And, Commissioners, I’m not going to take Mr Simpson through each of the barriers.  And I think it’s fair to say some of the barriers that you’ve identified have been identified by other witnesses giving evidence during the course of this public hearing.  But, Mr Simpson, were there particular matters that you thought we haven’t touched on yet that you wanted to address?  And I think you’ve talked about values and attitudes.  And that was 11.7.

MR SIMPSON:   Indeed.

MS EASTMAN:   But did you want to talk about any other particular matters arising out of those barriers?

MR SIMPSON:   Look, just in relation to that context of values and attitudes.  And, more broadly, I want to emphasise the evidence yesterday in relation to the double whammy, as Narelle Reynolds talked about in relation to if you’ve got both an indigenous status and disability.  It can be double barriers in terms of values and other things.

The other thing that I just want to emphasise – and this will come up further in my statement – is the – that most – at least most of the evidence to date has been in relation to the problems in the health system.  I, really, just want to emphasise that the disability support system also has a major role here in relation to supporting people to get the health care that they need, identifying early signs of health problems, promoting healthy lifestyles, supporting communication with the health professionals, supporting action on the health care professionals’ advice.  And – and that’s – you know, we are nowhere near there in relation to the quality of that.  And, as I think we’ll touch on later, I have some fears in relation to whether we’re going backwards in the NDIS environment.

MS EASTMAN:   All right.  And you say in your statement that research has been very important, so collecting the evidence, analysing the data, that the research has helped have a better understanding about the scope and the nature of issues.  So in 2001 you refer to there already being substantial research that showed health inequalities experienced by people with intellectual disability.  And – so that’s almost 20 years ago that there was evidence of 40 per cent of health conditions being undiagnosed.


MS EASTMAN:   And people were dying much earlier than the general population.


MS EASTMAN:   So when we’ve looked at some of the statistics – and Professor Trollor dealt with this towards – in his evidence last week – is that these should not come as a surprise.  They’ve been known for now almost two decades; is that right?

MR SIMPSON:   Absolutely.  And, you know, one of the key things I do in my advocacy in the 20 minutes you might get with the Health Minister or whoever is to highlight sort of key figures like these.

MS EASTMAN:   How important is having a sound, accurate and reliable research base to both advocacy for people with intellectual disability, but also the development of appropriate policies and practices?

MR SIMPSON:   Absolutely invaluable.  I mean, from the point of view of advocacy, you know, powerful research evidence gets publicity, which gets matters into the public arena, which both serves a community education component and also makes politicians more likely to be sitting up and listening.  It also – research also, you know, overcomes a common problem that we face as advocates of being accused of just giving anecdotal evidence.  And it informs – you know, for us as advocates, it informs the development of reform proposals that we think we can sell to governments and bureaucrats and, in turn, assist them to develop business cases to get things funded.  So that research base is absolutely invaluable.

MS EASTMAN:   What’s the current situation in relation to the research base and who is the – who are the leaders in the field, from your perspective, in these areas of research?

MR SIMPSON:   At the risk of not mentioning people who I respect, I mean, Professor Trollor is undoubtedly the national leader in relation to research in relation to the health inequalities and needs of people with intellectual disability.  Professor Lennox, who you will hear from next, has done so much valuable research.  You know, there’s a range of other people around Australia doing important work, as well.  But, certainly, it’s been Professor Trollor’s recent research that has driven – that has incredibly and valuably informed our advocacy in getting attention from politicians and bureaucrats.

MS EASTMAN:   All right.  Now, from your work, you say quite early on there are two basic strands to reform that is needed in the health system.  The first is the whole mainstream health system, and that it needs to lift its capacity to respond appropriately to people with intellectual disability.


MS EASTMAN:   And the second is that there is a need for a network of specialised intellectual disability health services to back up the mainstream.  So you’re saying, aren’t you, that in terms of reform you’re not advocating for an entirely separate health scheme for people with intellectual disability, that the starting point is that what we might perhaps conveniently call the mainstream, that that is the system, but within that system there needs to be a better recognition for specialist health care for people with intellectual disability, in the same way that we might have specialist cardiologists, specialist paediatric services, gerontology, so there are areas of discipline that might be cross discipline, but for intellectual disability there’s a real gap; is that right?

MR SIMPSON:   Indeed.  I mean, you know, wherever you’ve got a group with particular and often complex health care needs, it’s the normal health system response to have specialists.  That’s why we have paediatricians, that’s why we have geriatricians, that’s why we need specialists in intellectual disability health.  It took a long time to get the penny to drop on that one, but we have made some good progress there.

MS EASTMAN:   Well ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Would you agree – sorry, again.  Would you agree that some of the things for example that Ms Mills spoke about this morning so powerfully are endemic to the hospital health system generally?  That is to say, that although the impact on people with disability may be very great, for the reasons she explained, they’re also the sorts of experiences that almost everybody has when they come in contact with the health system, that is, an imbalance of power and knowledge between the medical practitioners and the hospitals and the patients.  Most people are unable to navigate that with any knowledge background of their own that is capable of meeting the obstacles that they may encounter.  So my point is that we may need to be going even further and doing some cultural changes or attempting cultural changes on a health-wide basis as well.

MR SIMPSON:   Yes.  I didn’t hear all of Jaquie Mills’ evidence, but I certainly accept the summary – accept the propositions that you’ve put in the summary, that there are, you know, there are big problems right across the health system for everybody.  Perhaps, you know, perhaps with the exception of people who have got, you know, a very high degree of social capital.  But people with – for people with intellectual disability, the problems are just so much greater.



COMMISSIONER SACKVILLE:   I wasn’t in any way ‑ ‑ ‑

MR SIMPSON:   I know, sure.

COMMISSIONER SACKVILLE:   ‑ ‑ ‑ detracting from that.

MR SIMPSON:   Sure, sure.

MS EASTMAN:   So coming back to the two strands of reform.  In 2009 you were able to achieve a broad endorsement of a policy statement supporting the two strands of reform, and that had 143 eminent individuals, and 43 national organisations, and 182 state and territory and local government organisations around Australia saying, “We’re committed to a reform approach that deals with the two strands”;  is that right?

MR SIMPSON:   Indeed, yes.

MS EASTMAN:   And that reform had to be accompanied by reviewing disability service systems, so that you had a complementary responsibility in disability services and in health;  is that right?


MS EASTMAN:   And so since 2001, the Council has pursued systemic responses based on a framework of these two strands; is that right?

MR SIMPSON:   Yes, there’s three strands including the disability service strand, yes.

MS EASTMAN:   And as the – as different policies have been initiated by governments at both a federal and a state level, those strands of reform have really guided your response to some of the policies and your contribution to advocacy into the policy development by government; is that right?

MR SIMPSON:   Yes, yes.  Those two – those strands remain our general guide, yes.

MS EASTMAN:   So you talk about one of the policies in your statement, on page 6 starting at paragraph 20, and this is the National Disability Strategy 2010-2020.  So that has been a 10 year plan.


MS EASTMAN:   And it was adopted by the Council of Australian Governments, COAG ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ in February 2011.  And this policy was intended – or strategy is intended to be a guide to policy and program development at all levels of government and actioned by the whole community.  And as you say in your statement it looks:

Beyond the specialist disability sector and aims to, “Focus our efforts towards achieving a society that is inclusive and enabling, providing equality and opportunity for each person to fulfil their potential”.

So this Strategy has some particular aspects with a focus on health, and one is that – one of the outcomes of this Strategy should be that people with disability attain the highest possible health and wellbeing outcomes throughout their lives, and that accompanies three particular policy directions; is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   So the policy directions which you’ve set out in paragraph 23 of the statement is, first:

All health service providers have the capability to meet the needs of people with disability.

Secondly – so policy direction number 2:

Timely, comprehensive and effective prevention, and early intervention health services for people with disability.

And policy direction 3:

Universal health reforms and initiatives that address the needs of people with disability, their families and carers.

So that’s the focus in terms of the health outcomes; is that right?


MS EASTMAN:   So this National Strategy is coming to an end this year.  And there has been some interim review of the Strategy; is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   And a review was undertaken and published in August 2018.  I think you make a reference to that in your statement at paragraph 26.

MR SIMPSON:   Correct.

MS EASTMAN:   And a copy, Commissioners, of that review can be found in part D of the tender bundle, behind tab 69.  So the review of the implementation of the National Disability Strategy for 2010-2020 was prepared by the Department of Social Services, which in turn commissioned a number of academics at the University of New South Wales.


MS EASTMAN:   And some of those academics, Commissioners, have given evidence in this Royal Commission, Sally Robinson and Rosemary Kayess.  So this report is a public report.

MR SIMPSON:   Correct.

MS EASTMAN:   And would it be fair to say if one looks at the findings made by those who undertook the review – and it was a desktop review – is that the conclusion was – and this is at page 21, 5.3:

In general, participants did not think the policy areas of the Strategy needed to be revised.  They preferred a holistic board principle and ambitious policy framework.  Cross-cutting gaps they highlighted were gender equality and participation.  They emphasised the policy areas were integral to each other and could not be prioritised.

So just pausing there.  Eight or so years into the development of the Strategy, there was no dispute or disagreement that the identification of the policy objectives were appropriate.


MS EASTMAN:   But the conclusions – and I will paraphrase here – in terms of steps taken to implement these policy directions, that they have been a failure; is that right?

MR SIMPSON:   I think that’s a fair statement.  I mean, my experience as an advocate, you know, regularly quoting the National Disability Strategy when I go and see senior bureaucrats or politicians, the response over the years has tended towards being a blank face, which says to me this document, despite it being a COAG document, you know, all the Prime Ministers – all the – the Premier - and the Prime Minister and all the premiers having signed up to it, it just does not have a sort of profile or a feeling of power within governments.

MS EASTMAN:   Do you know ‑ ‑ ‑

COMMISSIONER GALBALLY:   Could I ask a question here. Mr Simpson, I understand that – are there no targets that have to be met year by year on the Strategy?

MR SIMPSON:   Indeed.  I think that’s one of the key problems, Commissioner.  I think the – you know, I’ve seen reports, progress reports that have come out and, you know, it’s – there’s a lot of anecdotal things about things that have changed, positive things that have apparently changed.  You know, I would question to what degree those changes flow from the Strategy as opposed to other things that were happening, and indeed, there is a – I think that’s the key problem with these kinds of documents, that unless they have clear accountable targets that people have to report against, and are perhaps, for example, in the key performance indicators of chief executives, I think it’s very difficult to – for them to be taken as seriously as they should be.

COMMISSIONER GALBALLY:   And was there any specific targeted funding for the strategy, as far as you know?

MR SIMPSON:   Not that I’m aware of.

COMMISSIONER SACKVILLE:   That’s a characteristic of quite a number of reports in this field and perhaps others.  That is to say, they are highly aspirational, in very commendable terms, no doubt, but at a high level of generality.

MR SIMPSON:   Indeed.

COMMISSIONER SACKVILLE:   And if you have documents that are at a high level of generality, it’s very easy for people to commit to the general principles without actually doing anything.

MR SIMPSON:   Indeed, especially if it’s not an issue that you feel a – an underlying commitment to, in any case.

COMMISSIONER SACKVILLE:   Nobody is in favour of abuse.


COMMISSIONER SACKVILLE:   The question is – the question is how you stop it.


MS EASTMAN:   Would I be wrong in suggesting that there’s an aspect of appeasement in the Strategy of this nature, and that is that government can tell advocates, families and people with intellectual disability, “Here are our aspirations”, as the Chair has said, “This is what we hope to achieve”, but not then put the teeth in to implement.  And if that’s the case, is this really just a policy of appeasement?  Maybe that’s too harsh.

COMMISSIONER SACKVILLE:   That’s a fairly loaded word, I think.

MR SIMPSON:   Yes.  I don’t think I would go so far as to express that view, that it’s a policy of appeasement.  I think it’s most certainly an approach of doing something that doesn’t have the teeth that will ensure robust action, and that’s something that should have been well appreciated by those who designed the strategy in the first place, and by the Premiers and Prime Minister who signed up to it.

MS EASTMAN:   Has anything positive come out of the strategy over the past 10 years?  Have you seen any change in attitudes and values, the nature of research?  Is there anything that’s positive?

MR SIMPSON:   Look, you know, as in – focusing on health, I mean the – you know, quite a fair bit of positive stuff has happened over the last 10 years, but the question in my mind is whether that has been in any significant way influenced by the National Disability Strategy, as opposed to other factors like the Trollor research and our advocacy and other important ingredients.

MS EASTMAN:   All right.  Can we turn our attention to New South Wales.  So you say in the statement that:

Since 2001, the Council has advocated for New South Wales Health to enhance the response of public health services for people with intellectual disability.

And, in particular, you have advocated for:

The establishment of a statewide network of specialised intellectual disability health services as a back-up to mainstream – the mainstream system.

MR SIMPSON:   Correct.

MS EASTMAN:   So can I ask you about some aspects of the advocacy work that you’ve done over almost 20 years, and some of the initiatives that have been introduced in New South Wales.

