Thread by @PWDAustralia

We're about to start livetweeting another week of the #DisabilityRoyalCommission!

Remember that support is available if you find any of the testimony distressing. More details here: pwd.org.au/drc-hub/suppor…

And please feel free to mute the hashtag #DisabilityRC if you need to.

https://twitter.com/DRC_AU/status/1231691450661752832

Opening remarks from Senior Counsel Assisting Kate Eastman SC, explaining that this morning's evidence will focus on dental care and this afternoon's on First Nations experience, which will be an ongoing thread throughout the Commission.

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Tomorrow, we'll hear from Jim Simpson of @CIDvoice, who will tell the Commission that health promotion campaigns and preventative health don't pay enough attention to people with cognitive disability.

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@CIDvoice We'll also hear from Professor Nicholas Lennox about the CHAP tool: qcidd.centre.uq.edu.au/resources/chap

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Later this week, the Royal Commission will be questioning representatives from the Health system, NSW and Commonwealth, about issues that have come up so far and initiatives for improving the health of people with intellectual disability.

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We will also hear from the #NDIS Quality & Safeguards Commissioner, in particular about reportable deaths, data and research, and actions recommended by the Commission.

ndiscommission.gov.au

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We'll also hear from more parents of people with cognitive disability about their advocacy role, and close with Robert Strike AM.

sasinc.com.au/self-advocacy/…

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The first witness for today, Ms Monaghan, was previously listed on the witness list as AAK. She has asked for the anonymity order to be lifted for herself but stay in place for her children.

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Ms Monaghan is a registered nurse, and will be sharing the health and dental care experience of her son, who will be called L for this hearing.

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Families like hers have had to "battle their way through the system" to find services, with letter-writing and calls to politicians.

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Ms Monaghan says her nurse training involved no more than "a couple of hours" of training about disability, although that was a long time ago. She didn't know anything about autism until her son was diagnosed.

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L was born in October 2000. He was diagnosed with autism at 3 years old, after a long wait and having to go to Melbourne when the Ballarat waiting list lost his name.

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Later tests suggested intellectual disability, but they were based on tests that autistic people often have trouble with because of issues with verbal instructions - language impairment isn't the same as intellectual impairment.

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Ms Monaghan says it's important to note that what some people call "challenging behaviour" is for non-verbal people often about trying to communicate. L is mostly non-verbal but understands most of what's going on around him.

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What works for the family at the moment is mostly environmental cues - showing L a towel when it's shower time, showing him the car keys to see if he wants to get in the car.

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L enjoys riding his bike, watching YouTube and listening to music - music is a big part of his life and he has very wide-ranging musical tastes.

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They use a communication app on the iPad and L is good at communicating things like food choices but has some anxiety about using it for emotions and social stuff.

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Eastman asks how someone like L could give evidence themselves. Ms Monaghan says the bright lights and environment would be difficult, but a teleconference with a familiar environment and a support person, and questions provided in advance, would help.

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Moving on to the healthcare system, Ms Monaghan says there needs to be more time allowed, that small changes can be hard for people with autism to deal with and good healthcare needs to be well-coordinated to manage that.

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L's neurologist is an example of good healthcare - he treats L as a person and has a plan that is flexible and adaptable to L's needs.

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He pays attention to L's cues and can see when L is getting anxious and respond appropriately.

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He also gives them multiple options for treatment, because they only see him every 3-6 months and can't just go back straight away if something isn't working.

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This example is to contrast with the experience L has had with dental care.

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L went to a segregated school from age 3 and annual dental checkups were provided at the school, without Ms Monaghan present. As far as she knows there weren't any familiarisation visits to help L get used to it.

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From age 12 he went to a different school without those dental health checkups, so Ms Monaghan took L to a community health centre. They had a "special needs" dental clinic but intake didn't ask anything about what L's needs actually were.

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Ms Monaghan had to explain L's autism and healthcare-related trauma to the dentist, and that he would need some time to adjust before he could get in the chair.

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In terms of looking after L's dental health at home, Ms Monaghan hasn't been given any particular advice or resources - it was "trial and error."

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It was very difficult to get a referral when L had actual issues with his teeth. No real options available.

