Thread by @PWDAustralia

If you missed the #DisabilityRoyalCommission Hearings yesterday, here's some coverage of what was discussed:

abc.net.au/radio/programs…

theaustralian.com.au/nation/doctor-…

macleayargus.com.au/story/6649365/…

Today's hearings will commence shortly.

Once again, if you wish to mute coverage of the hearings we suggest muting:

#DisabilityRC
#DisabilityRoyalCommission

and please remember to take care of yourselves and each other.

support is available, resources here: pwd.org.au/drc-hub/suppor…

We should be tweeting along all day, with @FrancesPWDA joining in this morning and @bluntshovels in the afternoon.

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Today's witnesses represent the government, health system and NDIS. They won't be commenting on specific stories from individual witnesses, but will be responding to the broader themes that have come up during this hearing.

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Senior Counsel Assisting Ms Eastman SC explains that this topic is huge and we probably won't be able to cover everything comprehensively - these witnesses will likely be returning in future hearings.

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The first witness is Dr Nigel Lyons, representing NSW Health.

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Ms Eastman asks if there's one person responsible for people with cognitive disability in the NSW Health system. Dr Lyons says the Secretary of NSW Health is ultimately responsible, but there is no designated position that deals with that area exclusively.

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Going into how the overall system works. Each Local Health District in NSW has its own Board and Director. They are responsible for complying with the overall policies of NSW Health, but they implement those policies separately at the local level.

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Ms Eastman asks about audits and assessments. Dr Lyons says there are a range of ways to check each district is following policies, including complaints systems.

Ms Eastman asks what happens if a Local Health District isn't complying with policies.

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Dr Lyons says if there are concerns about a district, NSW Health increases the level of monitoring of that district. Response depends on the pattern of complaints and incidents, whether it's widespread or localised.

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We lost sound on the stream for a minute there, but it looks like they're still talking about assessment methods.

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Ms Eastman asks about issues relating to people with cognitive disability in that context. Dr Lyons says they need more data - they don't currently track people with cognitive disability specifically.

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Ms Eastman asks if NSW Health data could be matched up with the independent research the Commission has heard about so far. Dr Lyons says that's probably not possible with their current data, but they are aware of the research and responding to it.

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Chair asks about innovation, pilot programs etc.

Dr Lyons is going through a number of initiatives quite quickly.

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Ms Eastman is now going to ask about several NSW Health policies that seem particularly relevant to cognitive disability.

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We're getting a slightly fragmented feed but she's now asking about a specific document which Dr Lyons says he hasn't personally reviewed.

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https://twitter.com/FrancesPWDA/status/1232811790431481856

Ms Eastman asks about another policy, Dr Lyons says it's no longer enforced. Ms Eastman asks why it's been included and he says "It's still a policy."

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Moving on to a policy about responding to people with disability during hospitalisation. Dr Lyons says he is familiar with this one but prefers not to answer questions without a hard copy in front of him, so we'll come back to that one.

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Commission asks about intersectionality and Dr Lyons says it's a work in progress.

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A round table from 2018, including representatives from the mental health branch of NSW Health, produced a document called a Joint Communique. Ms Eastman asks about the time-frames in that document, as brought up by Jim Simpson earlier in the hearing.

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She also asks Dr Lyons about the 24 recommendations from that document. He says none of them have been fully implemented but action is ongoing.

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Dr Lyons says there has been substantial progress on many of them.

Ms Eastman asks about part of his statement that says "fully or partially implemented" - why say that if it's actually all partially?

Lyons: It depends on your interpretation. Some are very close.

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On reflection, Dr Lyons agrees that his statement should just say "partially."

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The recommendations in the joint communique are voluntary, but NSW has broadly accepted them.

Ms Eastman asks if any of them are priority areas, or if NSW is waiting on the national roadmap.

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Dr Lyons says action on many of the recommendations is quite advanced.

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Ms Eastman asks if, despite missing the time-frames in the communique, NSW is committed to these recommendations. Dr Lyons says these are separate things.