MR SIMPSON:   Certainly.

MS EASTMAN:   So in some aspects, when we get to this material, you’re critical of the approach in New South Wales, but I think you also acknowledge that there are aspects of action taken by New South Wales Health which are quite innovative and may lead some health policy across the country;  is that right?

MR SIMPSON:   Indeed.  There’s very positive elements to what has occurred, yes.

MS EASTMAN:   And so as we go through this, while we might be identifying where there are weaknesses or deficiencies, it’s important, isn’t it, that we look at the overall whole system, and – because we’re not just spending all the time ticking off all of the good things that you don’t want to overlook, the fact that there have been some very important initiatives.

MR SIMPSON:   Indeed.  And that it is a – I would hope, an initiative which will influence other states and territories.

MS EASTMAN:   All right.  So if we look at the first five years, from 2001 through to 2006, I think you say in the statement that you didn’t see significant progress in relation to having specialised intellectual disability health services.

MR SIMPSON:   Correct.

MS EASTMAN:   So over this period of time, there were some minor initiatives and that included some funding for the development and piloting of training programs for hospital staff;  is that right?


MS EASTMAN:   And then you say that there was a change.  And it might be middle managers in New South Wales Health, but with some support by relevant – a relevant middle manager, you started to see a shift, and that meant working with counterparts in the New South Wales Department of Ageing, Disability and Home Care, that you had a Roundtable in June 2006;  is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   And what came out of the Roundtable was a very detailed proposal for specialised intellectual disability health services that would be backed by scientific research and case studies, so that you had an evidence-based approach to why there was not only a need, but also what could be done in relation to developing specialist intellectual disability services; is that right?

MR SIMPSON:   More that that was a proposal that we developed at that time to – I think to inform the Roundtable of the advocacy that we were – we were pressing.  But certainly the general thrust of that was then embraced by the Director General and Deputy Director general at the time, Robyn Kruk, and Richard Matthews immediately post-Roundtable.

MS EASTMAN:   And I think a couple of the documents that underpin the work of the Roundtable, Commissioners, can be found in part D of the tender bundle at tab 70.  So, Mr Simpson, I won’t take you through ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ that document, but it is available to the Royal Commission.  What was the upshot of this initiative?  So there’s the agreement.  It seems, am I right in understanding, a sort of shift, perhaps, in attitude within the Department of Health?

MR SIMPSON:   Very much so.  Very much so. 

MS EASTMAN:   And what ‑ ‑ ‑

MR SIMPSON:   From the top of the Department they were saying, “We’ve got to do something about this.”

MS EASTMAN:   And what was the outcome of developing the Framework and then any action taken in relation to the Framework?

MR SIMPSON:   Yes.  So the Framework – you know, and I think this is an illustration of how we at times have been able to work really collaboratively with government in developing strategies for action.  So the Framework to Improve the Health Care of people with Intellectual Disability was developed.  And that then led to – and that framework included strong emphasis on the need for a state-wide network with specialised services such as we had been advocating for.  There was an economic analysis prepared by KPMG.  And then in the 2010 State Budget we saw funding of one pilot specialised service, plus establishment of an intellectual disability network in the – in New South Wales Health’s Agency For Clinical Innovation, and then the following year a funding of two further pilot services.

MS EASTMAN:   All right.  And just before – in the few minutes that we’ve got before we break for lunch, can I just ask you about the pilot services and what was involved in the pilot services, which I think focused on Illawarra and Shoalhaven, north Sydney and south-west Sydney.  Those services through the pilot service were evaluated.


MS EASTMAN:   So do you know or were you privy to the outcomes of the evaluation and what the findings were?

MR SIMPSON:   I am privy to them, but only privy sort of on an “in confidence” basis, but I ‑ ‑ ‑

MS EASTMAN:   All right.  I won’t ask you to disclose anything that’s come out.

MR SIMPSON:   I’m sure the Commission, if it hasn’t already, would be able to get the evaluation from New South Wales Health.

MS EASTMAN:   All right.  If you can, perhaps as they say, “unknow” what you know on a confidential basis, but just talk about the difference that the pilot projects might have made in the delivery of health services in the three areas.  Did you see any change or any successful outcomes from the pilots?

MR SIMPSON:   Indeed.  Yes.  I had some involvement with each of the pilots.  Undoubtedly, we saw people with, you know, complex health care needs being at their GPs or other specialists being able to refer them to the pilot teams and then getting, you know, sort of comprehensive assessments, and much better health care treatment and plans for the future than they had previously been getting.  So from my perspective, the pilots were very successful.

MS EASTMAN:   And what happened following those pilots?  Was there any step taken by the New South Wales Government to expand the pilots into more – a variety of different areas, perhaps into regional areas and some of the outer suburbs of Sydney?  Do you know what happened?

MR SIMPSON:   Yes.  Yes.  I mean, we’ve – you know, nothing ever goes nearly quickly enough from an advocacy point of view.  And, you know, I utterly echo Commissioner Atkinson’s statement the other day about every year that we delay, 100 – 400 people are dying.  You know, however, it is, you know, notable and really valuable that we have now got to the point where in the State Budget in 2018 new money was provided, so that we have gone from three pilot services to a total of six slightly bigger services, plus we’ve got two specific state-wide hubs of expertise in mental health.  And all of these are just being about to start operation as we – as we talk now.

MS EASTMAN:   And – sorry.  Just to pause there.


MS EASTMAN:   This covers some of the evidence that Jacquie Small gave earlier ‑ ‑ ‑


MS EASTMAN:   Last week.

MR SIMPSON:   Yes.  That’s right. 

MS EASTMAN:   All right.

MR SIMPSON:   Jacquie’s involved in one of the new teams.  Plus in the – so there’s 15 local health districts in New South Wales.  So we now have six – we now have a specialised team in each of six local health districts.  In the other nine local health districts there is a clinical nurse consultant or the like as a sort of outreach worker, with a link to a particular one of those six teams.  So they will then also do some outreach work and some telehealth work with those.  So we – you know, we’ve got a modest but very valuable state-wide network now.

MS EASTMAN:   Is this subject to another round of piloting or is the commitment one for this to be part of the mainstay of the relevant local area health districts?

MR SIMPSON:   The funding is ongoing, so there’s no indication that this – it would be – it would stop at any time.  There will be an evaluation of the – of these teams which, you know, have got a more sort of common, and slightly, different model to – perhaps, to the pilots.  And, you know, in light of that evaluation, no doubt New South Wales Health will look at where to go from there.  And I can confidently predict that we will be advocating strongly for extension – you know, further extension of the funding for those teams, and preferably to have a bigger team than each of the existing teams and to have it in each of the 15 local health districts.

MS EASTMAN:   All right.  Is that a convenient time, Commissioners?

COMMISSIONER SACKVILLE:   It certainly is.  You don’t mind coming back after the adjournment?

MR SIMPSON:   I’ll be here, Commissioner.

COMMISSIONER SACKVILLE:   Very good.  We’ll resume at five past 2.

ADJOURNED                                                                                                                    [1.02 pm]


RESUMED                                                                                                                    [2.05 pm]


COMMISSIONER SACKVILLE:   Yes.  Thank you, Mr Simpson for returning.  Yes, Ms Eastman.

MS EASTMAN:   Mr Simpson, I want to deal with some other initiatives by New South Wales Health.  So if you’ve still got your statement open.


MS EASTMAN:   Can I ask you to turn to paragraph 44.


MS EASTMAN:   And two things I wanted to ask you about are the two initiatives referred to in that paragraph.  The first is a document or a publication called The Essentials from 2017.


MS EASTMAN:   And what’s that document about and what does it do?  I think you’ve got a copy of it, or, if you need a copy of it, let us know.

MR SIMPSON:   I think I’ve got enough in my head to talk to it.  You know, it was developed by the Intellectual Disability Health Network I n the Agency of Clinical Innovation, which is one of the three pillars of New South Wales Health that was set up in response to the Garling Inquiry some years ago.  And what it seeks to do is to provide a guide to local health districts, a very practical guide, on how they can step-by-step enhance the quality of health care they’re providing to people with intellectual disability.  So from my perspective, it’s very much a complementary initiative to the intellectual disability health teams.

MS EASTMAN:   How does it work in practice?

MR SIMPSON:   Well, as far as I know, it’s not working in practice at this stage.

MS EASTMAN:   Why not?

MR SIMPSON:   I don’t know of any – I don’t know why not.  But I don’t know of any adoption of it by local health districts.  I’m more than delighted to be proved wrong on that, but I don’t know of any implementation – any systematic implementation of it by local health districts.  And I think that’s a big problem.

MS EASTMAN:   The other initiative you refer to is the Disability Inclusion Action Plan 2016 to 2019.  And, Commissioners, perhaps I will just backtrack.  The Essentials document is in part D of the tender bundle behind tab 24.  And the Disability Inclusion Action Plan is in part D of the tender bundle behind tab 72.  So with the action plan, when you read the action plan, it’s a very positive document, isn’t it?


MS EASTMAN:   And throughout the action plan, I think I see the expression:

Person-centred approaches –

used numerous times.  So the action plan has, as a guiding principle, a culture of person-centred care.


MS EASTMAN:   And reference is made to person-centred care or person-centred approaches throughout this document.  What can you tell us about the action plan and the implementation of the action plan and whether or not it has achieved its goal of being person-centred.

MR SIMPSON:   I think it’s – I mean, my knowledge about its implementation is based on what I read in New South Wales Health annual reports, which suggest to me that there has been some useful but limited actions on it across New South Wales Health.  I don’t know of any more substantial analysis of what action has occurred.

MS EASTMAN:   Can I just ask, how do you pressure person-centred approach?  It sounds good, but how do you work out whether there is a person-centred approach?  I’m just trying to understand ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ the language used in the action plan.  And I know you’re not the author of the plan.


COMMISSIONER SACKVILLE:   Perhaps going back a step, what is a person-centred approach, as against a non-person centred approach?

MR SIMPSON:   Well ‑ ‑ ‑

COMMISSIONER SACKVILLE:   It begins to sound a bit like one of those Yes, Minister program with the hospital that won the best award but had no patients.

MR SIMPSON:   Person-centred planning is very much sort of best practice in the disability field in these times.  It’s very much around building the – whether it’s in the health context or whether it’s in the disability support context, it’s very much about building the support or care that you’re providing to someone around their personal needs and preferences, as opposed to providing the, you know, stereotypical care in all circumstances. 

To measure advances that you’re making in person-centred planning, you could look at – you know, you could look at policy and procedures documents in local health districts, but that begs the question of the implementation of those.  To me, the only really solid way of measuring person-centred planning would be by qualitative research focused on a large sample and looking at what is actually happening for individuals.

MS EASTMAN:   Has that occurred?

MR SIMPSON:   Not that I’m aware of.

COMMISSIONER ATKINSON:   Mr Simpson, in paragraph 45, you say you’re not aware of any robust action ‑ ‑ ‑


COMMISSIONER ATKINSON:   ‑ ‑ ‑ to implement The Essentials.  What would be a robust action to implement it?

MR SIMPSON:   A robust action would be a direction from the Ministry of Health for full implementation of The Essentials, which is very much set up in a step-by-step process way with the local health districts then having to report on measurable – the measurable steps that they have taken in accordance with The Essentials and being accountable for, you know, whether or not they have met those – that step-by-step action.


COMMISSIONER BENNETT:   Just to recap the question from the Chair about person-centred care, is it right – my understanding of it is that it’s putting the person and their special requirements or their needs or their perspective at the centre of what you work around, instead of what might be the institutional rules and practices.  It’s turning it to say instead of it just being put through a system and everybody’s the same, a cookie-cutter approach, that we’ll recognise that someone as an individual might have different ways in which it would work better for them and, therefore, tailoring the arrangements for it to work most effectively.

MR SIMPSON:   I think that’s a fair summary.  And, you know, I think we’ve heard from the – from people with disability and their families who’ve given evidence this week about – over the last week and a bit about where that has not occurred, where they’re just the same – the standard approach has been used and it’s flagrantly not worked for a person.  And we’ve heard suggestions about if the normal processes have been adapted in certain ways it would have worked for my son or daughter or for me.  That’s person-centred planning.

COMMISSIONER BENNETT:   And The Essentials when I read it gave some case studies of, initially, I think, three people, when I read it, guide with different levels of disabilities and descriptors of what had happened to them, and then recommends to look at the problem or that the medical condition they might have, or their concerns about coming into a medical environment, and look at it from a different lens and use different approaches to make them feel comfortable in that environment or to understand.  Is that, essentially, what The Essentials guide is?

MR SIMPSON:   It covers a range of areas.  And I’ve got to be frank that I haven’t looked at it recently.  But it covers a range of areas, but certainly that’s one of the key aspects.  I mean, there’s – you know, there’s a range of issues covered in there around developing workforce skills, developing communication skills, keeping appropriate data, specific issues about mental health treatment, hospitalisation and integration of the different levels of health care and integration between health care and disability support.

