Thread by @PWDAustralia

A two-week #DisabilityRC hearing on healthcare for people with cognitive disability begins today.

9news.com.au/national/disab…

The hashtag to mute if you don't want to see our tweets about it is #DisabilityRC

The witness list is here: disability.royalcommission.gov.au/publications/w…

The livestream will be here: disability.royalcommission.gov.au

#DisabilityRoyalCommission #OurRoyalCommission

Today, @gdevera and @bluntshovels will be kicking off the live tweets for our team. Later on you might hear from @FrancesPWDA and more from this account, too.

You should also be following @CIDvoice!

#DisabilityRC #DisabilityRoyalCommission #OurRoyalCommission

@CIDvoice Some @CIDvoice members & staff are giving evidence at this hearing. It's important for the #DisabilityRC to hear from people with #disability directly. @CIDvoice have been working with @DRC_AU to support people with intellectual disability so they can tell their stories.

The content of this hearing could be confronting. We have information about support services and links to different helplines on our website: pwd.org.au/drc-hub/suppor…

#DisabilityRC #DisabilityRoyalCommission #OurRoyalCommission

We also have a summary of some of the issues this hearing will be looking into: pwd.org.au/drc-hub/issues…

Plus, we've defined some technical words and phrases that might get used in our Jargon Buster: pwd.org.au/drc-hub/jargon…

#DisabilityRC

If you're reporting on the hearings, we also have a guide for media that you may find helpful.

pwd.org.au/resources/libr…

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https://twitter.com/bluntshovels/status/1229542014401691648

https://twitter.com/gdevera/status/1229543120527716353

To find out more more about legal capacity and supported decision-making, check out our DRC Jargon Buster: pwd.org.au/drc-hub/jargon/

We explain these terms and link to further reading.

#DisabilityRC #DisabilityRoyalCommission

https://twitter.com/bluntshovels/status/1229552285665001473

https://twitter.com/FrancesPWDA/status/1229570517583052801

Jack is talking about being a young person with disability, growing up with more choice and control over simple decisions in life, which gives him more confidence compared to people who grew up in institutions and are not used to having choices.

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Justine is explaining supported decision-making. "Recognising people's rights to make decisions for themselves" and figuring out what kind of support people need to participate as much as they can in decisions about their lives.

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Contrasting with substituted decision-making, where someone else decides what is in your "best interests".

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Justine: We're going to hear a lot about the negative consequences of people with intellectual disability not participating in decisions about their healthcare.

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Difficulties building people's ability to make their own decisions?

Justine points back to Kelly and Jack's testimony, talks about how when people around you don't believe in your ability to make decisions, you don't get the chance to do so.

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How can the healthcare system incorporate more supported decision-making?

Justine: Orgs need to recognise their role in creating processes for staff that encourage the involvement of people with intellectual disability.

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Easy Read communication. Allowing time for people to gather information and think about it. Focus on will and preference when there isn't enough time in an acute context.

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Justine emphasises the importance of including people with intellectual disability in policy discussions. It's impossible to reach an outcome of inclusion and support without consultation.

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Jack: We have a long way to go, to get decision-making to the forefront of health professionals and service providers.

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It makes going to the doctors a lot better and a lot less stressful [when they invest more time in the interaction].

It should be a positive tool rather than a negative tool.

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Next witness is Ruth Oslington. Her evidence starts with a video of a speech she made last year.

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Ruth talks about her frustration with mental health labels. She says two people with the same diagnosis can have very different life experiences and be helped by different treatments. She prefers to describe people's experiences more specifically.

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Ruth describes the mental health issues she has faced and how her quality of life has improved lately. She also talks about complicated feelings about the idea of seeking professional health. "The public mental health system needs to be improved."

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She feels the impulse to hide symptoms because she's afraid of being kept in hospital and given distressing treatment she doesn't consent to. This fear is based on what has happened during previous episodes.

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Ruth: Recovery isn't the same for everybody. People should be supported to make their own healthy decisions.

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Strong correlation between good social relationships, connection with a community, and good mental health.

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Ruth on stigma: If someone is struggling with a problem, don't tell them their reality is the wrong reality. Don't pathologise human emotion. Show compassion and understanding to people.

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Ms Eastman is now going to ask Ruth some questions, going slowly because Ruth's had some recent health issues that have affected her feelings about public speaking.

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Ruth says stigma and labels don't help people get better.

