Thread by @PWDAustralia

Good morning!

The 3rd day of the #DisabilityRC health care hearings will begin shortly.

We'll be live tweeting the hearings all day using the hashtags
#DisabilityRC
#DisabilityRoyalCommission

The livestream can be found here:
disability.royalcommission.gov.au

and we are now in session.

We'll be hearing first from Professor Stephen Leeder, who will provide evidence from a more technical side of the Australian health system.

Leeder is an emeritus professor of public health & community medicine at the University of Sydney
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We begin by talking about the structure of the Australian health care system.

Leeder explains the patient journey through primary care, to secondary care specialists and admissions to hospital.

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Leeder is explaining Primary Health Networks, and their intention to bring general pracitioners together.

"Their task is to promote the effective fellowship among general practitioners"

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We're now talking about the roles of different levels of government in health care services.

There's a point made about the need for state governments and the Commonwealth to clarify what they're responsible for.

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Integrated care: care that spreads from the hospital, into the community, and follows the patient.

The coordination of this care is absolutely critical, and has to be holistic, says Leeder.

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Leeder gives us some examples of the difference between treating episodes and treating ongoing issues.

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Ms Wright asks Leeder about the coordination of care, touching on Rebecca Kelly's evidence the other day which mentioned the fractured system.

Leeder responds saying that there needs to be an effort from health professionals carers, family as informed participants
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Leeder speaks about the main challenges in our health care system. He says the biggest challenge lies in Australia having an ageing population, and the way the system manages chronic illness.

He touches on how the system treats mental illness in older persons.

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Ms Wright raises the issue of training graduates in the health professions on treating people with disability, particularly cognitive disability.

Leeder says he has a mixed view, saying he recognises that we need a rapid turn around on this.

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He asks why you wouldn't focus on training the people that are already practicing, noting the time it takes for young graduates to practice in the field.

We need change now, and we can't wait for the next generation of health professionals.

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Leeder explains the continuing education programs available to health professionals.

He notes this could be an option to educate them on the treatment of people with disability.

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And that's it for Professor Leeder's evidence.

We will now hear from Professor Trollor.

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Trollor is a Professor in the School of Psychiatry at UNSW.

He's a neuropsychiatrist and holds the inaugural Chair of Intellectual Disability Mental Health

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We go through Professor Trollor's CV, which includes a lot of work in the space of intellectual and cognitive disabilities.

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Trollor speaks about his experience with research, and looking at international research in the same spaces.

A lot of research from the UK, US, Canada, and Trollor also notes the Netherlands as a particular source of research in this space.

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Trollor says that there is a lack of preparedness in every level of health care for treating people with disability.

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He notes the limited connectivity between health system and disability supports, and notes that people with intellectual disability need support beyond what the systems provide.

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Trollor says we have a very limited capacity to understand the health outcomes for people with cognitive disability and autism, largely because of our lack of data and correct reporting.

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Sackville asked what data we are missing.

Trollor responds that we need data about the health needs and outcomes for people with disability.

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We're now talking about the living conditions of people with disability, and how the level of severity of intellectual disability can affect this.

Trollor mentions young people with ID who live in aged care.

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Eastman asks about data quoted in Trollors evidence, asking if the 2015 data is the most recent data available.

Trollor confirms that this is the case.

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Eastman asks about the data which notes the increase numbers of people diagnosed with autism over the recent decades.

Trollor says that there's a lot of factors affecting data, and that the way we define and look at autism has changed, with increased awareness.

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Trollor talks about identity, and people with intellectual disability and autism who wish to be viewed as valued members of society who make valuable contributions.

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Eastman asks about the Human Rights framework in policy and medical practice.

Trollor says that people with ID are not routinely included in health care policy

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Trollor says that a human rights approach is relevant and necessary to make health care accessible for people with intellectual disability and autism.

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Trollor: the health status of people with intellectual disability has been known for years. Mortality statistics have been published by researchers in this area for years.

There's been incremental response but no big-picture approach.

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We're now ready for morning tea (and we really need it)

We'll be back in 15!

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Resuming with Ms Eastman asking @Trollor1 about the importance of identifying and responding to physical and emotional health issues that are more common in people with autism and intellectual disability.

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Trollor says there has been very little action in response to research on this topic that came out in the 90s.

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Most of the research in this area has been international. The Autism cooperative research centre ( autismcrc.com.au) is currently sponsoring a few studies in Australia.

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Lack of action on this leads to direct harm for people with #disability. People with autism and ID have more than twice as many preventable deaths as other people.