COMMISSIONER BENNETT:   And one last question, which goes to the point that Commissioner Atkinson asked about robust.  Are you saying that, even though it had been produced, and based on series of experts and the voice of people with disability, and it was distributed and available to health professionals and institutions such as hospitals or clinics, that people just put it on the bookshelf, and that by robust that you couldn’t see evidence that had changed the way that they had engaged, or that people with disability that may have been patients or clients didn’t feel that any change in their situation where the guide – The Essentials could have helped them.  Is that what you’re saying about robust implementation, the lack of robust implementation?

MR SIMPSON:   Sure.  Look, I’m not – more than happy to be proved wrong, but I’m not aware of any systematic implementation of it.  I’m not aware of instances where improved outcomes have flowed for individuals because of The Essentials, but that’s my knowledge – extent of my knowledge base, and I’m sure that – you know, I understand Nigel Lyons is giving evidence later in the week and I would hope he would be able to inform the Commission if I’m in any way wrong there.  I would be delighted if I am.

COMMISSIONER BENNETT:   It’s just, I think, important to have some clarity over that because when we try and work out why there is so much material and why there are practice guides in which both experts and people with disability have been consulted on and worked on ‑ ‑ ‑


COMMISSIONER BENNETT:   ‑ ‑ ‑ when we turn around and ask, “Well, why didn’t it happen?”  We just need to be very clear that it was there and not used.


COMMISSIONER BENNETT:   So that we can ask the question about why ‑ ‑ ‑

MR SIMPSON:   Certainly.

COMMISSIONER BENNETT:   ‑ ‑ ‑ they were not used in a very transparent way.

MR SIMPSON:   Certainly, certainly.  And the point you make about the development of it, I mean, it certainly was – there was a very extensive process of development, involving a wide range of expertise, and the Chair of the Intellectual Disability Network at that stage was Professor Les White, who’s a former chief paediatrician in New South Wales, formerly ran the Sydney Children’s Hospital at Randwick.  So, you know, very much coming from understanding all of the issues and challenges of implementing change in a complex part of the health system.  And so produced with a very practical understanding of that which should, to me, mean that – reinforce the notion that this is a practical document that could be used readily across the New South Wales health system.

COMMISSIONER BENNETT:   And one last question, Ms Eastman, if it’s okay.  Do you think the reason why it’s not implemented and adopted is because of lack of money?  Did it need money to change culture and practice or was it an unwillingness to do it differently, to make it person-centred versus the rules that they may have ‑ ‑ ‑


COMMISSIONER BENNETT:   ‑ ‑ ‑ to establish practice.

MR SIMPSON:   I think the issue eternally is one of institutional priority.  I mean, if you provided some specific money to implement it, that, no doubt, would promote implementation.  But at the end of the day, I think a lot of these things are a matter of institutional priority within, you know, a very large health system with competing priorities, you know, which have a wide range of arguments for and against each one, part of which is electoral demand.

MS EASTMAN:   I’m just checking.  All right.  So we’ve jumped a little bit between The Essentials and the Disability Inclusion Action Plan.  Can I just bring you back to the action plan.  And two questions that I want to ask you.  First of all, you make reference to some annual reports, and note that the action plan had a benchmark of 5.6 per cent employment for people with disability.  That’s not just intellectual disability, but all disabilities ‑ ‑ ‑

MR SIMPSON:   Correct.

MS EASTMAN:   ‑ ‑ ‑ is that right?


MS EASTMAN:   And that the recent report indicated that that 5.6 per cent benchmark has not been met, and 1.7 per cent of the workforce represents workers with disability;  is that right?

MR SIMPSON:   Yes.  And, in fact, there has been a steady decline in that percentage over the period of the action plan.

MS EASTMAN:   And I think you, perhaps rhetorically, raise the question that you would be surprised whether anyone with intellectual disability might be included in that cohort, or if they were, they wouldn’t be in significant numbers;  is that right?

MR SIMPSON:   Yes, and that reflects my much broader experience.  I mean, the NDIA, for example, who very – are very proud of the fact that – I think it’s somewhere around 13, 15 per cent of their employees have disability.  An issue that I and others have constantly been pressing is you need to include people with intellectual disability in that, and to the best of my knowledge there are very, very few indeed employees of the NDIA with intellectual disability, which shows a lack of thought about the valuable roles that such people could play in either of these contexts, and a lack of – you know, you’re missing out on the real – it comes back to that values issue.  If you’re in the workplace with people with intellectual disability day by day, hour by hour, you’re much more likely to learn about, “Hey, you know, I now understand so much better this group and what valuable human beings they are, just like any of the rest of us”.

MS EASTMAN:   All right.  Other initiatives in New South Wales – and I will just touch on this very briefly – in paragraph 49 you refer to the New South Wales Living Well, a strategic plan for mental health in New South Wales which is a 10-year plan, 2014 to 2024.  And intellectual disability is covered as part of that plan;  is that right?

MR SIMPSON:   Yes, and that was extremely refreshing, in light of some of the frustrations we had had at the Commonwealth level, to have a very specific focus on intellectual disability there.

MS EASTMAN:   And – well, I think when we get to the Commonwealth ‑ ‑ ‑


MS EASTMAN:   There was a lot of discussion at the Commonwealth level about including people with intellectual disability, but when you saw the print on the page there was an omission.

MR SIMPSON:   That was a pattern, yes.

MS EASTMAN:   All right.  So are there any particular aspects of this New South Wales Living Well Strategic Plan, which you have observed as either working well and creating improvement, and also if you can comment, if you’re able to, any areas where there remains some gaps in implementation for people with intellectual disability?

MR SIMPSON:   Yes.  And I think an important thing to emphasise is when the plan was released, Premier Baird committed the State Government to accepting all of the actions outlined in the plan.  So here we are now, 10 out of 14 years into the implementation of the plan.  We’ve certainly seen some progress in relation to mental health care for intellectual disability in New South Wales, and I’ve, you know, referred to some of those in my statement.  There has certainly been some progress.  But, you know, we are nowhere near the full implementation of these actions that are listed here.  And so, you know, I see no evidence of any sort of full implementation of the accessible mental health services guide that Professor Trollor wrote.  I see no indication that there’s – that all staff in mental health and disability services are receiving adequate – adequate training.  That’s probably the main things I would emphasise.

MS EASTMAN:   All right.  Can we turn our attention now to the Commonwealth, so at a federal level, that the Council also undertakes advocacy at a national level;  is that right?

MR SIMPSON:   Yes, yes.

MS EASTMAN:   And some of the projects that you’ve been involved in are set out in the statement.


MS EASTMAN:   Can we start with the issue of the Annual Health Assessment.  And I think Professor Lennox is going to talk about this shortly, and I will ask him some questions about a particular program that he was involved in called the CHAP program.


MS EASTMAN:   But the matters that you have addressed in your statement is the Annual Health Assessment and the items for the purpose of Medicare.


MS EASTMAN:   So a new item number was introduced in 2006; is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   And in paragraph 58 you say – and I think this was – just preface this – a process of quite strong lobbying and advocacy to get that change in 2006.


MS EASTMAN:   But you say:

Disappointingly, there was no substantial implementation strategy carried out by the Federal Department of Health and Ageing, as it then was, and the take-up rate on these new Medicare items was very low and it’s climbed very slowly.

So you say to approximately 8000 in the last year.  And the 8000 has to be matched against your figure here of 450,000 people in Australia with intellectual disability.


MS EASTMAN:   So that’s a chasm, isn’t it?

MR SIMPSON:   Indeed. 

MS EASTMAN:   If you’re saying the objective of having the Annual Health Assessment is, at best, 450,000 ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ people in Australia with intellectual disability having an annual assessment, and even if we just had margins of errors and percentages in that, the difference between 450,000 and 8000 has to be significant.  Does it represent a failure in introducing this new item into Medicare?

MR SIMPSON:   Yes, yes.  I think the – you know, given the whole background and history of devaluation and under-diagnosed health conditions, what was really needed there was a really robust process of promoting take-up.  The – and I think – and this is reflected, to some degree, in paragraph 60 – state disability departments tended towards strongly encouraging or even directing that disability accommodation services to facilitate Annual Health Assessments for people, and so I would expect that a very high proportion of the take-up was – came from there.  And hopefully ‑ ‑ ‑

MS EASTMAN:   It’s still only 8000.

MR SIMPSON:   Yes, yes.

MS EASTMAN:   So if we looked at the overall number of providers of supported accommodation, be it in New South Wales or nationally, a cohort of people in such a supported accommodation, that would exceed 8000, wouldn’t it?

MR SIMPSON:   Vastly.

MS EASTMAN:   Do you know if there has ever been a survey of the disability providers for supported accommodation as to the extent to which they’ve taken up having Annual Health Assessments?  Do you know if that data has been collected?

MR SIMPSON:   Not that I’m aware of.

MS EASTMAN:   All right.

MR SIMPSON:   As I say, it was a direction from New South Wales Disability Services to both its own and funded supported accommodation providers, but I don’t know of data collected that measured the success of that direction.

MS EASTMAN:   All right.

COMMISSIONER SACKVILLE:   Do you have a view as to why the take-up appears to have been so slow?

MR SIMPSON:   I think that although the remuneration that was offered to GPs was substantial, I think there was still a feeling amongst GPs that, “This is unnecessary, you know, I know this person, I know their needs.  And I’m running a very busy practice.  I just don’t have time to do this sort of thing.”.  It may well also relate back again to the issue of values about whether I just see this as an important part of my busy day to be focusing on this group.

COMMISSIONER SACKVILLE:   Do you think it’s possible that GPs would have billed under another designation for services that might have been otherwise described as an annual check-up?

MR SIMPSON:   That is possible.  There are – some GPs may have billed for sort of just long consultations and done the assessment within that, sort of without realising that they could charge the specific items, but I would – but I couldn’t imagine that sort of having a dramatic effect on the figures we’re talking about here.

MS EASTMAN:   I’m just keeping an eye on the time, Mr Simpson.  And I don’t want to shortcut any part of your evidence.


MS EASTMAN:   But some of the matters that we might go through, I might go through a little more quickly ‑ ‑ ‑

MR SIMPSON:   Yes, that’s fine.

MS EASTMAN:   ‑ ‑ ‑ if that’s convenient.  So one of the other initiatives that you identify at paragraph 61 is back in 2008, and the Rudd government established the National Health and Hospitals Reform Commission.  And your Council made a comprehensive submission to the new Commission.  And one of the outcomes of the Commission’s work was a final report in 2009 called A Healthier Future for All Australians.

MR SIMPSON:   Correct.

MS EASTMAN:   And what did you want to say about the inclusion of people with intellectual disability in this final report?

MR SIMPSON:   Look, I think, flowing to a fair degree from a conversation that Professor Lennox and I were fortunate enough to have with Dr Bennett, the Chair of that Commission, you know, there were specific paragraphs in a very lengthy report, but specific paragraphs acknowledging the stark health and access equalities facing people with intellectual disability and emphasising some of the ways in which the Commission’s recommendations could work for people with intellectual disability.

MS EASTMAN:   And then there has been subsequent meetings with the then secretary of the Federal Department of Health and Ageing in 2010.  And those conversations resulted in a focused advocacy on three particular issues, which you identify in paragraph 64.

MR SIMPSON:   Correct.

MS EASTMAN:   So the planned national network of Medicare Local, and the planned e-records, now My Health, and mental health.

MR SIMPSON:   Correct.

MS EASTMAN:   So that focus arose out of consultations with the federal department; is that right?

MR SIMPSON:   Yes, with Ms Horton.  Yes.

MS EASTMAN:   Can we briefly touch on each of the three.


MS EASTMAN:   In terms of Medicare Locals, so this is to do what?  What exactly was the Medicare Local objective?

MR SIMPSON:   It was about enhancing the quality and efficiency of GP and other primary health services, including a specific focus on identifying gaps and groups who are missing out and seeking to address those gaps.  You know, we then – the federal department funded us to prepare some fact sheets for Medicare Locals and local disability groups to really encourage their interaction.  Our subsequent audit showed extremely modest sort of action flowing from that by Medicare Locals.

MS EASTMAN:   Well, I think when you did the audit in 2014 there were 61 Medicare Locals.  Of the 61, 21 responded.  And then you’ve set out the results in summary form in paragraph 67; is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   Okay.  The next one was the focus on e-health records, now called My Health Records.  You might recall the Chair asked a question about this – My Health records during the course of the hearing last week.  So you deal with this in your statement.  And I want to just draw your attention to paragraph 71 and 72.  And, in summary, what has been the impact on e-health and now My Health Record in terms of having a reliable database for people with intellectual disability and the reliability of those records in terms of their treating practitioners?

MR SIMPSON:   Very little at this stage.  There hasn’t been a targeted focus on that group who have particular accessibility needs.  There are broader issues about health care providers sort of buying into the program and, therefore, inputting – inputting data.  You know, it’s a matter of great frustration to us, because we do see – we continue to see My Health Record as potentially being very valuable for people who have difficulty giving medical history.  But it’s not doing that right now.