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Last year, a new dentist was shocked that L hadn't had any x-rays for 12 years and referred them to a dental hospital. She pushed for urgent review while L was in pain because the criteria for getting through the system are not preventative-based.

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The dentist said it could take up to two years for an oral exam under sedation to happen - even though L was in pain!

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L also has a lot of trauma from other healthcare like pathology collection. He has been restrained and given anti-psychotic medication to manage his behaviour, which compounds the trauma.

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After an accident at the pool, Ms Monaghan wanted L to have an MRI scan but was denied because he "hadn't lost any skills".

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(parts of this testimony is being muted for privacy reasons, so apologies if it's a little disjointed.)

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Ms Monaghan is now talking about how hard it is to get a comprehensive behavioural assessment. Intake process is very onerous for a parent without medical training.

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She just wants to be a mum, but in response to neglect by services she finds herself having to be an advocate, a lawyer, everything else.

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Every time there's an incident with L, including seclusion and restraint at school, and being left on the bus - people tell her "this has never happened before," and she doesn't believe it.

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Ms Monaghan echoes a number of witnesses from last week in saying healthcare staff need more training and experience with disability, and especially in the social model of disability.

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She says there need to be friendlier spaces, especially for children with autism. Novel and flexible approaches are important - not necessarily anything expensive or complicated, just small things.

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Before the oral exam under sedation Ms Monaghan asked to be allowed to give L pre-medication herself, in the car, to reduce his anxiety, but it didn't happen - although there is precedent.

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She would also like to see some streamlining of health data and government bureaucracy for people with disability.

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Chair asks about the private health system. Ms Monaghan says they don't have private health insurance but have sometimes paid privately for consultations due to long waiting lists in the public system.

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The hearings are now resuming.

We will be hearing from Dr Richard Zylan and Mr Nathan Despott.

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@gdevera will be taking over the livetweeting for the next hour.

follow along on his account for now, we'll be back later!

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@gdevera We're back for the rest of the session!

We're talking about lack of communication between dentists, GPs

There's two forms from the Oral Health and Intellectual Disability which allow for clear communication between dentists and GPs.

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@gdevera The second form a Home Oral Care Plan.

This form includes an oral health care plan, and some information and check-boxes for carers and support workers to note warnings about oral health.

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@gdevera We're now discussing the use of restrictive practices in dental health care for people with intellectual disability.

There's talk of need to look at over-referrals to special needs dentists, and making sure that we free up services to people who really need them

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@gdevera Despott notes the need for understanding of the needs of people with intellectual disability by general dentists.

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@gdevera In closing remarks, Dr Zylan says that there are preventative measures that exist for people with intellectual disability, and that every time those measures are not taking it is neglect.

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@gdevera Mr Despott noted the need for connection between the dental health sector and disability rights sector.

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@gdevera We've now adjourned for lunch.

We'll be back at 2pm for the next session.

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@gdevera We've now returned from lunch.

Next we will hearing from Narelle Reynolds.

This afternoon we will be focusing on the experiences of First Nations people.

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@gdevera Ms Reynolds will be speaking about her experiences accessing the health care system for her two sons with Fragile X syndrome.

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@gdevera We're getting a bit of background on Ms Reynolds's employment background.

She wanted to become a nurse. Her grandmother pushed her to do typing courses, and get on-the-job experience to become a nurse.

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@gdevera Later on, Ms Reynolds worked in co-ordinating dental health care for Aboriginal families.

Her work entailed helping families organise to visit the dentist, providing education, and educating dentists as well.

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@gdevera We hear some more about her family.

She's got four children- all who are adults now.

They've lived in various parts of Australia.

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@gdevera Three of her children were diagnosed with Fragile X. Ms Reynolds says that she didn't know what the condition was at first.

Fragile X is a genetic disorder that can cause intellectual disability.

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@gdevera Ms Reynolds first began noticing the Fragile X syndrome in her son Justin.

She took him to a GP, pediatrician, other specialists. She says no one listened, and he wasn't diagnosed at first.

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@gdevera After a while, one of the doctors said he might have autism.

He offered the options of putting Justin in a group home, or in special care. Ms Reynolds wasn't happy with that option, and left.

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@gdevera She says that after the diagnosis, she didn't receive and more information on how to support her son with autism.