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He says that for example the intellectual disability mental health teams are about a month away from being operational.

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Ms Eastman asks about the short and medium term initiatives in the national roadmap.

Dr Lyons talks about existing initiatives.

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Ms Eastman clarifies that she means NSW's responses to the roadmap, and Dr Lyons repeats that there are things in the roadmap NSW is already doing.

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Going back now to the NSW Health policies after hard copies have been turned up to refer to.

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Talking about the NSW Disability & Inclusion Action Plan - which we believe is this? health.nsw.gov.au/disability/Pag…

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Dr Lyons was not involved in drafting it and is not personally responsible for implementing it, but his team does regular reports on the progress of Local Health Districts in implementing it.

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Ms Eastman asks about the term "person-centred care". Dr Lyons says it's about contextualising healthcare to individual circumstances, acknowledging that not everyone is the same.

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He gives the example of deciding if something should be done in hospital or the community, depending on someone's personal circumstances.

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He says the healthcare system continually strives to do that more effectively, and when there are complaints it's often about the failure to do this, because the field often prioritises a scientific approach.

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He says the importance of person-centred care needs to be continually reinforced and failures addressed, and it's a constant challenge.

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Ms Eastman asks for a practical example of a person-centred care approach for a patient with Down Syndrome in an emergency department.

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Dr Lyons says it might start with allowing a carer or family member into the clinical space for the assessment. He also refers to speaking to the person and not their carer, although that doesn't sound person-centred to us so much as what should be standard care.

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Ms Eastman asks for anything non-communication-related. Dr Lyons says reducing anxiety by having a carer or someone familiar there to support them.

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Eastman: What specific measures throughout the life of this strategy have been implemented?

Lyons: Our actions to make health care person centred don't just come out of this trategy.

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Chair Sackville asks Dr Lyons to answer the question.

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Ms Eastman repeats - what has come out of this policy specifically?

Dr Lyons says there is no direct relationship between the policy and the actions.

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Goes back and forth a few more times and Dr Lyons says he'll have to get back to the Commission with a specific answer.

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Ms Eastman asks if there have been annual updates as the policy sets out.

Dr Lyons hasn't seen one recently, but they normally talk about progress according to actions in the plan, with examples of implementation.

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Chair asks who the most senior person in the department is that has policy responsibility in relation to cognitive disability. Dr Lyons says it's him.

Commission is a bit skeptical about his preparedness for this hearing.

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Moving on to the Service Framework to Improve the Health Care of People with Intellectual Disability. Dr Lyons says he's not immediately familiar with the document, although he is responsible for parts of its remit.

health.nsw.gov.au/disability/Pag…

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Ms Eastman asks if this document from 2012 has had any reviews or updates, Dr Lyons says he isn't aware of any but he's only been in his role for 3 years and might not be aware of reviews/updates from before that.

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Ms Eastman asks about an advisory group referenced in the document.

Dr Lyons says this framework has been subsumed into NDIS rollout. So... no advisory group?

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He says there have been regular meetings with FACS, Education, etc, about what the NDIS implementation means for healthcare, which incorporates this framework.

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It is unclear whether this is meant to function as a replacement for the advisory group mentioned in the document.

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Chair asks what the NDIS has to do with the quality of healthcare delivered in hospitals to people with intellectual disability.

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Moving on to evaluation strategies as set out in the Framework document. Have they been implemented, asks Ms Eastman?

Dr Lyons would like to take that question on notice, and instead talk about the intellectual disability hubs he keeps trying to bring up.

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The Commission sounds deeply unimpressed with Dr Lyons' question-answering skills.

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Ms Eastman shows Dr Lyons an evaluation document and asks if the data related to performance indicators and outcomes mentioned in it has been collected. Where can we find a report with this info?

Dr Lyons says that happens at the local health district level.

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Dr Lyons does not know if this information is available - he'd have to go back to the Local Health Districts and ask for it.

