Thread by @PWDAustralia

Today we wrap up this round of #DRC hearings focusing on health care.

The hearings will kick off at 10am and so will our livetweeting.

We'll once again be using the hashtag #DisabilityRC if you wish to mute it.

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

We're kicking off now.
Eastman says the topic is sensitive and extremely difficult. Some aspects of the evidence will include talking about suicide.

We want to remind people that it's ok to to step back, and support is available.
We have resources here:
pwd.org.au/drc-hub/suppor…

The witness is Giuseppina Porte (Jo Abi)

She'll be talking about her experiences in accessing mental health care and general healthcare for her two sons who have autism.

Phillip is 16, wants to get his drivers license, and loves virtual reality.

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He also loves cosmology and astrophysics.

Giovanni is 12 years old, loves online gaming, and thinks of it as a safe space to make friends.

Katerina is the youngest daughter, and she loves her brothers.
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Jo first suspected Giovanni had autism when he was a toddler. She said that when she would bring it up with GPs, teachers, they would think it was silly and he was fine.

She said she felt paranoid. She started doing her own research.

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She said she built up the bravery to ask the GP and teachers once again for them to take her seriously.

'He's fine' is the response she regularly received.

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She said it was difficult to access a pediatrician. There were waiting lists, there wasn't many that would bulk bill and they couldn't afford private care.

She said she knew it was urgent, but she also had to be a mom, and it was hard.

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Giovanni went to school and didn't cope well. Jo asked the special needs teacher about Giovanni, said she though he was on the spectrum.
The teacher said she thought Giovanni was hearing impaired and suggested an audiogram.

The test came back fine.
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When Giovanni was 7 he finally got to have his assesment. He was then diagnosed with autism.

She said it was painful, mostly because she felt that no one had listened to ehr and she wished she'd done it sooner.

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Jo contacted the school with the diagnosis.

The school didn't have any special procedures in place. She had heard that funding and support would be made available.
She thought the diagnosis would be the turning point, but it didn't make anything easier.
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She said she tried different types of therapies and support, but it was difficult to find someone who Giovanni trusted and who was affordable.

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Giovanni was transferred to a mainstream school. He had a good experience there and got support, but they didn't ahve an autism specialsit.

He moved to a specialist unit but only stayed for a day. He said he was manhandled and was very upset.

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Jo says that communication is a key thing, she wishes people would take time to understand how to communicate with Giovanni.
There are doctors who are great, and make an effort to explain things and make him comfortable. Giovanni loves it, and loves learning.

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We now talk about Phillip, Jo's oldest son.

Phiilip also has autism, but his diagnosis came about differently, and unexpectedly.

He attended mainstream school and did fine for the first two years.
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She said a dark cloud came over him, and he was sad. He wasn't her little boy anymore.
In year 5 she organised for him to be a psychologist. She treated mental health as physical health, and wanted to be proactive about care.

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Philip moved on to year 6. He said he was bored at school, and was very excited to start high school.

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Jo's niece was at the same school and on their first day of high school they sent Jo a photo.

Jo says her stomach dropped, she could see he wasn't happy, she knew something was wrong.

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[CW: suicide]
Eastman gives a warning about the content.

The psychologist pulled Jo outside after a session with Philip, She says that Philip had said he had tried to take his own life several times.

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Jo says she didn't realise until then, just how lucky she was he was still around.

She was told to watch him closely. They kept a very careful eye on him.

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One day Jo took Philip to the Children's Hospital, where he was triaged and taken to immediate care.

Jo says the first encounter with the nurse was fantastic, and they were very careful.
After that, they were left in the room for 12 hrs waiting.

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He wasn't admitted to the hospital but they got a referral to see a psychiatrist.

Jo says that after this visit they started talking more about the issues.

At this point Philip wasn't attending much school, they didn't have a child psychologist.

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One day when when Philip was 14, Jo came from early from work.

She found Philip asleep, and tried to wake him. He was groggy and not really waking up. She knew something was wrong and immediately taken to the hospital.