MS EASTMAN:   I think somebody said last week, “Well, it’s only” – I think Rebecca Kelly might have said this.  “It’s only as good as the data that’s entered into it ‑ ‑ ‑”


MS EASTMAN:   “‑ ‑ ‑ as to the value of the database”; is that right?

MR SIMPSON:   That’s right.  Both the fact that practitioners will – that, you know, all practitioners will input data and that the data is accurate.  And that, of course, touches on other issues about the inaccurate sort of information that’s often put in about people with intellectual disability.

MS EASTMAN:   So then we move to mental health.  And in 2013 there was some funding and support from the federal department.  And the Council held the first National Roundtable on Mental Health of People with Intellectual Disability.


MS EASTMAN:   And that was in collaboration with the Centre that Julian Trollor heads up; is that right?

MR SIMPSON:   Yes.  And I would just like to mention a number of things that we’ve talked about.  Yes.  We’ve been perhaps in the centre of a lot of these things, but we’ve been working with terrific allies, and I don’t want to give the sense that it’s just us.

MS EASTMAN:   But this was collaboration with Julian Trollor’s research team.


MS EASTMAN:   But also the Queensland centre ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ for Intellectual and Developmental Disability and the Australian Association of Developmental Disability Medicine.


MS EASTMAN:   Which I’m going to ask Professor Lennox about also.


MS EASTMAN:   I’m giving him a heads-up of the questions that’s coming, so he’s ready.  So this Roundtable was very important, wasn’t it, because it brought together 95 leaders in mental health, disability and a range of related spheres.

MR SIMPSON:   Yes, including government representatives.

MS EASTMAN:   Yes.  So you were able to have really senior public health – public servants in public health, and also the chief psychiatrists for the Commonwealth, State and Territories.  So the work done by this group resulted in a Communiqué with eight key elements that have been identified.  And you’ve set them out at paragraph 76; is that right?

MR SIMPSON:   Correct.  Yes.

MS EASTMAN:   And I think the expectation was that this might be one of those moments in time in terms of being a turning point; is that right?

MR SIMPSON:   That was our hope.

MS EASTMAN:   And did that happen?

MR SIMPSON:   Not in any reliable way.  I mean, I – and just focusing on the first eight key elements which, you know, from consensus outcomes from that Roundtable, inclusion of intellectual disability, mental health in all mental health initiatives.  You know, as the saga that follows in successive paragraphs shows, that regularly has just not occurred at all, until – some action occurs when we scream blue murder.

MS EASTMAN:   But is this an example where you bring together the people who have got the direct knowledge and experience, that you can work collaboratively both between advocacy experts and government to agree on a policy, to agree on initiatives, to agree on what needs to be done.  And then, whether it’s a Communiqué or Roundtable Report, nothing seems to happen after that, or it’s a little bit of action, but nothing that becomes systemic and sustained.  Why?

MR SIMPSON:   That’s a ‑ ‑ ‑

MS EASTMAN:   I mean the Royal Commissioners have asked you a little about it, but one can sense a frustration, but how many roundtables do you have to attend before something will actually happen?

MR SIMPSON:   Indeed.  Indeed.  And, look, it’s a theme through our advocacy over time that we’ve made some substantial gains.  At the same time, all too often, it’s one step forward, followed quickly by a step backwards.  What I’m hoping is that the Royal Commission will be a – will contribute to a game-changer here to – what we really need is at the highest level of politics, in the Commonwealth and States, in the health professional bodies, is to see the health of people with intellectual disability as an absolute top priority.  And that’s something that we’ve consistently been fighting for, and we’ve had, you know, some measures of success in, with our – all our allies.  I’m really hoping that the Royal Commission is going to really lift that action to a further major level.

COMMISSIONER SACKVILLE:   Is it your position that the – and I’m jumping ahead here – the 2019 Roundtable, which produced a report and set of recommendations and a summary – has developed recommendations that are capable of swift implementation, if there is a political will to do it?

MR SIMPSON:   Certainly.  Certainly.  You know, and those – you know, they were a development of what came out of 2013.  And – yes – I think – and the same with the pending National Roadmap, which we’ll come to, I think, you know if the Prime Minister and the State Premiers said, “Right.  This is something we’ve got to do now and do quickly” – it can’t happen overnight; it has to be done in a measured way.  But it could certainly happen much more quickly than, you know, the 10-year roadmap which we’re contemplating.

COMMISSIONER SACKVILLE:   But the point is that there is a plan and set of proposals that are capable ‑ ‑ ‑

MR SIMPSON:   Indeed.

COMMISSIONER SACKVILLE:   ‑ ‑ ‑ of achieving significant change and the objectives that you’ve sought to achieve over many years.

MR SIMPSON:   Absolutely.

MS EASTMAN:   Well, perhaps we might jump to the Roundtable.  So you’ve dealt with this at paragraph 100 of the statement.  So there was a National Roundtable.  Assume that was a meeting that occurred in Sydney in August last year.


MS EASTMAN:   And what followed from that was a draft Communiqué, including a draft National Roadmap for action.

MR SIMPSON:   Correct.

MS EASTMAN:   And there will be in April a follow-up meeting with respect to the final roadmap.

MR SIMPSON:   Correct.

MS EASTMAN:   And then that’s going to be part of a 10-year plan.

MR SIMPSON:   Part of the primary health care 10-year plan, that’s right.

MS EASTMAN:   Have you been given any indication or provided with any explanation as to why this needs to be a 10-year plan?  I know you’ve just, perhaps, anticipated me asking that question by saying, “It can’t be done overnight” ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ but if you look back to what you’ve been doing in 2005, 2006, 2009, 2013, the elements of this new plan are not materially different from the initiatives that have been identified over time.  It’s not like on 2 August everybody went, “Look, we’ve found something new.”


MS EASTMAN:   So it’s based on all of the work that has been done.  And you say it can’t be done overnight.


MS EASTMAN:   Where is the line to be drawn between overnight and what seems to be a 10-year plan?  Now, you might say to me 10 years is very reasonable in the circumstances, but that’s not the tenor of the evidence, as I understand, that you’re giving.  And I think you’ve referred to Commissioner Atkinson also talking about – in her questions about urgency.


MS EASTMAN:   So I’m going to press you a little bit on this idea ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ of a 10-year plan.  Where is the line in terms of implementing the roadmap?  If it’s not overnight, what should it be?  What should the target be?

MR SIMPSON:   I would say that, you know, the – looking and thinking about what’s in the draft Roadmap, which will be refined at the coming second roundtable, you know, if there was the right political imperative, I see no reason why that couldn’t be implemented over five years in a measured, responsible way.  And that is what I would love to see happen.

COMMISSIONER SACKVILLE:   I believe methodical is the current word to describe that process.  We’re going to produce an interim report in October this year.  We’re required to do so by the Terms of Reference.

MR SIMPSON:   Right.

COMMISSIONER SACKVILLE:   Would you be able – not necessarily at this moment, but would you be able to identify proposals that have been put forward that could be included in an interim report that will be capable of implementation within a considerably shorter period than five years, say, six months or 12 months?

MR SIMPSON:   I’d be delighted.

COMMISSIONER SACKVILLE:   Well, we might give you some homework.

MR SIMPSON:   That’s welcome.

MS EASTMAN:   All right.  I want to now move to the complementary role of disability services with health.  And you deal with this at paragraph 104 and following of your statement.  And there’s quite a lot of material in here, but there’s one aspect that you identify in your statement which you say causes particular concern.  And that is the collection of data and the – sorry – collection of data, number one, but also the reports in relation to the deaths of people with intellectual disability.  And so this is an issue of concern that you have, that, with the transition to the NDIS, you’re concerned that the good health of people with disability may be diminished in the NDIS environment; is that right?

MR SIMPSON:   Correct.

MS EASTMAN:   And one aspect is the type of information and data the NDIS Commission is collecting; is that right?

MR SIMPSON:   Yes.  The deaths review role is – yes.  Yes.

MS EASTMAN:   What is the particular concern about that?

MR SIMPSON:   Well, whereas the New South Wales Ombudsman was reviewing all deaths in supported accommodation of people with disability, in a methodical way, the role of the NDIS Commission is that deaths in connection with service provision are a reportable incident without, you know, any particular direction as to what the Commission then has to do with that data.  Secondly, the NDIS Commission only has jurisdiction over disability services, NDIS disability services, whereas ‑ ‑ ‑

MS EASTMAN:   So what does that mean in a practical sense?

MR SIMPSON:   Well, the big limitation is that it doesn’t include health services, and that was the – that’s one of the beauties of the New South Wales Ombudsman role, that it was looking – you know, if someone died it was looking at sort of what had gone wrong in both the disability service sector and in the – and in the health sector.

MS EASTMAN:   So what would it mean for – we heard evidence from Rachel Browne last week and the circumstances of her son passing away in 2016.


MS EASTMAN:   Would his death be reportable now?

MR SIMPSON:   I don’t believe so because ‑ ‑ ‑

MS EASTMAN:   He lived at home.

MR SIMPSON:   It wasn’t in connection with disability – NDIS disability supports.  No, it wouldn’t be reportable to the Federal Commission.  You’d be relying on the – relying on the coronial system.

MS EASTMAN:   And what – and it may be obvious, but what is the concern if what is now reportable incident, and in particular a reportable death, being confined to NDIS providers?  What does this mean?

MR SIMPSON:   There’s no black and white answer to that.  I mean, the – there are some – you know, some people who are self-managing their funds may not necessarily be using those providers, as I understand it.  I don’t think that’s a big issue.  But the – you know, I think the more major issues are the two that I’ve said, that (1) there’s no direction to the Commission to carry out a thorough review of the death, and (2) whatever it does it only relates to the disability service side of things, as opposed to the role of health services.

MS EASTMAN:   All right.  The other matter that you identify as being one of particular concern is the NDIS not accepting responsibility for the assessment and managing of swallowing problems experienced by many people with disability, for which state disability departments had traditionally accepted as a central responsibility.  So you say the NDIS stance of not funding these services created a risk of death from choking or aspiration pneumonia.  So you’ve done a campaign in relation to this issue.


MS EASTMAN:   And did that result – that campaign result in a positive resolution?


MS EASTMAN:   And what was the outcome?

MR SIMPSON:   The outcome was that the NDIA accepted responsibility for funding those kind of supports in December 2018.  That has now been further cemented in a sort of more long-term agreement by the NDIA to fund a range of other arguably health-related supports.  I mean, I still look back on that swallowing issue absolutely aghast that the NDIA was refuse – was taking the stance that it wasn’t their responsibility.

MS EASTMAN:   Do you think it might have just been a teething problem as part of a new approach transition?

MR SIMPSON:   It was a demarcation fight.  But, look, they had the – State Disability Services had always accepted the primary responsibility for that issue around Australia.  And certainly in New South Wales, which is where the fight was centred, they had the money.  They had the – they had the whole of the New South Wales disability budget.  It had always been seen as a disability support issue.  It was a – you know, a demarcation fight between governments that was putting people’s lives at enormous risk.

MS EASTMAN:   All right.  The other problem that you identify – this is paragraph 125 – is – and you say this:

Another problem with the NDIS quality and safeguarding regime is that while it requires NDIS-funded services to report to the NDIS Commission all use of chemical restraints, the surrounding statutory requirements are only focused on ensuring appropriate behaviour support and not also ensuring appropriate expertise in the prescription of psychotropic medication to people with disability.

And so you deal in that paragraph with this being an issue of concern.  In terms of chemical restraint and the issue that you raise in relation to reports to the NDIS Commission, what is the importance of this issue that you have identified to the health and wellbeing of people with intellectual disability?

MR SIMPSON:   Extremely important in the sense that, you know, the NDIS Commission’s at least central focus is on whether people are getting appropriate behaviour support to complement the chemical restraint.  The clear danger here is that as to whether the prescription of the medication by the doctor is appropriate in the first place, both in relation to whether the person should be prescribed medication and whether this is the right medication.  So – and I don’t know if I’ve spelt this out clearly enough in my recommendations, actually, but what I – you know, what I think is needed is, you know, a specific system to demand that prescription of psychotropic medication to people with intellectual disability, especially if it’s in the label of chemical restraint, is only occurring by medical practitioners who have got appropriately certified skills and knowledge in that sphere.

MS EASTMAN:   All right.  And then in paragraph 126 you say:

 The Commission has just released some research that it commissioned in relation to deaths in disability services.

And that’s something that you’re reviewing at the present time;  is that right?

MR SIMPSON:   Yes.  And I have – I mean, the key point for me having, you know – that came out, I think, the day that I was signing my statement.  The key point that I want to emphasise now is that I welcome the fact that the NDIS Commission is now planning to bring in specific standards, which are the things that service providers must comply with in relation to meal time supports – those issues around dysphagia, and so on – I continue to be alarmed that there are no standards in relation to other aspects of health care.  For example, the old State requirements for Annual Health Assessments, annual dental assessments and so on.