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Trolllor agrees with Eastman that the statistics are alarming. "The trajectory of poor health starts in the early years."

This is based on international data, but Australian data is likely to be similar once we get it - and it's important to do so.

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Eastman: People with intellectual disability are diagnosed with mental illness 2-3 times more than other people. What are the consequences?

Trollor: Profound implication for quality of life, health trajectory, early death.

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Eastman: So why are they routinely excluded from population health surveys?

Trollor: Logistics.

Eastman: What's that code for?

Trollor: Practicalities and cost.

Eastman: The mechanics of collecting the data?

Trollor: Correct.

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Another area in which Australia lags behind international research is data on adults with intellectual disability and autism, as opposed to children.

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Warning: They are now going to talk about suicide and suicidal ideation.

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Again, Australia has very poor data on this topic. But alarming US data has found 5x the risk of suicide attempts among autistic people.

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Eastman: What does this mean for young people with autism?

Trollor: We need to be vigilant about the increased risk, especially as people enter adolescence.

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Needs are not well-met. For example, our national suicidal ideation strategy doesn't mention autism at all. Trollor puts this down to lack of awareness of the issue.

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Eastman: Is there anything in Australia's education system to support teachers to be aware of these issues if they come up when the child is outside the home?

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Trollor: Progressive education departments are very aware of this issue. School counsellors see a high number of children with autism who are experiencing suicidal ideation.

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Moving on to physical health issues. Eastman asks why we lack data on comorbid health issues in Australia.

Trollor: It's symptomatic of a divide between the disability system and the health system.

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Sensory and communication issues can delay diagnosis when people don't know to factor them in. For example, people who respond to pain differently.

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Trollor says we need a population health focus, more data. Lack of linked data systems makes this hard to achieve.

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Swallowing problems, respiratory and gastrointestinal issues are common causes of death - if you are not supported to adequately manage your feeding, you're at higher risk.

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This is according to a study of disability service users. Eastman asks if there's any research outside that area, Trollor says he's not aware of any except an international study about swallowing issues.

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https://twitter.com/bluntshovels/status/1230298041455788033

Moving on to mobility impairments, which can impact access to health services. [We would say health services impact people's access to them by not making their physical spaces accessible to ppl with movility impairments!]

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People with intellectual disability have a higher risk of Alzheimers. The reasons for the risk are understood for Down Syndrome but not for other kinds of intellectual disability.

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There are no specialised services for assessment and management of dementia in people with intellectual disability.

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Referring to earlier witnesses, confirming the fragmentation of different health services and specialists - Trollor says it gets much worse for adults with disability, and it's a difficult problem to solve.

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Disability professionals need the resources and funding to help people coordinate their medical care.

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Ms Eastman is now asking Prof Trollor about how diagnostic overshadowing works. We put this one in our jargon buster!

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This is particularly an issue for people who communicate differently. People who communicate by changing their behaviour, for example - a healthcare professional might write their behaviour off as directly caused by their disability.

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Trollor: Medical practitioners need to know how to assess people with autism and intellectual disability. We need some skilling quite rapidly.

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People with ID are 4 times more likely to be in prison, especially if they are Indigenous. They also return to custody at high rates because they are not adequately supported when they leave.

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Trollor: Criminal justice system contact and poverty contribute to complex healthcare needs, and our system is just not equipped to deal with it. We need significant adaptations to our standard practice.

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Moving on quite rapidly to lack of access to preventative healthcare.

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GPs struggle under the current model of service delivery and funding. They can't address the multiple issues that people present with.

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GPs are overwhelmed with paperwork and don't have time to get through someone's preventative health needs.

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Trollor: The system doesn't support the level of complexity presented.

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Eastman asks about private health insurance for people with cognitive disability.

@Trollor1: That would be an interesting thing to study, I'm not aware of research on it. We do know people with ID use private hospitals substantially less than you'd expect.

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@Trollor1 Trollor was part of the team working on this research, which includes deaths of people with ID:

ndiscommission.gov.au/news-media/res…

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They provided detailed recommendations to the #NDIS Commission, and he wants to highlight some of the challenges for the Commission as it goes forward.

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There are limitations in what kind of data the NDIS Commission collects, particularly what kinds of deaths are reportable.

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They only cover deaths of people being supported by a registered NDIS provider. So there will be people who don't make it into the reports because they are getting support from a non-registered provider.