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Ms Eastman says it sounds like the type of information that should come back to a central point for whole-of-state data analysis.

Dr Lyons comes back to their systems not allowing identification of people with ID in their data. He says it's a problem.

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Commission: What are the implications for good planning if there's no good data?

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Dr Lyons: It creates a challenge, but it's not the only thing you use to assess what needs to change in service delivery.

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He says they can use local surveys and external research, but there certainly is a gap.

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Lyons: Department has been advocating for connecting the systems in disability care and the systems in healthcare to fix this problem.

[Is that the most efficient way to fix the problem?]

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Also, why get that data in such an indirect way? Isn't that an extra layer of complexity? #DisabilityRC

https://twitter.com/FrancesPWDA/status/1232836401554571264

Agency for Clinical Innovation document presented. It wasn't part of NSW Health's submission because they have some kind of semi-independent status? There's some technical policy discussion happening about what is or isn't a policy.

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There are 10 guiding principles in the document, and Ms Eastman asks how they fit in with the guidelines in the other policy documents. Dr Lyons says they are consistent.

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Ms Eastman asks about implementation.

Dr Lyons mentions one hospital that uses it, but says ACI creates tools and resources that anyone across the system can use, and he wouldn't necessarily be aware of it.

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This is the document in question:

https://twitter.com/CIDvoice/status/1232837794180915200

Ms Eastman asks if any of these policies are available in Easy Read format. Dr Lyons says he'll take that one on notice. Ms Eastman mentions that the Commission did specifically ask NSW Health about this beforehand.

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For anyone who isn't familiar with this terminology, since it's being used a lot today - "on notice" means they'll look it up and get back to the Commission after the hearing.

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Ms Eastman asks if Dr Lyons has done any training relating to healthcare for people with cognitive disability. He says not recently.

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https://twitter.com/FrancesPWDA/status/1232839842943266817

Ms Eastman has finally gotten to the intellectual disability healthcare hubs that Dr Lyons has clearly been eager to talk about this whole time. Dr Lyons says they've had very positive feedback from patients, carers and family.

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He also notes that the department wants that expertise to be available across the state and at a systems level, not just in the three spots where they've been operating.

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The hubs have been networked in to surrounding districts through specialist nurse consultants who can liaise with the hubs.

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Ms Eastman asks how these hubs are being evaluated. Dr Lyons says an evaluation program is being developed alongside the next phase of the hubs.

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Ms Eastman asks about rolling out successes throughout the state. Dr Lyons says there aren't enough local specialists in some areas and that's a challenge. #DisabilityRC

Ms Eastman asks about the issue that's come up during this hearing repeatedly, in which someone's disability is listed as a cause of death on their death certificate. She asks if there are any policies that address this.

Dr Lyons takes the question on notice.

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Dr Lyons is done and after lunch we'll be looking at Commonwealth-level issues with three witnesses in a panel.

We'll be back at 1:30.

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We're back with a panel consisting of Tania Rishniw, Dr Andrew Singer, Simon Cotterell, from the Australian Department of Health.

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The Department is very large and divided into a number of groups and divisions. It also has a specific Aged Care Royal Commission taskforce, and one related to this Royal Commission as well.

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Ms Eastman asks if there is a person in Commonwealth Health with an exclusive and specific responsibility for the healthcare of people with cognitive disability.

Ms Rishniw says not exclusively, as it comes up within a number of different divisions.

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Mr Cotterell says primary care is seen as central and the 10-year plan regarding people with intellectual disability is being built with that in mind.

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Ms Eastman asks Mr Cotterell about the national roadmap to improve the health of people with intellectual disability, and the roundtable that happened last year.

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He was involved in writing a document that summarises the roundtable, which heard from a person with disability, some carers and some representatives of primary health networks.

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Ms Eastman confirms that everyone on the panel has been reading daily summaries of the hearing created by the Attorney General's department, and is familiar with the past discussion about the roadmap.

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Ms Eastman: Is it the expectation within the Department that this can be a turning point to address issues that have been known for a long time?