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@gdevera Ms Reynolds was approached by a doctor while Justin was at a special needs school.

Justin then received a blood test, which found that he had Fragile X syndrome.

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@gdevera She says that the lack of services was difficult, she didn't receive much support or information about helping her sons.

She speaks of trying to talk to the community and families about Fragile X.

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@gdevera Ms Reynolds tells us about supporting Luke and Justin, and helping them find work.

She is Justin's full time carer, with help from her daughters.

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@gdevera Justin was diagnosed with epilepsy, and was taken to the hospital after a seizure.

Ms Reynolds recalls Justin being lost, and the medical staff didn't look for him. She then found him crying outside the hospital.

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@gdevera She said that after this she noticed his fear of going to the hospital.

When she had to take Justin to get a tooth removed, and told the doctors he would need medication to enter the hospital. They didn't listen.

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@gdevera She said Justin needed something to calm him down. She had brought her entire family to help.

The doctors didn't listen to Ms Reynolds, and Justine was very anxious and distressed.

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@gdevera Ms Reynolds then says Justin was very distressed, and she was pushed to the other side of the room.

Then the doctors decided to give him something to calm him down, and help him with his anxiety.

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@gdevera We're now talking about Luke.

Luke also has Fragile X. He loves Rugby League, and loves the Queensland Broncos.

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@gdevera Luke was diagnosed with a form of thyroid cancer.

Ms Reynolds recalls that she had to tell Luke of the diagnosis, and the possiblity of having it get removed.

She knew he faced a lot of anxiety about hospitals.

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@gdevera It took 8 attempts to get the biopsy.

Ms Reynolds suggested before the first biopsy that the doctor give Luke 2 valiums to calm him down.

It was only until the 9th attempt, where one of the doctors couldn't do it and signed a letter asking for the medication.

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@gdevera Ms Reynolds is now talking about her experience going to the media for awareness and to advocate for her sons.

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@gdevera Luke received a surgery a few years later. She says that after, a surgeon patted her on the back and said 'You did a good job convincing us to do that'

She was furious, noting she wanted to 'punch him in the face'.

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@gdevera She said it took months for her to prepare Luke for his surgery, to make sure he was comfortable.

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@gdevera Luke's health continued to deteriorate.

She noticed he was not improving as he should, and she continued to go to the doctors for help.

She ended up relocating to Coffs Harbour, where she was able to receive more complex support.

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@gdevera Narelle and her family have been effectively homeless since moving Coffs Harbour.

They've lived in tents, sheds, small flats for short periods of time.

They haven't been able to find adequate housing.

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@gdevera They've asked for support, appropriate services, applied to many housing options with no luck.

She says her sons are traumatized by having to move.

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@gdevera She says she doesn't want people to feel sorry for her.

She wants people to notice the layers, and the intersections between First Nations communities and accessing health and disability services.

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@gdevera She talks about the lack of culturally inclusive practices in a lot of health services.

She says being a First Nations person and raising two sons with intellectual disability is a 'double whammy'

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@gdevera She says she works with services to understand how to be inclusive of First Nations people.

She works with her sons doctors to make sure they understand. 'They can do so much, but they're not given a chance'

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@gdevera 'We have to ensure our place in the world, which is rightfully ours, is safe'

Ms Reynolds is talking about growing up in Aboriginal communities. She talks of oppression, and teaching her kids to be proud of their culture.

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@gdevera We're reading through the suggestions made by Ms Reynolds.

Her first one is that each hospital should have one person trained in supporting people with intellectual disability.

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@gdevera She also recommends that NDIS reviews service providers in person when a complaint is made.

She also says that the NDIS needs trained liason officers to help First Nations people navigate the system and support access.

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@gdevera She says that there is a gap in care for First Nations people with disability.

They would be more comfortable if they were receiving support from a familiar face.

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@gdevera She speaks of talking to service providers about being inclusive.

When getting her sons support, with activities she knows they enjoy, she often made recommendations, and offered to help them with programs but was refused.

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@gdevera Ms Reynolds says NDIS and service providers also don't offer many options to help carers receive respite, if they need a break.

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@gdevera We've now wrapped up with Ms Reynolds's evidence.

We're having a quick recess and we'll hear from @ScottTheHolWrld next.