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He was admitted to the hospital.

He was treated and once he was out of critical care, a psychiatrist approached them about keeping Philip in the adolescent psychiatric ward.

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After a long while waiting for the bed, they wheeled him down to the ward, and admitted him.

Jo wasn't allowed to stay, and was told to come back the next morning.
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'They don't realize how much you need your person when you're that sick'
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a psychiatrist suggested that Philip may have autism.

This came as a shock to Jo, but said it was a diagnosis that really helped with treating underlying mental health issues.

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Jo says that Philip is now under the care of a specialist psychologist, who is very supportive.

They now work hard to make sure that Philip always proper care, and felt safe.

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He does art as therapy, and Jo has a drawing he made.

The drawing is him and Jo in a bubble, screaming for help.

They don't feel heard.

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Philip really wanted to come talk to the #DisabilityRC himself, but wasn't able to.

Jo talks about their communication now. They talk openly about mental health, and approach it as any other medical issue.

She talks about stigma, and it's effects on people struggling.

We're now talking about the NDIS.

"I know people have positive experiences with the NDIS, but I haven't yet"

Sometimes it seems like they have to google autism after they walk in the door.

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She says it's been difficult getting the support she needs from the NDIS.

They both need different things and the NDIS hasn't been flexible and actually providing what they need.

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"They deserve an education, they deserve good care"

"I'm fighting for my kids basic rights, and it's 2020 and I don't know what's going on"

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Jo says that if her kids got everything they needed, they could achieve so much.

Instead of supporting them, they do a lot to make them fit in. They do a lot to fix her kids, not fix the world around them

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"The world around them should be able to adapt"

(We love the #socialmodel)

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Jo says that online communities and forums have been an incredible support for her.

They all support each other, and celebrate their children.

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"I have to be a doctor, a psychologist, a psychiastrist and a nurse for my boys"

Jo reads the final part of her statement, saying all she wishes is a good life for her boys. The lack of support doesn't offer that.

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She doesn't trust the health care system.

The support she receives, if she receives any, is patchy and hard to navigate.

Support is not affordable, not accessible.

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We've adjourned for morning tea and a much needed break.

We'll be back in a few minutes for the next session!

#DisabilityRC

We've now resumed with the hearings.

Eastman gives a small statement about the #DisabilityRoyalCommission effort to use best practice and trauma informed practices when it comes to discussing topics such as suicide and suicide ideation.

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It seems we're having some issues with the stream cutting out, so we apologize for delays.

We'll now be hearing from Margot Elliffe and Evelyn Scott.

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They've both prepared statements for the #DisabilityRC as the mothers of Tara Elliffe and Kylie Scott.

Tara and Kylie wanted to give their own evidence, on their own. Their mothers will be giving evidence separately.

Margot and Evelyn were asked about the first experience being told their daughters had Down syndrome.

They both answer that silence was the giveaway.

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Margot says a doctor told her she shouldn't have had Tara.

She didn't say anything, got her prescription, and left. She went home and cried.

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We're now talking about pre-natal testing, and choice.

Margot says that medical professionals are always quick to assume that if a pregnancy is considered "high risk" it should be terminated.

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Evelyn says there needs to be more information.

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Evelyn talks about making people feel like burdens. Burdens to education, health services, their families.

She says medical professionals need to consider more about the issue.

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Margot had a community nurse that supported her as a caseworker after Tara was born. She helped in navigating the health care system.

Margot also didn't have family, so having someone to talk to was important.

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She said also helped with little things, like making appointments, getting parking tickets, and just in general making the system easier to understand.

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Kylies father left and she struggled a lot with her mental health. She struggled with thoughts of suicide.

Kylie finished school and went off to find employment.

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She struggled at first. She worked in the public service.

People were mostly kind, but there was a lot of issues. She was accused of harrassing people for asking what there was for her to do. Stuck in front of computer screens.

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She continued to struggle with her mental health. She went to see psychologists to try and get help.