MS EASTMAN:   All right.  We have done a very quick overview of the initiatives, both at the state and the Commonwealth level.  And these are matters that the Royal Commission will need to examine in further detail in the course of the Royal Commission’s work.  Can I turn now to the final parts of the matters that you raise in the statement, which is the role of advocacy, but then turning to your suggestions as to what needs to happen.  So I just want to ask you a little bit about advocacy.  And you may have been here this morning when I asked Jaquie Mills some questions about advocacy.  She gave evidence this morning to say that she came to advocacy by being the mum, and then through her work in developing microboards, that she learnt advocacy skills and she learnt from professional advocates.  You are a professional advocate; is that right?


MS EASTMAN:   And it’s difficult to become an advocate in the sense that it’s not necessarily something that people are born with or have the skills to do;  is that right?

MR SIMPSON:   No.  I think aptitude certainly helps a lot but skill development also is really important.

MS EASTMAN:   A lot of the role of an advocate is to navigate disputes and conflict.


MS EASTMAN:   But it’s also to be able to be persuasive when you’re talking about the area of systemic advocacy; is that right?

MR SIMPSON:   Indeed.

MS EASTMAN:   And so these are skills that, for many of us, take a long time to develop.


MS EASTMAN:   And part of advocacy is also building relationship.

MR SIMPSON:   Indeed.

MS EASTMAN:   And one of the challenges, I think, asking you to give the evidence that we have today is that you have spent a very long time in the area of systemic advocacy, building relationships;  is that right?

MR SIMPSON:   Yes.  And I’m still learning as well.  I ‑ ‑ ‑

MS EASTMAN:   And sometimes there’s a difficult line to draw between maintaining those relationships but being able to have what might be, in the language of diplomacy, constructive dialogue; is that right?

MR SIMPSON:   Yes, yes.  I think it’s – there’s a danger of, you know, if you get too close to the people to whom you’re advocating, there’s a danger of capture, I think the expression is.  I think it’s a fine line, and I hope it’s one that my organisation deals with pretty well, of being really very clear about what we are seeking and being respected for not being willing to compromise on values issues, but at the same time recognising that building cooperative relationships with Ministers, with bureaucracies, leads to what they come up with being much better informed.  And I think, you know, we’ve seen some examples of that, I feel, in our dealings with both Commonwealth and state health.

MS EASTMAN:   And one of the challenges, regardless of whether it’s systemic advocacy or individual advocacy or advocacy through legal mechanisms, is the cost of advocacy;  is that right?


MS EASTMAN:   And sometimes there is a dependency on the need for government funding to support advocacy services.

MR SIMPSON:   Pretty much universally.

MS EASTMAN:   And so that also creates a tension that advocacy in relation to the very agency that may be supporting and funding an advocacy centre also raises issues from time to time;  is that right?

MR SIMPSON:   Indeed, indeed.  And, you know, we have to maintain our integrity by taking the risk that sometimes we’re saying things that are going to be unpopular, and – but we must maintain our integrity to people with disability in those situations.

MS EASTMAN:   So one area is if there is – is that advocacy is a very important tool either in bringing together the research, but identifying problems, and particularly for people with intellectual disability, who might otherwise be silent;  is that right?

MR SIMPSON:   Yes.  And a key element of the way we approach advocacy that’s developed in recent years is people with intellectual disability being leaders in that advocacy, and that – you know, that, of course, requires support to people, just as in other areas of their life, to develop their skills to – and to implement those skills.

MS EASTMAN:   And do you think – and I’m not asking you to, as they say, blow your own trumpet here, but do you think that people underestimate the importance of advocacy in the field of disability generally, but specifically for people with intellectual disability or the broader notion of cognitive disability which is the subject of this public hearing?

MR SIMPSON:   I think some people recognise it extremely clearly, others don’t.

MS EASTMAN:   Can we turn to what needs to happen.  And, again, Commissioners, I’m conscious of the time.  And it may be that we need to sit beyond the 4 o’clock conclusion, if that’s convenient.

COMMISSIONER SACKVILLE:   Or even if it’s not.

MS EASTMAN:   Even if it’s not.  But I think this is very important evidence.  And I want to highlight some of the matters that ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Yes, I don’t think we should rush.  So you go ahead.

MS EASTMAN:   ‑ ‑ ‑ Mr Simpson has raised in his statement and shortly you will also hear from Professor Lennox.  So in terms of what needs to happen, you’ve thought very carefully about your experience over now many years.  And I think one of the concerns that you had was, “Am I just going to be saying what I’ve been saying for the past 20, 30 years, and what fresh news can I bring to the issues”.  Was that part of asking you to say what needs to happen is – are you just repeating what you’ve always said or can you bring a new perspective to it?

MR SIMPSON:   I always try to be self-reflective and challenging, and I’ve got colleagues around me who will regularly challenge me.  So I – if I was just saying the same things as I was saying five or 10 years ago, I would think it’s time to retire.

MS EASTMAN:   Right.  Well, before you retire – and I don’t think we’re there yet – can I ask you to look at paragraph 134.  And these are the suggestions that you make in relation to the health system.  And you identify 10 particular suggestions.  Just conscious of the time, are there particular – and the Royal Commission will read all of these suggestions – but are there particular matters that you want to speak to that you’ve identified in the 10 suggestions in that paragraph?  Otherwise, I will ask you one.

MR SIMPSON:   Yes, look, they’re all very important to me and I think most of them we’ve touched on in some ways as we’ve gone along, but – so ‑ ‑ ‑

MS EASTMAN:   Well, I just want to ask you about one which you’ve identified in subparagraph (5).  And you’ve said:

Each State and Territory establishing a network of specialised intellectual disability health teams to back up and support the mainstream system.

And I’ve asked you questions about New South Wales.


MS EASTMAN:   But do we take it that they’re – that this approach of having a network of specialised intellectual disability health teams already exists in all other states and territories?

MR SIMPSON:   No.  There’s – basically, there’s one centre in Queensland, there’s one centre in Victoria, there’s a small centre in South Australia, there’s no centre in other states and territories.  There are some bits and pieces of specialist activity, but that’s the basic story at present.

MS EASTMAN:   And why have you focused that on being a responsibility of states and territories, rather than identify this to be an initiative of the Commonwealth, given that the Commonwealth is setting itself a 10-year plan to implement a range of measures?

MR SIMPSON:   Because the New South Wales Government has accepted responsibility for it.  I see these teams – it doesn’t have to be this way, but the way I’ve tended to see these teams as being within the public health system of the state, and, therefore, something for which the state is responsible.  But you could certainly argue it either way.

MS EASTMAN:   All right.  I’ll just check that – if any of the Commissioners have any questions.  And I’m racing a little bit at this point, but any questions arising from the What Needs to Happen recommendations in paragraph 134.

COMMISSIONER GALBALLY:   I’ve just got one question.  And that is the issue of functional and cognitive disability and, you know, your focus as an organisation on intellectual disability.


COMMISSIONER GALBALLY:   And whether you see, you know, the boundary.  I mean, with this, for instance, complex communication needs ‑ ‑ ‑


COMMISSIONER GALBALLY:   ‑ ‑ ‑ where people might not be intellectually disabled, but still be highly disadvantaged ‑ ‑ ‑


COMMISSIONER GALBALLY:   ‑ ‑ ‑ in every sense.  So you would include them – you’re not – I’m just trying to understand the demarcations that you’re suggesting.

MR SIMPSON:   Very good question, Commissioner.  I mean, I would not for a moment deny that people with the range of different disability have different kinds of disadvantage in the health system.  And there’s substantial overlaps between some of those disadvantages for different groups.  What I also know is that people with intellectual disability experience, you know, now extremely well-documented and often quite particular disadvantages.  And the role of people with intellectual disability themselves in being part of reform is very important. 

You know, within those contexts, I think there remains a case for specialised action in relation to the health of people with intellectual disability, but readily acknowledging that we also need to take action in relation – and in often cases very major action in relation to the health of people with other disability.  There’s a number of complexities there.  I mean, for people with acquired brain injury, rehabilitation, there’s a specialty in rehabilitation medicine which, you know, already has a substantial role.  And so the – you know, there are some specifics – there is a specific service system of sorts already there.  Yes.  It’s a complex question.

COMMISSIONER GALBALLY:   Yes.  I guess the areas of restrictive practices and the usage you said of different medications.



MR SIMPSON:   So certainly in a holistic look at reform, as the Commission quite rightly will need to take, you know, I suppose from my point of view I would be hoping for a very specific focus on people with intellectual disability, but, of course, also considering what focus there should be, and a very robust focus, on people with other disabilities.

MS EASTMAN:   You also make some recommendations in relation to disability support system.  This is paragraph 135.  And, associated with that, some further recommendations in paragraph 136.  Just reflecting on those recommendations, is there anything in particular that we haven’t touched on on our way through that you want to address with the Commissioners?

MR SIMPSON:   I mean, the development of the autonomy – you know, I think has come through in some other evidence, including the very first evidence from Justine O’Neill and Jack Kelly, that the support of the development of autonomy for people with intellectual disability in relation to their own health care really important.  And support to families, to enable them to be health supporters and strong advocates, I think really important.  The NDIS workforce issues, of course. 

And the – yes, 135.4.  This will tie in with something that I think Professor Lennox will be talking about.  You know, I think for people with complex health needs, we need a role focused on health care facilitation as part of disability support.  As – you know, as you’ve heard from a number of witnesses, parents are becoming, you know, full-time or 72 hours a week health care facilitators for their sons or daughters.  I think for people with complex health care needs there needs to be a sort of funded complex health facilitation role.  And that may also pick up on a suggestion that I know that a dietitian, Lyn Stewart, is pressing to the Commission in relation to the need of that kind of coordination role, specifically for people with dysphagia.  So that’s something that I would stress.  I’ve said here:

Responsibility of the NDIA.

We raised this with a senior NDIA person the other day and there wasn’t an immediately warm response.  It should be the responsibility of the health system.  That’s an issue that needs to be worked through.  Personally, I see it as part of disability support.

MS EASTMAN:   So that integration is going to be an ongoing issue;  is that right?

MR SIMPSON:   Absolutely.

MS EASTMAN:   Now, you also identify immediate priorities for action.  And this is paragraph 137 and 138.  When you say “immediate”, what timeframe are you speaking to in relation to the matters that you’ve set out in those paragraphs?

MR SIMPSON:   I think it would have to be gradated.  I’ve already said the Roadmap five years is probably the earliest that one could reasonably expect implementation of that.  But other things could certainly happen more quickly.  But, overall, I would say some of these things– could happen immediately.  You know, all of them should happen over five years at the very most.

MS EASTMAN:   Mr Simpson, thank you very much for your evidence.  I know we’ve raced through some of the matters, but we have the benefit of a very detailed and comprehensive statement.  Unless there’s any further questions that the Royal Commissioners have, that’s Mr Simpson’s evidence.

COMMISSIONER SACKVILLE:   Thank you, Mr Simpson.  We, too, express our appreciation to you for the very detailed statement that you’ve made, and also for your contributions to the work of the Commission, which is highly appreciated.

MR SIMPSON:   Thank you very much.



<THE WITNESS WITHDREW                                                                                                                    [3.08 pm]


MS EASTMAN:   Commissioners, may I ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Do you want to take a short break.

MS EASTMAN:   ‑ ‑ ‑ formally tender the statement, so that becomes exhibit 4.20.

MS EASTMAN:   And if we aim on working till about 10 past or quarter past 4, it might be to everybody’s interest to have a short comfort break at this point.

COMMISSIONER SACKVILLE:   All right.  Thank you.  We will take a short break and resume shortly.

EXHIBIT #4-20 STATEMENT OF MR JAMES SIMPSON DATED 12/02/2020 (STAT.0055.0001.0001)


ADJOURNED                                                                                                                    [3.09 pm]


RESUMED                                                                                                                    [3.19 pm]


MS EASTMAN:   It was looking a little bit nervous there, but we do have a witness.  Professor Lennox is here.

COMMISSIONER SACKVILLE:   I thought you might have been frightened away.

<NICHOLAS GORDON LENNOX, AFFIRMED                                                                                                                    [3.19 pm]


COMMISSIONER SACKVILLE:   Please do sit down, Professor Lennox.  Thank you very much for coming.

PROF LENNOX:   Thank you.

COMMISSIONER SACKVILLE:   Ms Eastman will ask you some questions.

MS EASTMAN:   Thank you.  So you are Nicholas Gordon Lennox.


MS EASTMAN:   And you are a general practitioner and a professor at the University of Queensland.


MS EASTMAN:   And you prepared a statement for the Royal Commission.


MS EASTMAN:   Are there any corrections to that statement?


MS EASTMAN:   And the contents are true and correct, to the best of your knowledge and belief.

PROF LENNOX:   They are.

MS EASTMAN:   So your statement covers a range of issues.  And in the time available, we’re – we acknowledge the work that you’ve done in the statement on identifying barriers to access to health care.  But your particular interest and focus has been on some practical implementation strategies;  is that right?

PROF LENNOX:   That’s right, yes.

MS EASTMAN:   And so if we can focus on some of those issues, I think, in your evidence this afternoon.  But if you need to go back to anything that you’ve said about barriers to put a context around it, then we can do that.