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Previous systems of reporting were not national, so States and Territories had different levels of data collected. Nothing at all for Tasmania, Western Australia.

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Trollor says people with ID share the top ten most common causes of death with the general population. It's the proportion of potentially avoidable deaths that has the big gap.

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He estimates that about 400 Australians with intellectual disability every year die from something that could have been prevented - a huge issue.

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Chair points out that beyond that, poor healthcare also leads to reduced quality of life, chronic pain, etc.

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Commissioner Bennett: How do you measure the success of interventions without good data?

Trollor: You can't.

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It's hard to quickly change the healthcare system in a way that we know is going to lead to a good outcome.

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Commissioner Galbally talking about the importance of people being able to bring a support worker they are familiar with to hospital.

Trollor: It's an area fraught with difficulty, both including families in emergency situations and the funding for formal support.

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Trollor: It used to be easier with a provider of last resort to negotiate these arrangements. The transition to the #NDIS has made it difficult but I think that's slowly changing.

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Chair says it sounds like there should be a national version of this, Trollor agrees.

https://twitter.com/bluntshovels/status/1230308652210278400

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This has been suggested years ago at a roundtable. Whose responsibility is it to act, Trollor asks? There's a lot of goodwill but people go away and forget.

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It's hard to hold people accountable as they move on from their positions etc.

Galbally: Obviously there needs to be a structure, not an individual, responsible.

Trollor: Yes, we need a whole of government response.

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Trollor: The data and research confirms the lived experience of people with disability and supports the advocacy of excellent orgs like @CIDvoice

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@CIDvoice Eastman asks about the national Australian coronial information system. There's no explicit code for disability status in that database, according to Trollor's submission.

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@CIDvoice Eastman harks back to yesterday's evidence, the distress caused by identifying someone's disability as a cause of death. How do we identify disability as a status for coronial purposes without ppl's death certificates defining them by their disability?

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@CIDvoice [For more about the National Coronial Information System, their website: ncis.org.au ]

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@CIDvoice Trollor: In our research we had to put 8 different datasets together to get decent data - needs better linkages.

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You discover things that were previously hidden when you re-code causes of death that were listed as someone's disability, so it's important for data as well as avoiding distress. But it's hard to change a system that's been in use for many years.

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Trollor: We don't list someone's genotype in their cause of death, even when they died from a highly genetic condition. So why do it for Down Syndrome?

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#DisabilityRoyalCommission is now adjourning for lunch. We'll be back at 2pm, when the Commission will ask Prof Trollor for recommendations.

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And we're back! Counsel Assisting Ms Eastman SC is taking Prof @Trollor1 through the recommendations section of his submission.

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@Trollor1 These recs are meant to build on previous guidance, including a guide to intellectual disability inclusion in mental healthcare, which was created by UNSW with NSW Department of Health funding in 2014.

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That's Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers

3dn.unsw.edu.au/project/access…

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Prof Trollor notes that there hasn't been funding to implement many of the recommendations in the Guide.

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There also hasn't been much action on the recommendations of a recent roundtable on that topic.

The one thing Prof Trollor is aware has been taken forward on schedule is the National Disability Data Asset.

minister.servicesaustralia.gov.au/media-releases…

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Eastman asks why there are so many delays on Trollor's, @CIDvoice and others' recommendations.

Trollor says responses have been incremental, rather than prioritising the drastic changes that are needed.

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Eastman asks why it's been so incremental. Could progress be made faster?

Trollor says the timeframe is inadequate in his view.

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There is no current timeframe to implement training for healthcare staff that Trollor and co have proposed.

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"It's actually really difficult to get traction and get parties on board."

Trollor hopes that if the #DisabilityRoyalCommission makes recommendations, that will accelerate things on a national level.

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Eastman challenges the idea that we need to evaluate and test and pilot to know that training will work - she points to previous witness Toni Mitchell who has made positive change just by talking to healthcare staff about her own experiences.

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Trollor: The purpose of an evaluation is to prove the value of something to a potential sponsor, notwithstanding how obviously it is helping.

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Eastman and Trollor agree that human rights focus and putting people with disability at the centre of the training will be important in changing attitudes.

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Commissioner Atkinson reminds everyone that every year we delay, 400 people die needlessly. (That's just people with ID over 20, so more than that actually.)

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The Guide mentioned earlier clearly identifies reasonable adjustments for practitioners to make their care inclusive - this needs to be legislated nationally.

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There's already mandatory training for healthcare staff - it should include how to make their spaces and information accessible.