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@ScottTheHolWrld And we're back with Scott Avery from @FPDNAus.

More about Dr Avery: theconversation.com/profiles/scott…

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His submission addresses a number of issues, and he's likely to be back when the Commission holds sessions on other topics later on.

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He starts by clarifying some language - First Peoples vs First Nations vs Aboriginal & Torres Strait Islanders.

@FPDNAus uses First Peoples to emphasise the shared experience of Indigenous people with disability across and outside nations.

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@FPDNAus He also warns that his evidence will include information about people who have passed away.

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Scott is a Deaf man who identifies with the Worimi nation. He uses a cochlear implant and lip-reading.

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He has also submitted his book Culture Is Inclusion as part of his evidence.

Find out more about that research here: fpdn.org.au/product/cultur…

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He emphasises the importance of data for showing that individual stories are representative of the broader experience of First Peoples with disability.

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(by the way, @bluntshovels is tweeting about this session too, in case anyone's following us and not her for some reason!)

https://twitter.com/bluntshovels/status/1231799816071475203

Dr Avery's research was motivated by hearing many stories from First Peoples with disability in his work with @FPDNAus but not hearing their voices in government initiatives like the Aboriginal and Torres Strait Health Plan.

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He's explaining his methodology - a mixed method approach in which qualitative data (people's stories) and quantitative data (statistics pulled together from separate Aboriginal and Disability data) support each other.

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(We wrote a little about the meaning of qualitative and quantitative data in our jargon buster: pwd.org.au/drc-hub/jargon/)

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Dr Avery's research was open-ended - asking people for as much or as little data as they wanted to give, without trying to guide their stories towards any particular aspect.

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He says intersectionality is more than just having two identities at the same time (Aboriginal + disability). It's about where people sit in the social hierarchies of power.

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The inequalities you experience as either an Aboriginal person or a person with disability are multiplied, not just added together, when you belong to both groups.

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e.g. an Aboriginal man with cognitive disability being constantly assumed to be drunk by people around him (due to stereotypes about Indigenous ppl), which reduces his access to public spaces in a way you can't explain without bringing those two aspects together.

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Dr Avery's research found a number of barriers to getting a diagnosis, which is very important for getting the support you need.

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He talks about a cultural model of disability. Compared to the medical model (talking about a person's deficits), the social model (talking about things like stigma and accessibility), the cultural model talks about what disability means in a cultural context.

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His example is barriers to fetal alcohol syndrome diagnosis: social barriers = fear of being stigmatised as a bad mother, cultural barriers = whether your culture sees disability or focuses on developmental milestones at all.

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They are now talking about diagnostic overshadowing. Quick explanation of that term in our jargon buster: pwd.org.au/drc-hub/jargon…

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Dr Avery made sure to emphasise the importance of the disability rights movement in getting diagnostic overshadowing talked about.

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He says it's important not to just see diagnostic overshadowing as a communication issue that can be solved with consultation and awareness - it can be a matter of prejudice, as in the example of ambulance staff assuming someone is drunk.

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Another intersectional issue Dr Avery's research heard a lot about is access to rehabilitation.

https://twitter.com/CIDvoice/status/1231805870012395520

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Aboriginal people with disability are "hidden away" when it comes to rationing - there's the idea that nobody will kick up a fuss when they don't get the care they need.

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Ms Eastman asks Dr Avery about his recommendations. He says change needs to be integrated throughout the system - from the frontline staff through to the national policy. These issues are currently absent/"othered" in all these areas.

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There's a lot of buck-passing in terms of responsibility for complex health needs that really need everyone to buy in and take responsibility - but right now it's noone.

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He calls it a "policy merry-go-round". Various policy documents just refer the problem to other policies, and it's so siloed that nobody sees it.

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"It would be quite comical if people weren't dying."

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Dr Avery hopes the #DisabilityRoyalCommission will finally be big enough to command some accountability from governments and the health system.

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Ms Eastman asks about his recommendations for the Commission's approach in this area.

Dr Avery talks about the @DRC_AU healthcare issues paper and notes that it cites the healthcare system but not our community as holders of knowledge.

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https://twitter.com/bluntshovels/status/1231809721528508416

That's it until 10am tomorrow. @ScottTheHolWrld knocked it out of the park!

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