PROF LENNOX:   That sounds good.

MS EASTMAN:   So Commissioners, this means that I’m going to try to make sure that we cover all of the key issues with Professor Lennox as he gives his evidence, but we may not touch on each and every point raised in the statement, if that’s convenient.


MS EASTMAN:   So can I just start by introducing you to the Royal Commission a little, in terms of your experience.  So you’ve been a registered general practitioner, with 35 years’ practice in medicine.  But you’re not currently working as a GP;  is that right?

PROF LENNOX:   That’s correct.

MS EASTMAN:   And the nature of your work as a general practitioner over 35 years involved what?

PROF LENNOX:   I spent about 10 years working as a general practitioner, and prior to that doing other roles, including a couple of years training to be a psychiatrist, and six months delivering babies, and other times doing developmental paediatric checks in special schools in Victoria, and working at student health.  So I’ve done a variety of things, worked as a GP.  Then in 1992, with the closure of the centres, the institutions in Victoria, they were seeking to establish academic centres, and one was established at the University of Melbourne and I applied for that job and got that job to work in – specifically focusing on the health of people with intellectual – or adults with intellectual disability.  That work involved focusing on doing research, teaching and providing clinical practice, but inevitably also necessarily involved advocacy as well.

MS EASTMAN:   And part of the advocacy work that you’ve done has involved you being a committee member and an immediate past president of the Australian Association of Developmental Disability Medicine.


MS EASTMAN:   Can you tell the Royal Commission a little bit about the Association?

PROF LENNOX:   So when I entered the – it’s a little bit of a long answer, I apologise.

MS EASTMAN:   That’s quite all right.

PROF LENNOX:   When I entered the area, what I found in 1992 is there was a – there has been a strong move in demedicalisation of the sector around the health population, and I – and so with the deinstitutionalisation they used money for medical offices to set up the centre of excellence at the University of Melbourne and at Monash University.  And there was a complete kind of pushing away of healthcare models for this population.  But when you actually looked at it, they had actually – people had never really sought what medical practitioners or general practitioners thought about working in this area.  In fact, there was only one study in Bristol in the UK.

MS EASTMAN:   I might have to ask you just to slow down a little bit.


MS EASTMAN:   Just so the interpreters can pick up what you say.  Thank you.

PROF LENNOX:   So there was – you know, there was very little known about this population – sorry, I’ve forgotten the stream of the question.

MS EASTMAN:   All right.  So about the Association.


MS EASTMAN:   So just a little bit about how there is now an Association of Developmental Disability Medicine, and what it does and how that ‑ ‑ ‑

PROF LENNOX:   So ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ and what your role has been.

PROF LENNOX:   Yes.  So we – over time with this pushback, there was a realisation amongst the few medical practitioners working in the area we needed to have a stronger voice and a focused voice because there were few of us involved.  So it was established, I think, in 2003, from memory, and the idea was to support the medical practitioners specifically that worked in this area, to try to connect those medical practitioners around Australia, to provide some leadership in terms of advocacy, provide support and direction in terms of research and, you know, that was kind of the nature of the organisation.  And it has done that over the years, albeit that it’s a very small organisation of, like, 40 or 50 members.

MS EASTMAN:   All right.  And at paragraph 10 of your statement you set out some of the research that you’ve been involved with over the past 28 years.  And one of the key aspects of your research has been the CHAP program.  And I want to ask you about that specifically in a moment.  But before I do that, just looking at the research and the work that you’ve done, it covers quite a broad range of areas, including such things as perceptions of GPs and psychiatrists on providing health care to adults with intellectual disability.  You’ve looked at ex-prisoner health research, and you’ve looked at the care of – health care of adults on the autism spectrum.  So can the Commission understand that the nature of your work has covered a range of different cohorts of people with cognitive disability?

PROF LENNOX:   Yes, but substantially focused on people with intellectual disability as a core focus.

MS EASTMAN:   Right.  And you’re doing some current research.  You’ve set this out at paragraph 11.  Without disclosing anything confidential, is there anything that’s a particular feature of your current research work that you wanted to share with the Royal Commission?

PROF LENNOX:   The – I guess Professor Trollor made a point, this second study, 11(b), refers to an NHMRC grant and we’ve been, I think, waiting for more than two and a-half years really to get going and getting permission to move this study forward.  And Professor Trollor raised this and this is a common problem.  So it would be that.  I guess the study number 3(c) is about this really crucial issue that has been raised already about the use of major tranquillisers, the inappropriate use of major tranquillisers in this population.  And this is a first little pilot study to try to seek change in this area.

MS EASTMAN:   So this is ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Where do funds come from generally?  Because with NHMRC you are presumably competing with other medical researchers for available funds.

PROF LENNOX:   Indeed.  And it’s very difficult to get NHMRC grants.  In fact, the CHAP study we will come to was the first NHMRC grant about the health of people with intellectual disability in that area that was ever funded.

COMMISSIONER SACKVILLE:   So where does the money generally come from for the important research projects that need to be conducted?

PROF LENNOX:   By people being successful in NHMRC, if it’s related to health and medical stuff.  Or ARC is the other area that I ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Australian Research Council.

PROF LENNOX:   Research Council, yes.


PROF LENNOX:   And then there’s bits and pieces of money in other organisations such as – this is – the number (c) is an Endeavour Foundation grant.  There’s an Endeavour Foundation research body that funds small grants, trying to get – then build information to them, so people can go to NHMRC or ARC to get grants.  But as you rightly said, this is a really competitive space.

MS EASTMAN:   So next in your statement you deal with the history of health service provision for adults with intellectual disability.  This starts at paragraph 13 and following.  Based on your work and review of the research over many years, at paragraph 18 you say that you consider that the situation – and I assume this is the present situation:

Demands increased levels of support for adults with intellectual disability, their families, paid and unpaid supporters and their health care providers.

And over the page you say that you’re of the view that there has been:

Limited, somewhat piecemeal and generally inadequate responses by various governments, which have failed to adequately address the systemic deficits in the health care provided to adults with intellectual disability.

So against that background, I wanted to ask you about this part of your statement, where you talk about some positive developments and initiatives and just to see how these two ideas fit together.  So you’ve identified piecemeal, limited and an immediate need.  But if we jump through to paragraph 36 of your statement, you also identify some positive developments. 

And one you identify in New South Wales, and that is in June 2018, the New South Wales government has an initiative where it has committed $4.7 million to expand specialised intellectual disability services, you identify the three new specialised intellectual disability health teams, and the establishment, among others, of two new tertiary mental health services.  So you’ve identified that.  And you haven’t really expanded on why this is a positive development.  So can I ask you to do that?  And how does this fit in with the criticisms that you make earlier in your statement?

PROF LENNOX:   Okay.  So the details of what we were talking about, Mr Simpson has explained, I think, in quite significant detail and he is much more knowledgeable on this issue.  In the way it’s contributed is that it’s picked up the need for increasing actual physical services for people with intellectual disabilities, and that are accessible, that provide specialist care and provide those throughout or partially throughout parts of New South Wales, as I understand it.  So they provide expertise, access to services.  They also, as I understand, provide some education and can facilitate ongoing research in the area, though that I’m less sure about.  These are all broadly positive things.  But, you know, the reality is, since Helen Beange did her work in 1995, we’ve been advocating this, and that’s 25 years ago.

MS EASTMAN:   This is a New South Wales government initiative.


MS EASTMAN:   And I asked Mr Simpson a short while ago whether he was aware of a similar type of service in any other states or territory in Australia, and I asked him – you may have heard the question of why does this need to be managed at a state or territory level and not a national level.  Based on your work and your research, and we will come to some of the strategies, are you aware as to whether any other states or territories have a similar type of model and, if so, what are the positive feature of the models of the other states and the two territories?

PROF LENNOX:   So the models that currently exist in other states are really Queensland, the former centre that I headed, which has now moved to more hospital-based and more of a mental health focus.  It provides – but it’s limited.  It’s one centre at one location.  It’s doing some great work but it’s limited.  Likewise, in Victoria, the centre in Victoria, the CDDHV, the Centre for Developmental Disability Health Victoria, was moved into Monash Health out of the university context and now providing services down there.  Both the Queensland and the – I think the Victorian example have decreased the amount of research they’re doing, as a consequence. 

So there’s the – those changes.  But they’re – you know, one in Victoria’s case quite a substantial huge population.  There’s a – so, you know, it’s just substantially inadequate, given the amount of need that’s out there, and the amount of the high levels of mortality, the unrecognised disease and poor disease management, the inadequacies of the systems which have been laid out by the two previous presenters and many before them.  There’s just not enough.  And New South Wales is leading the pack at the moment, to be honest.

MS EASTMAN:   Can I ask you this:  if you look at these initiatives, is there a risk that the focus of the services have been very much on large metropolitan centres, and not in rural and regional areas, where there may be a much smaller cohort?  Is there a risk that we start to create two-tier system depending on your postcode?

PROF LENNOX:   Absolutely.  I mean, you know, I think this is absolutely true, and you could criticise this with the Queensland centre because it’s based in Brisbane, of course, and it’s – there’s another problem here too.  Where do you get staff that are experienced and trained to work in these areas?  You know – and I don’t know what – you know, it’s easy – well, it’s not easy to get some funding but then how do you attract staff and maintain them that are actually skilled and supported in working in these areas.  So there’s another element as well.  But yes, I think it’s disproportionate in the metropolitan centres, there’s no doubt.

MS EASTMAN:   And I think we ‑ ‑ ‑

COMMISSIONER ATKINSON:   Well, sorry, that’s the question.  What’s the answer?  Where do you get the staff?

PROF LENNOX:   We will touch on that, actually.  I mean, I think ‑ ‑ ‑

COMMISSIONER ATKINSON:   Fair enough.  Thank you.  You’re doing Ms Eastman’s job.  She will be grateful.

MS EASTMAN:   All right.  I also want to ask you about the August 2009 Roundtable and the National Roadmap.


MS EASTMAN:   Sorry, 2009.  Sorry it’s getting late in the day.

COMMISSIONER SACKVILLE:   We’re back to 2009?

MS EASTMAN:   No, 2019, so August last year. 


MS EASTMAN:   So there was a National Roundtable.  You were involved in that?


MS EASTMAN:   And that’s going to result in a 10-year plan;  is that right?

PROF LENNOX:   That is correct.

MS EASTMAN:   And you have set out in paragraph 39 that you see this as a limited but first positive step in the right direction.  And you have identified the three areas, the short-term, medium-term and then the longer term being the three – the six to 10 years.  And you probably heard me ask the question about why is 10 years necessary.  And I pressed Mr Simpson on this, between overnight and 10 years.  And he took the compromised position, I think, of five.  Do you have a view on that 10 years?

PROF LENNOX:   Well, I rapidly looked at the plan when you asked that question.  And, I mean, Jim Simpson is correct;  you can’t do this overnight.  But, you know, we can certainly do it much more rapidly than 10 years.  And, you know, I almost happily will contribute to what Jim’s doing to try to see how we can bring these things closer.  But they’re – and in the further part of the submission I go through in detail into what I see is urgently needed.  And some of the things that are urgently needed they’re pushing out to 10 years.  This is – well, frankly, I find this obscene.

MS EASTMAN:   Well, you say in paragraph 40 that, in your view, the document does not respond urgently enough to address the deficits in health and health care and the systematic shortcomings of health and disability systems.  So that’s your observation in paragraph 40.  But are we to understand your evidence as to say if you are going to have a national plan, whether we call it a roadmap or policy, whatever it might be, that there are some key strategies that could be examined in the development of a 10-year plan, or something a little shorter, that pick up the matters that we’re about to touch on in your statement?


MS EASTMAN:   All right.  So shall we work through those matters.  So this, Commissioners, is paragraph 41 and following.  The first matter that you identify is health assessments and implementation.  And this takes us, I think, to what I wanted to ask you about a very important part of work – research work that you’ve done is the development of what is called the CHAP.  So can I ask you to tell the Royal Commission what is the CHAP, how did it come about and how has it been used to support health and access to health for people with intellectual disability?

PROF LENNOX:   Okay.  The CHAP stands for the Comprehensive Health Assessment Program.  And this came out of the realisation I had from Helen Beange and other people’s work in the mid-90s that there was a whole lot of things that this population that I had suddenly been looking at that were poorly managed, unrecognised.  But – but we knew about them and we know about other things in the health care system.  We know that you need to do pap smears and you need to do other checks and we do something about it.  But here we had a population of around 400,000 Australians, maybe more.  We knew that they suffered all this, and we were doing nothing about it. 

So it seems to me that there was – and I – that there was an easy way to do this.  And some of the key barriers, as are, of course, devaluing, but also communication.  And that’s true very much in general practice, as well.  So we did a whole body of work looking at what GPs were interested in, and talked to people with disabilities and their families and carers, and wondered how we could actually address this by putting in a strategy that really enhances communication, but also enhances the advocacy skills of families and people with disabilities in the system.  And there’s a whole lot of piloting which I won’t go on about. 