Mr Cotterell: Yes, we do see it as an opportunity.

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Ms Eastman asked what prompted the Commonwealth to create this initiative rather than leaving it to the states.

Mr Cotterell says Minister Hunt made a commitment after a meeting with @CIDvoice

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Ms Eastman asks, since the Roadmap focuses on intellectual disability, where does that leave people with other cognitive disability, such as autism?

Mr Cotterell: That would be considered by the Minister if people want to be included.

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Ms Eastman: Is there a risk that fitting e.g. autism into this model would cause you to reassess the appropriateness of this type of policy framework?

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Mr Cotterell: There will be a separate roundtable relating to dementia.

Ms Eastman: Could there be a separate stream for people with autism?

Mr Cotterell: Yes, but it would take some resourcing.

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Ms Eastman asks if any consideration has been given to autism in the context of the roadmap for intellectual disability, and Mr Cotterell says no, and he'll raise it with the Minister.

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The initial roundtable didn't invite State health representatives, but the next one in April will bring them to the table.

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Ms Eastman asks how Minister Hunt's announcement this morning of a $6.5 million investment in the Primary Care Enhancement Program fits in to the roadmap.

health.gov.au/ministers/the-…

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Ms Eastman asks what the community is likely to see in 2 years as a result of the Roadmap.

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Mr Cotterell emphasises that the current roadmap is still a draft, and timeframes will need to be confirmed.

Ms Eastman: Why would it take 10 years to develop centres of excellence?

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Mr Cotterell: They are currently funded by the states, who were not in the room when we created this roadmap. We'll need to discuss the proposal and its timeframe with them.

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Ms Eastman asks if that means it'll need funding contributions from the States and Territories. Mr Cotterell says not necessarily. They should keep funding the ones they fund, but Commonwealth might need to get more involved in new ones.

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Ms Rishniw says the Commonwealth isn't going to fund its own centres of excellence if something effective and robust already exists.

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Moving on to discussion of the Medicare Benefits Schedule, and things like longer GP appointments for people with cognitive disability.

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Mr Cotterell says raising awareness of new MBS items will be part of the Roadmap.

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We're taking a break but @bluntshovels is on the case! #DisabilityRC

https://twitter.com/bluntshovels/status/1232869053020033025

We're back! Ms Eastman is asking the panel about pailliative care, and whether there needs to be additional legislative change to go with the roadmap.

Mr Cotterell says he'll look into it - it's another area of shared responsibility.

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Chair Sackville asks about the role of the Royal Commission Taskforce in the Health Department. Ms Rishniw says it pulls together evidence for the #DisabilityRC since it's a large department and evidence is coming from a lot of different areas.

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We're now back from the quick recess

We're talking about the roadmap, and the creation of it. Cotterell discusses the roundtable that will occur.

They mention their intention to work with people with intellectual disability to build the roadmap.

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Eastman asks about how they will do this, noting that many people with intellectual disability live in group homes, insititutions. She asks how they plan to reach them.

The intention is there but the mechanics are not.

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Eastman asks about the inclusion of sports initatives in the statement provided by Commonwealth Health in regards to the hearings for health of people with intellectual disability.

Rishniw says they were trying to provide a comprehensive statement.

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Now onto the My Health Record and the Commonwealths role in supporting the health of people with intellectual disability.

Rishniw explains the purpose of the program. Eastman raises the ongoing theme of the hearings of lack of cohesion between specialists, etc.
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Rishniw says that it would help in those situations by keeping records together and standardised.

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Eastman raises the issue of accessiblity for people with intellectual disability. She raises the concern of people who might not be capable of opting out or placing restrictions of their records,

Rishniw responds saying they can nominate someone.

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Eastman pushes the question.

Rishniw insists that people would be able to nominate someone, and if they can't their guardian could take over.

Eastman responds, saying that this seems like an example of the very real barriers that exist.
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Eastman asks about policy regarding First Nations people with disability, and the National Aboroginal and Torres Strait Islander Health Plan.