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There aren't currently any Easy Read materials for people engaging with the mental healthcare system, including about their rights.

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Even when people are specifically trained in intellectual disability mental health (15 trainees recently funded) they have trouble finding work within the system! We know people with ID access mental health services a lot but there's no funding to hire specialists.

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People with cognitive disability have been left behind in mental e-health initiatives for a long time - although Black Dog is currently working on one.

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There needs to be change to the Medicare Benefits Schedule so that GPs can take more time with people who have cognitive disability.

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Small investments in better preventative care could save both government money and people with disability time and trauma when it comes to emergency hospital admissions.

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Government needs to take on a leadership role in policy development and implementation, while centring the lived experience of people with disability, says Trollor.

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Trollor again emphasises the lived experience of people with ID and their families - he is in a position to hear a lot from them and wants to amplify their voices.

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Bennett asks Trollor to confirm that there has been no formal cost-benefit analysis done in Australia on that strategic investment in early intervention for health outcomes of people with disability. Trollor confirms, says there's a little data out of the UK.

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We will now be hearing from Dr Jacqueline Small, who is a developmental pediatrician.

She's the team leader of the Disability Specialist Unit for the Sydney Health District.

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Small is a member of the Strides team, which is one of the new specialised teams in NSW Health.

The team focuses on helping people with intellectual disability whose complex needs have not been met.

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They assist professionals in the primary health sector and other sectors to help them care for patients with intellectual disability.

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Another purpose of this team is capacity building for health professionals.

Smalls says it will start slowly, and grow to increase the knowledge of health care professionals in NSW.

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They're looking to share skills that will help mainstream health care professionals care for people with intellectual disability.

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We're hearing about a resource with tools which help health care providers better understand the complex needs of people with intellectual disability.

The resource can be found here: aci.health.nsw.gov.au/resources/inte…

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Small says that she believes this resource is the only of its kind, and wishes to implement a national resource.

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Small says that she thinks this could work as a mechanism to create national standards for health care providers.

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Small: The health inequities (for people with intellectual disability) are stark and are persistent, despite having them be demonstrated for a very long time.

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"We must establish meaningful health outcomes for people with intellectual disability and their families"

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There is a lack of national strategic plan for the care of people with intellectual disability, and creating one would take a large amount of funds.

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Dr Small refers to 'Right to Opportunity' , a report which addresses the national strategy. She reads excerpts which highlight the inaccessiblity of mainstream health services for people with disabiltity.

The report is linked here: dss.gov.au/disability-and…

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We're talking about integrated care now.

It's mentioned that it goes beyond just sharing records, but it's about coordination, support, and communication.

"We must also build new pathways to care"- Dr. Small

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Wright asks about the training that Dr Smalls had to undergo in her training
for the College of Physicians regarding to treating people with intellectual disability.

Dr Smalls says no, she didn't receive specialised training.

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There's no specialsits for intellectual disability, but Small says we might be able to achieve specialists that have knowledge and understanding about intellectual disability and complex needs.

She says there needs to be enhancement in curricula to include this

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Dr Small says it's not just doctors that need training, but nurses, allied health professionals, and registrars + clerical staff as well.

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There are tools which are cheap, easy to use, and could be used to make accessing health services is easier.

She uses an example of using short powerpoints with pictures to show young children in ED what procedure/treatment they were about to receive.

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Small says that reasonable adjustments (such as additional communication aids) are particularly important in environments such as emergency departments.

She says these environments are scary and stressful for anyone, especailly people with intellectual disability

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She says we need to more carefully consider what we see as quality of care and quality of life for people with intellectual disability.

Says we need to find ways to meaningfully drive care.

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Dr Small discusses how children with developmental disabilities can fall through cracks in the system as they transfer into adolescent and adult care.

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There's also been a resurgence in training for general practitioners due to a lack of integration between specialists.

She highlights once again the lack of training opportunities available to learn about treating people with intellectual disabilities.

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Dr Small talks about the NDIS, acknowledges that the scheme has provided support and opportunity for many, but that for people with complex needs it sometimes creates a break down in their care.

Says there's been a loss in collaboration between services.

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We're now onto the recommendations.

There are 5 key areas which Dr Small has highlighted.

She says we must introduce high level accountability, systems that drive collaboration, dedicated funding, and implement systemic strategies and tools.

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Dr Small has finished her evidence.

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And that's it!

The #DisabilityRC has officially adjourned for today.
The hearings will start back up tomorrow morning at 10am, and so will we.