But, essentially, the strategy that we felt was most useful and was currently in favour in other groups, such as in the elderly population, is set up a form of comprehensive health assessment based in the community.  Now, people say it’s based on general practice.  Well, it’s actually not based in general practice;  it’s actually based in the community, because it requires people with intellectual disabilities and the families and those who support them to drive this process.

MS EASTMAN:   I might get you to slow down a little bit.

PROF LENNOX:   Sorry.  And so the notion of the CHAP is, really, as an advocacy tool and it’s also as an educational tool.  And what it endeavours to do is it endeavours to value people, it endeavours to gather the person’s health history.  Now, it’s fundamental and seemingly obvious, but if you come to see me as a medical practitioner and I don’t have a clear health story, then the decisions I’m going to make in terms of diagnosis and management are going to be poor decisions. 

And for the people with intellectual disability that I see and many people, they have major problems with communicating it or even recalling that information.  It’s not

uncommon to see somebody and say, “Where is your pain?  What pain do you have?”  And they say, “I’ve got a pain here.”  But for many people I can ask, “Have you had this pain a week ago?” and they can’t recall.  And that’s a major problem.  So the CHAP tries to gather a health story. 

It tries, in the middle of it, to say, “These are the things that are commonly missed in this population.”  Because the one thing I can tell you that medical practitioners don’t like, and other health practitioners, is missing things.  So it tries to say these are the things you could potentially miss and manage poorly.  And then it prompts them to actually think about the – what they should – what examining the person and what strategies they should take going forward.  And, penultimately, it actually has a sheet at the end of it that says, “Okay.  These are the things that you and I as the support person or the person with the intellectual disability or the parent, we’ve agreed needs to come out of this process.  And we’re going to – and you’re going to sign off that you will come back and get this done”, because this is where integration falls apart;  people ..... and don’t actually come back. 

And it also then provides health-specific information for medical practitioners or health service providers.  So it does a whole range of different things addressing some of the key barriers:  it gets a tick of entry that’s valuing, it actually gathers the health story and then houses communication.  The identification of health issues, those unmet health needs, in the piloting I found that, in fact, it was the families and support staff and that sometimes people with intellectual disability would read that list and go, “Here’s a credible tool, an authority, who is saying you really need to look very hard to make sure I’m not badly constipated, for example.”  So it became an advocacy tool.  And I’ve seen this happen in real life, where they’ll go along to the doctor and say, “Look, it says this is important. Why don’t you do something about it?”  So that’s the kind of – the nature of the process.

MS EASTMAN:   And in your statement at paragraph 46, you talk about the steps that should be taken, the six steps, to maximise the implementation of health assessments of this kind;  is that right?


MS EASTMAN:   All right.  And I’m just – just in the interests of time, can I note them, unless there’s something particular that you wanted to highlight in relation to those six steps.

PROF LENNOX:   Can I just highlight 46(e).


PROF LENNOX:   It’s been – it was implemented very rigorously in Victoria when the Victorian Government was – and this has been by actually auditing the process, and making sure that it happens and then returning to a service and saying, “Why are you not doing this?”  And this – the – a similar strategy has been put in place in the UK.  And they have done exactly the same type of thing in the UK, very effectively, to encourage implementation.  And we’ve heard implementation’s a problem.

MS EASTMAN:   Okay.  The next strategy which you identify is improving the gathering of vital health information and advocacy.  So you address this at paragraph 48 and following.  So this is using data such as the My Health Records to collect relevant health information.  But it’s also the adoption and implementation of what you describe as health diaries or passports.


MS EASTMAN:   What is the way in which you can implement the collection of health records that are going to be reliable and can contribute to continuity of care and access to health care?  So I’m asking you, yes, assume My Health is a good idea;  assume that a Health Passport is a good idea.  Assume, if they can be implemented and people with intellectual disability have these tools, how do we match that with what you call the importance of enhancing continuity of care?

PROF LENNOX:   I’m not sure that I understand the question, but I guess the way I’ve seen this – I guess the way of seeing it with the diaries and certainly even the CHAP, is that it actually builds relationship.  Both of these things provide an ongoing support to the person, so they have some certainty that they’ve got the health information with them and they’re being reviewed adequately.  But they also provide that to the medical practitioner.  And they – because of the shared time together, which is not focused on the acute presentation;  it’s focused on ongoing care, there’s a building of relationship and connectedness.

MS EASTMAN:   That’s a – that’s really what – and I’m sorry if I didn’t ask that question clearly.  There’s continuity of care.  If you have a GP who sees you from cradle to grave, assuming the GP can outlive you.  But what we have heard in the Royal Commission is that many people do not see the same medical practitioner on a regular basis.  We’ve had some evidence that that occurs.  But we’ve also had evidence that where access to health care might go terribly wrong is where you’re seeing different practitioners and also in different contexts.


MS EASTMAN:   So if there is a Health Passport or there’s a My Health Record and you’re looking at a continuity of care supported by that type of information, how will that improve the outcomes for people who might have to go to their local clinic and they might see a different GP each and every time that they turn up?

PROF LENNOX:   It really improves the outcome, because it ensures the crucial information about the person sitting in front of you at the time you need it is there as a medical practitioner.  So it’s very important.  Most doctors will look at this summary when you first come in.  They want to know if you’ve had melanoma in the past.  They’re not much interested if you had a cold last year.  So it’s teasing out the key information.  And that – without that information, mistakes occur.  And I’ve identified a couple of cases where that’s occurred in – I’ve seen in clinical practice, where things have been done because loss of information has occurred.  And it’s a very powerful strategy.  So it will improve that continuity care. 

And then there’s the issue of medication and making sure – because medication is incredibly dangerous used inappropriately.  And by making sure the medications are up to date and accurate for that person, you can prevent a lot of mishap occurring to the person.

MS EASTMAN:   And you deal in your statement, also, with health care and the need for a disability facilitator.


MS EASTMAN:   And this is part of your evidence that addresses the experience of people with very complex needs, both physical, cognitive and psychosocial;  is that right?


MS EASTMAN:   And so what do you mean by a facilitator?  What would that person’s role be and how might that make a difference in terms of either health outcomes and/or access to health services generally?

PROF LENNOX:   So I’ve seen a couple of circumstances where this has occurred.  And these are usually, as I’ve argued in the physical health space, a health-trained person, such as a nurse, who has a clear understanding of some of the disability issues and some of the risks that are occurring.  And what I’ve seen is that they will understand and advocate and communicate that within the health care system, whether it’s in the primary health care system or in the hospital system, and liaise with those systems to ensure those – that key information, but also key advocacy to get services, occurs. 

They come into the system, as I argue, with some level of status and knowledge and expertise to empower them within the system.  And, as I’ve put in this document, they need to be in a powerful enough position to question when wrong decisions are being made and advocate in a powerful way.  So that’s the type of thing that I think we absolutely need.

MS EASTMAN:   Are there any such facilitators who do a job with the status and with the skills and responsibilities that you’ve just described?  Do they exist?

PROF LENNOX:   They have existed.  And I do know they exist in – certainly in New Zealand, because I’ve had recent experience there.  But I’m not – and others will – may know this.  I don’t know.  There has been groups in New South Wales over the years, not well supported.  Whether there’s others in other states, I’m actually not sure at the moment.

COMMISSIONER ATKINSON:   And who would employ them?

PROF LENNOX:   Under that New South Wales model, I think – and I don’t know for sure, but they’re – I think they’re going to be employed within that New South Wales model.  So it would depend.  You know, my – the models I’ve driven – sorry.  I’ve described – I’ve promoted in the past have had them supported by centres of excellence because we had centres of excellence in Queensland and New South Wales and in Victoria.  And they would go out and provide community support. 

So they’re employed by the centre of excellence and be supported and facilitated and then go out in the community and work with people with complex health care needs in the community, so that they’re facilitating general practice care and empowering general practitioners, but also empowering families to give good service.  So that was the model I’ve written in the past.  So that was State Government through centres of excellence.  But I don’t see why – I don’t know whether the Commonwealth would be part of that in the current structures, but ‑ ‑ ‑

COMMISSIONER BENNETT:   Part of that’s about changing culture, what you’re talking about ‑ ‑ ‑

MS EASTMAN:   Commissioner, you may need just to move your ‑ ‑ ‑

COMMISSIONER BENNETT:   Sorry.  Part of what you’re talking about is changing the culture of practitioners to respect some expertise or knowledge that they may not have.  In paragraph 76 you’ve said Australian trained practitioners who specialise in the area of health and adults with intellectual disability feel no clear career path and little support, and often have no practice position, so it doesn’t make it an attractive career option.


COMMISSIONER BENNETT:   That’s what I’m reading into it.

PROF LENNOX:   It is.  Yes, absolutely.

COMMISSIONER BENNETT:   Is there a network – there’s people like yourself, we’ve heard from others.  Is there an established network of medical professionals, doctors and nurses, GPs to psychiatrists, that support each other, that go to conferences at the Gold Coast, perhaps, or whatever it is that doctors might do, but is there a network in which you – you can set – I mean, oncology and nurses, they attend professional support and conferences and networks.

PROF LENNOX:   So AADDM, the Australian Association of Developmental Disability Medicine, really is – that has a conference.  That tends to be people who are involved in adult care  The paediatric group, the paediatricians, developmental paediatricians and general paediatricians work – have two groups, in fact.  They have the – a group through the College of Physicians in child health and there’s another group called the NBPSA, the Neuro-behavioural Paediatric Society of Australia, which meet regularly.  So there is those groups.  And there’s also a group of nurses who meet, and I don’t know what the acronym stands for, but it’s called PANDDA, and I keep getting it wrong.  So there is groups.  AADDM, as I mentioned, is quite small and PANDDA is relatively small as well.

COMMISSIONER BENNETT:   So it’s not enough professional support for ‑ ‑ ‑

PROF LENNOX:   It’s incredibly inadequate, particularly if you compare it with other countries that are much more progressive in this area, such as in the UK or in the Netherlands, where there is a specialist training scheme for adult physicians in intellectual disability.  And you’re talking about 250 specialist physicians in that area in the Netherlands and, it’s hard to know, three or 400 psychiatrists in the UK.  So we’re talking very small numbers of people that are focusing in this area in Australia.  And most are actually part-time or like me, semiretired.  And just doing bits and pieces, really.

MS EASTMAN:   Just while we’re on this topic.


MS EASTMAN:   And I might jump to the question of having a disability specialist workforce.  So this is at paragraph 71 and following, and you’ve identified two countries who have specialist medical practitioners who are both trained and supported to work with adults with intellectual disability, being both the UK and the Netherlands.


MS EASTMAN:   And I think you’ve touched on that.  In your statement you say you favour the Netherlands model.  This is paragraph 75.  And you say that that model would best serve people with intellectual disability.  Why, and what is it about the Netherlands model that you think would be an appropriate model in Australia, or aspects of that model to be appropriate in Australia?

PROF LENNOX:   Because as we’ve heard, there’s a whole lot of – and there’s people with intellectual disabilities have – often have complex health care needs and not – often they’re both in the physical health care area and, you know, also in the mental health care area.  We have in – one group I missed mentioning was a special interest group in psychiatry within the College of Psychiatrists.  But if you’ve got people with complex physical needs then it seems only logical that you have physicians that are trained in both the physical and, to some degree, the mental health aspect.  So that’s why I favour that model.  I also, as – have spent a bit of time in the Netherlands and in the UK, and they’ve grown this model of – what I’ve seen is they’ve attracted enthusiastic young physicians to work in this space, and there’s a sense of kind of incredible positivity in working in this space, and a desire to do research and to improve what they’re doing.  I’ve seen this kind of enthusiasm that attracted me greatly to that model.

MS EASTMAN:   What was the impetus for that?  We’ve talked during the course of today and some of the evidence about the importance of value and attitudes.  What’s the impetus for this very positive attitude that you’ve observed in the UK and the Netherlands?

PROF LENNOX:   There’s a long history of this and some of it is because of the – it is really about what existed before and what they could build on.  In the Netherlands they were very heavily institutionalised, and they realised they had a – they needed to deinstitutionalise.  And as I understand it, and I may have this wrong, but I am told that in fact the Prime Minister of the Netherlands had a child with Down syndrome, and saw that there was a need for enhanced physical health care.  So rather than remove all the physicians from these places they changed them, from moving them out of institutions, to developing this training scheme.  So there was a political will to do it, and also a recognition that we had people with complex physical and mental health needs and we needed to have this group of physicians.  And they cherry-picked, I suspect, the best people to model provision of care that set up the training scheme for these young physicians and attracted these young physicians to this process and, to me, they were the players in the system.

In the UK, this goes back, I’m told, a lot further.  In fact, it relates to a speech in the 1960s by Enoch Powell which recognised within mental health that people were in institutions and we need to deinstitutionalise, and many of us will remember this time of deinstitutionalisation.  And people with disability and in the training scheme were kind of swept up in this process and – as was the psychiatrists involved in that care and the development of the strategy.  So it came out of structural changes that were occurring, the services of people with intellectual disability were swept up into that – were occurring through the broader mental health framework.  Hence, you’ve got a specialty training in what’s called learning disability psychiatry .....