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Ruth has been judged by people who don't even know the meaning of the labels they are judging her on.

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Ms Eastman asks what's important in healthcare settings. Ruth says trust and time, enough time to understand complicated problems.

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Eastman: You've got lots of ideas about what you think could be better, what governments could do to make access to health better and easier.

Ruth: Yes. Pay programs helping people. Education [for people working in mental health]. Involuntary treatment, problem.

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Enough support, a good place to live, so people don't have to go to hospital because they need lots of support and support is not there.

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Different professionals [in mental health services] need to communicate.

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#DisabilityRC is now breaking for lunch, to resume at 2:00pm.

We are resuming with witness Rebecca Kelly. #DisabilityRC

Rebecca is the chair of Down Syndrome Tasmania - downsyndrometasmania.org.au - and has a primary-school-aged son, Ryan, who has needed specialist medical care in a number of areas, including recurrent ear infections, a heart condition and leukemia.

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Rebecca's statement describes a number of issues she and Ryan have had with the healthcare system, including difficulty and delays in getting proper diagnoses and adequate care.

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She's describing medical staff repeatedly changing their minds about the urgency of Ryan's ear surgery over the last year, as he struggled with recurrent infections. It's now scheduled for March.

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Rebecca: Our health system is very fractured. The link between our local hospital and tertiary centre is not good. Poor communication.

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Ryan has complex intersecting health needs and Rebecca constantly has to verbally pass information between different specialists when it doesn't get written down.

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Where she does have access to notes, they are often incorrect - serious errors like writing down the wrong ear for which one has the infection.

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She's describing delays at emergency and devaluing of her knowledge of the situation that made the process of diagnosing and treating oral thrush unnecessarily long and traumatic.

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Counsel Assisting Ms Wright asks what a good healthcare experience is like.

RK: When they see Ryan as an individual, not "another Down Syndrome child." Those doctors give the best quality of care. And they listen.

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RK reading from her statement about medical trauma. "Ryan has had painful and invasive procedures since he was a newborn." Hard to watch a baby put through painful procedures. Staff assuming he doesn't feel as much pain because crying and moving was harder for him.

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Complex trauma led Ryan at age 6 to stop talking and signing, begin having sleep problems. He's become scared of friendly people after spending so much time with friendly med staff who then hurt him.

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Things have improved since then, but trauma still impacts Ryan and his family. Rebecca says she has lost her trust that the system will put her son's needs first.

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RK: The level of vigilance required has been an enormous burden on me and has endangered Ryan's health. It is terrifying that his care is so dependent on my advocacy skills. What happens to a child whose parents have less education, or their own disability, or ESL?

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Care needs to be more proactive, and medical practitioners need to understand that things can escalate quickly due to delays in diagnosis caused by communication difficulty. They need to understand children who communicate pain differently.

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Constantly seeing new doctors in the public system makes it hard to get a consistent care plan, and encourages a "wait and see" attitude so it's the next doctor's problem.

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RK: Ryan doesn't use a lot of words, but he's a very powerful communicator with body language, if you pay attention. It's important for doctors to learn about.

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She praises the doctors present at Ryan's birth for acknowledging the challenges without a negative attitude about Ryan himself and his Downs Syndrome. Since then she has had some negative experiences with doctors/nurses e.g. saying "didn't you have the test?"

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Now she's talking about the problems with the medical model of disability. "If you can't cure it then you eradicate it - it sets up a bad dynamic about how you consider the person and their life."

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Read more about the medical vs social model of disability on our website: pwd.org.au/resources/disa…

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RK: If your doctor is thinking your life will be better if your child doesn't make it, that has awful implications for the quality of care. It affects all the care they get going forward.

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RK: People probably wouldn't admit [their bias against people with disability] but it's central to medical training, and it needs to change because it's very dangerous.

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RK: We need to change medical training, to break the concept that disability devalues you as a human.

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RK: There needs to be better transparency and accountability. People need to follow the existing guidelines.

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Fixing those systemic communication problems across the system is fundamental to good care.

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Chair asks if the My Health Record system has improved anything.

RK: Not that I have noticed. If people don't write the letters and notes, it's not in there.

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There is no universal shared platform for record-keeping across the medical system. Some things do go back to the GP, but it's not a functioning, integrated information system.

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That's the end of today's witnesses. Thank you for accompanying us on this journey - we'll be back at it tomorrow at 10am.

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