Eastman asks about what the plan does for people with intellectual disability.
Rishniw says the plan is comprehensive

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A commissioner asks about juvenile detention, and early encarceration for First Nations people. She asks what the implementation plan inlcudes for this.

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That wraps up the evidence for that session. We now have a 4 minute break before the next witness.

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We're back!

We'll be hearing from Graeme Head, the Commissioner for the NDIS Quality and Safeguards Commission.

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He's took up the position in 2018.

Eastman asks a few questions about the creation of the commission and some of the logistics.

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The complaints function in the commission allows for anyone to file complaints about registered or unregistered providers.

People can file complaints about behaviour from providers, neglect

Mr Head says that people with disability are increasing as complainants.
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There's no data about how many of those complainants are people with cognitive or intellectual disability.

Sackville asks about the proportion of people using the NDIS who have these disabilities.

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Mr Head says they're present, they turn up, and they do a lot of work to engage with organisations and people.

They create resources such as easy read material.

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Eastman asks about anything specific that they have done to reach people with intellectual disability, and make the commission accessible to engage with.

Mr Head says they create a lot fo resources, campaigns to encourage people with disability to make complaints.
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Eastman asks about the audits in place to look at the complaint structures available in registered/unregistered service providers.

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We're talking about complaints. There's been over 2000 complaints, and over half of them have been about service providers.

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About 12% of complaints made were about abuse, neglect.

Eastman asks what this means. Mr Head explains that it can vary what is falls into these categories.
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Eastman asks about the overlap between reportable incidents and complaints.

Mr Head says yes, there can be overlap if something happens and family, carers, service providers report an incident as well.

There are over 2,000 complaints, but over 69,000 incidents
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The largest part of reportable incidents are due to unauthorised use of restrictive practices. A very large part of which are chemical restraints.

There's been an astonishing increase in the reports made about unauthorised use of restrictive practices.

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A Commissioner asks about the complaints process, pointing back to Mr Heads statement that they encourage people with disability to make complaints.

She says shes's seen support workers who have noted the risk of losing their jobs if they file a complaint.

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We're now talking about reported deaths. Eastman asks about whether the commission looks at preventable deaths.

Mr Head says there are processes where if they believe there needs to be an investigation, they can work with coroners, police, etc.

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They don't get reports of deaths outside registered providers.

Mr Head says unregistered providers are usually self managed, and usually don't provide support where there is a lot of risk.

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The service providers are meant to provide information about the death. Priority in the first report is to ensure that providers are doing everything in their power to manage the situation.

They have to report a second report 5 days later.

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Eastman asks about the practice that exists for the NDIS to contact the family after a death. Mr Head says he hopes the service provider would contact the family.

Says if they need further investigation, then usually the NDIA will reach out.

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He says that if there is no cause for concern (as in further investigation), then he isn't sure whether families would want to hear from the Safeguards Commission.

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Eastman asks about using data to tackle preventable deaths.

He says 'the commission is action orientated around these important issues'

They commissioned Prof. Trollor (who gave evidence earlier this week) to look into preventable deaths and care.

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Mr Head says they also receive reports about other serious incidents and this can signal to them about different behaviours or patterns.

He says this can also help flag problematic environments, preventing further deaths.

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Eastman asks about the transparency of the commission and the data they receive.

Mr Head says the're very transparent, releasing data and reports soons after they began work, and will remain to do so. They want to change things.

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One fo the Commissioners asks about whether deaths that happen under the care of the health system (like many we have seen in the hearings these past two weeks) are reported to the NDIS Commission.

Mr Head says that they're beyond his jurisdiction.

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There was a question about reportable deaths, and the fact that there are a number of deaths to people who live in group homes, institutions, may not get the same care and whether they are reported.

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Galbally asks about community visitor programs

Mr Head says they play an important role. He talks about taking the programs that exist and working with them.

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We've now wrapped up, and that is it for today.

We'll be back again at 10am tomorrow (as always).

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