COMMISSIONER SACKVILLE:   Was it easier to do this in the United Kingdom because of the way the National Health Scheme works?  As distinct from the way we provide medical services.

PROF LENNOX:   That’s a very good question.  I wish I had the answer to that question.  I suspect the answer is yes, actually.  I know it’s slightly related topic, when we look at the Medicare item for the health assessment process that I’ve already talked about, that when we generated – the government announced in 2006 a specific Medicare item for people with intellectual disabilities, health assessment, and then Minister Roxon in 2009 collapsed all those Medicare items into a generic Medicare item.  I was told by the senior people in the federal health department that Medicare is not about collecting data.  So they were just going to do it and it was easier to do it this way.  I suspect if you were in the NH health system that they may see that they actually do have some role in collecting data and following the health of a disadvantaged group.

MS EASTMAN:   Can I go back a little bit now to education and enhanced advocacy.  And you say in your statement at paragraph 59 that embedding education within the context of everyday clinical practice when a patient is consulting the practitioner and the information is implementable and useful would be a more likely change in practitioner behaviour.


MS EASTMAN:   So I want to ask you a little bit about that.  And you talk about the importance of embedding education and training, but you observe that a survey back in 1995 of Australian medical schools found, on average, that for the whole of the medical course, 2.5 hours of education was devoted to the specific health needs of people with intellectual disability, and you say:

This statistic had not increased significantly for a more recent audit in 2013 to 2014.

So the Royal Commission has received some information from some of the colleges about their curriculum, and about the extent to which education in relation to people’s health needs, being people with intellectual disability – we’ve got some information.  But we’ve heard quite strongly over the course of the past week or so that education and training is an important area.  Some have said, “Don’t wait, educate people who are already in practice”, and others have also emphasised the importance of new medical graduates and, as you put in your statement, allied health and nursing, to be educated as part of undergraduate and postgraduate work.  So I want to ask you about the practical mechanics of what the nature of the education should be, and what are the difficulties of having an effective education program at all levels, be it both entry level undergraduate, through to ongoing education.  That’s a massive topic.


MS EASTMAN:   And you might say this should be something that the Royal Commission should look at separately, but you’ve touched upon this and you’ve identified in your statement a few examples where there are some online programs ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ and training available.

PROF LENNOX:   Okay.  So firstly, the embedding – the first part of that question was about embedding education into practice.  And it’s one of the things I like about the health assessment process is actually the patient, which is what we call people who come and see us, is sitting in front of me and it says to me, “think about this”, and that – if you looked, as I did in my PhD work, which was around this, part of it was looking at what actually changes practitioner behaviour?  Does it going to a didactic lecture?  No.  Is it actually having something that you’re doing on the day-to-day basis that confronts you and says “think about this”, more likely, was the answer. 

So that’s why I made that statement saying that that’s probably very effective.  There’s – there’s – so – and there is a whole body of literature, which I’m not entirely across, around adult learning in professional practice, and I would welcome that any of the initiatives that Jim Simpson mentioned, that they looked at this literature and embed it.  So that’s that aspect.  In terms of medical courses, look, the very point that I’ve heard now on a couple of occasions during the Royal Commission, we have endeavoured to embed people – and people with intellectual disabilities as lecturers, as tutors in our course.  And we’ve done this many times – or parents or other, you know, people.  So we’ve got the distinct voice in front.  And it is incredibly powerful for medical students. 

Medical practitioners are in practice.  It is a little bit of a challenge because they are so set in to what they are doing, but I think they need to be a central voice in anything that is done.  I also am very keen that I don’t see any implementation that comes out of this process and hopefully the positive gains that you can generate through the Royal Commission that is not just not doing education for the sake of doing education, because there’s a lot of money being used to do various education initiatives that probably go nowhere, really.  And I think we need to have some real rigour about this because we’ve got limited capital and we possibly can change people’s attitudes and beliefs, but I think that we need to really evaluate and make sure we’re actually being effective.

The other thing I would like to say, my experience being at two universities, the University of Melbourne and the University of Queensland both, is that at some times we’ve been allowed to implement a more ideal model of having people with intellectual disability doing the teaching, and other times we’ve had our teaching cut without even being consulted.  And it’s appalling, frankly appalling that this happens.  And it’s not just the universities I’ve nominated.  This is across Australia.  There is such pressure on time for teaching medical students.  And the postgraduate thing, I think, pertains to, you know, doing things that are embedded in practice and providing for practitioners a range of possibilities of learning, because we all learn in different ways is the essence of it.

MS EASTMAN:   All right.  Can I turn to what you say about Centres of Excellence ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ on health, and perhaps deal with the observations you make about research together.  Would that be convenient to deal with the two topics together.


MS EASTMAN:   So ‑ ‑ ‑

PROF LENNOX:   I’m not sure what the research together is, but ‑ ‑ ‑

MS EASTMAN:   Well, my understanding when you talk about Centres of Excellence for health is that you’re looking at an integrated approach but support for a Centre of Excellence is that it’s also underpinned not only by clinical work but also by research;  is that right?

PROF LENNOX:   Absolutely, yes.

MS EASTMAN:   So what you talk about in terms of research in paragraph 80 and following is part of identifying and establishing centres of excellence in health.  So that’s what I mean by dealing with them together.  So in terms of what’s presently available in Australia that would meet that definition of Centres of Excellence, what is there in Australia at the present time that brings together both the clinical experience and the research work?

PROF LENNOX:   There’s Professor Trollor’s centre which is a focus on mental health, and there’s a – the Mater Adult Intellectual Disability and Autism Service, which formed out of my – the centre that I formerly headed, the Queensland Centre for Intellectual Disability and Developmental Disability.  And they are doing some research.  It’s less now, since they’ve moved more into the mainstream health care system.  There is – the Queensland Centre For Intellectual and Developmental Disability currently exists, but doesn’t have any core funding;  it just has a couple of positions.  There’s also a centre in – at Monash – in Monash Health in Victoria.  And I’m unclear as to how much research they’re actually doing, but they’re very much embedded in the health care system.

COMMISSIONER SACKVILLE:   In what sense are you using the term ‘Centre of Excellence’, because there are programs for universities where Centres of Excellence are set up or maintained as a result of grants from the – as I understand it, through the Commonwealth?  Is this the same concept or are you talking about something different?

PROF LENNOX:   I think it’s conceptually similar, but it’s not through the Commonwealth.  These Centres of Excellence were set up from State Government.  And the politics behind the setting up of these centres was driven by state disability services substantially.  They were not federal.


COMMISSIONER ATKINSON:   Now, I looked for those MOOCs that you mentioned.


COMMISSIONER ATKINSON:   And I found one at the University of Queensland.


COMMISSIONER ATKINSON:   There were a couple, actually.  And one of the instructors is you.


COMMISSIONER ATKINSON:   So these are the kind of online programs people can do.

PROF LENNOX:   Yes.  Absolutely.

COMMISSIONER ATKINSON:   But you have to pay $89, if you want a certificate.

PROF LENNOX:   If you want a certificate.  You can audit it for free.



COMMISSIONER SACKVILLE:   This is precisely the kind of research that jurors are prohibited from doing.

COMMISSIONER ATKINSON:   Yes.  But Royal Commissioners are encouraged.  But these are the kind of things that any general practitioner could do, any allied health ‑ ‑ ‑

PROF LENNOX:   Yes.  They could do them.  In fact, the interesting part of that MOOC is that the – all of the videos are actually creative common.  So you can download them and construct yourself a course.

COMMISSIONER ATKINSON:   I won’t do it now.

PROF LENNOX:   No.  But if – some speech pathologists, for example, that run university courses have taken videos and constructed a course.  And other centres can do this, as well.  They have incredible penetration.  We’ve got tens of thousands of people enrolled in that course.


PROF LENNOX:   Yes.  Well, over the course the time the course has – 7000 this year.  So this was – last time I looked, which was two years ago, it was 14,000 had enrolled.  But, you know, that course, to be honest, is not totally appropriate for GPs.


COMMISSIONER SACKVILLE:   Ms Eastman will now interrupt the Commissioners.

MS EASTMAN:   Just on the centres of excellence ‑ ‑ ‑


MS EASTMAN:   ‑ ‑ ‑ you have noted in your statement that the state disability services departments have been the drivers for the past 30 years.


MS EASTMAN:   But this is one of the elements identified in the National Roadmap;  is that right?

PROF LENNOX:   That they have been identified.  I wasn’t aware that it was identified in the Roadmap but perhaps it was.

MS EASTMAN:   All right.  So paragraph 78.


MS EASTMAN:   You say:

The National Roundtable (key element A10) ‑ ‑ ‑



‑ ‑ ‑ Recognises the importance of a network of Centres of Excellence, but pushes this focus into the six to 10 years in the future range.

So I’ve assumed this is a reference to the roadmap developed in August last year.


MS EASTMAN:   And the three areas of short-term, medium-term and long-term.


MS EASTMAN:   So you identify the maintenance of existing Centres of Excellence and the development of a national centre as something that is one of the priority areas, but you say this is going to be an area that’s pushed out for six to 10 years.


MS EASTMAN:   If there are existing Centres of Excellence that are not being funded or will not be funded on an ongoing basis by state health or disability services, what is the point, frankly, in working to develop a centre of excellence or a network of them in a period of six to 10 years?

PROF LENNOX:   There’s no point.  The expertise will go.  It’s hard enough, as one of the Commissioners, I think, picked up, to maintain staff when there’s no career.  And if you push things out to six to 10 years, you will end up with a greenfield site, which is what I experienced back in the early 90s, with no – having to get people who are – who are completely inexperienced and untrained in this area, yet again, creating something new.

MS EASTMAN:   Why couldn’t this be something that’s done immediately?

PROF LENNOX:   I have no – the only reason for not doing it immediately is it would cost money.

MS EASTMAN:   Right.  The last thing I want to ask you about is paragraph 79 of your statement, which is a National Centre and a National Strategy.  And so, against the proposed new 10-year plan, we’re working towards having a national approach;  is that right?


MS EASTMAN:   Is there anything specifically in the elements of the model that you identify in paragraph 79 – so you start at subparagraph (a) through to (m) on the following page – that you wanted to raise with the Royal Commission?  And then you might be very pleased that that’s the final question that I have for you, but the Royal Commissioners might also have some questions.

PROF LENNOX:   I guess the – I’ve suggested a number of strategies that I’ve come up with.  And part of the – well, you see is it’s heavily built around audit and making sure things happen and having accountability built into it.  I think these things are the way we should go.  And, as I argue in the last paragraph of this submission, if there was any other population experienced the health status of this population, we would have a national response.  And it begs the question as to why don’t we?  And this is, I think, infinitely doable. 

But we need to make sure it happens, because, as you explored with Jim Simpson, we’ve gone on and on and on for years and getting no substantial response.  So I just would emphasise that we need measurement.  And we need commitment of dollars and accountability for dollars for this population.  Otherwise, we will be here in another 30 years’ time.

MS EASTMAN:   Thank you, Professor Lennox.  Commissioners, do you have any further questions?

COMMISSIONER SACKVILLE:   I would invite Professor Lennox, perhaps, to read paragraphs 83 and 84, if you would like to do so.


People with intellectual disability represent approximately 1.86 per cent of Australians.  They experience early mortality, avoidable deaths, high levels of unrecognised and often poorly managed morbidity, inadequate health care delivery, health screening and health promotion, yet we continue to passively endorse this situation.

COMMISSIONER SACKVILLE:   And 84, if you wish.


No other group would be subject to this neglect and not demand a national concerted and systematic response.  Indigenous Australians experience very substantial deficits in health and health care and have a national strategy with publicly released outcome monitoring.  The poor health and health care of people with intellectual disability should and would not be tolerated in Australia in any other population group without some national action and implementable strategy.


PROF LENNOX:   Thank you.

MS EASTMAN:   Thank you, Commissioners.  That closes the evidence for today.  And we’re very grateful for Professor Lennox’s assistance and the very detailed statement that he has prepared.  And thank you very much for your time this afternoon.

COMMISSIONER SACKVILLE:   And I add our thanks, too, Professor Lennox, for the statement and your evidence and all the work you have done in this area.  Thank you so much.

PROF LENNOX:   Thank you.


<THE WITNESS WITHDREW                                                                                                                    [4.13 pm]


MS EASTMAN:   So can I formally tender the statement and it be marked as exhibit 4.21.  And that will include Professor Lennox’s CV, behind tab 15 in part B.


COMMISSIONER SACKVILLE:   Thank you.  Do we resume at 10 o’clock tomorrow?



MS EASTMAN:   Yes, thank you, Commissioners.

COMMISSIONER SACKVILLE:   And what will happen tomorrow?

MS EASTMAN:   I’ll tell you in the morning.


COMMISSIONER SACKVILLE:   All right.  Well, if we feel like it, we’ll come back at 10 o’clock tomorrow.

MS EASTMAN:   Thank you.