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Now Margot is talking about Tara's GP (who Tara mentioned during her evidence)

The GP is patient and understanding, and also primarily deals and focuses on Tara. Ultimately Tara makes decisions, and they all work together to get information.

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Kylie also has a good GP, after a long road to find one. Evelyn say they've tried a few, and always interview them beforehand.

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Eastman asks about informed consent, and supporting people with intellectual disability to make their own decisions.

When Tara and Kylie were asked about this, they both said trust in their GP was very important to them.
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Evelyn says decision making was crucial to Kylie.

She said she taught Kylie from a young age to say that she has to think about, get information, and make a decision.

Tara usually likes to talk over things, but sometimes will make choices on her own.

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Margot says that its about constant reinforcement and support when they make decision.

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Also we apologize for gaps in tweets, our stream is still lagging and we're missing bits and pieces.

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Kylie is now living independently and it's been really good for her.

She had learned a lot of skills in the past to help her, and she's been doing great.

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We're now talking about when Tara was taken to the hospital with abdominal pain.

Margot talks about the experience. Tara wasn't physically examined at first, there was never any privacy or care. They asked questions but Tara stopped answering.

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They were told that Tara had gastro, and to go home.

Margot wasn't happy with this, Tara was in a lot of pain. She asked her to point to where the pain was- and she pointed to the shoulder.

The doctor then asked for another scan.

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Tara then got her scan. The technician who performed her test was great, and explained the entire process.

The doctor read the scan, and said Tara had to be admitted. She had to have an operation for an infected gallbladder.

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Post-operation Tara was left in a room, wasn't given proper pain management. She felt isolated and scared.

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Margot had to push for pain relief, and advocate for Tara. She wonders what will happen when she's not around anymore.

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Eastman asks about how Margot and Evelyn ended up as advocates. Evelyn says it doesn't really come as a choice.

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Evelyn: if you don't research and get your own information, you're not going to make any head way with anyone.

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Margot talks about having lots and lots of fights with education departments.

She talks about having to pay for things with no support, such as speech therapists.

She also says she wanted Tara to be able to be involved in mainstream schools, life, etc.

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Margot talks about the changes she wants to see to the system. The health system has a long way to understanding people with intellectual disability.

She says people need to learn to present information differenetly, and understand what works for different people.
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Having virtual hospital tours available, or explanations of procedures that are accessible.

Eastman asks about person-centred care. Margot says in the case of Tara, it means people listening, things being explained, caring for her.

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She says no one has the time to sit and listen. Explaining ways she can care for herself.

Margot says the idea is a great policy, but doesn't think it's in practice.

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Evelyn talks about being able to get support for Kylie. It wasn't easy, but she had to do it. She wanted to help Kylie get her confidence back, and be who be wanted to be.

It was a long haul. The pathways thorugh the mental health process are not clearly defined.
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Evelyn says that she had to get Kylie the help she needed herself, but she hoped the profession would have more input.

She says Kylie is an extraordinary person.

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That wraps up the evidence from Evelyn and Margot.

We'll have a recess for 5 minutes,
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We're back now, and we'll be hearing from the final witnesses.

We'll be hearing from Robert Strike and Justine O'Neill.

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Robert is a trailblazer for people with intellectual disability. He's a fierce self-advocate.

He was one of the co-founders of Self-Advocacy Sydney, almost 34 years ago.
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Robert says people with intellectual disabiltiy should be able to make decisions for themselves, and have their own voice.

Self Advocacy Sydney works to educate people on intellectual disability. He remains on the board.

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Robert has made representations to the UN on two occassions. He's spoken about the easy-read system.

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We're sorry everyone our stream has frozen (yet again)

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While we wait for our stream to come back, here's information about Self Advocacy Sydney:

sasinc.com.au

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He says people can be afraid to speak up. Health professionals speak to fast, talk over people, don't listen, don't explain.

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Past experiences can have a big impact on how safe people feel at hospitals. People might not want to talk about trauma. Parents and family, carers often have to be advocates.

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Robert says that everyone in the hospital system has a role in making sure people feel comfortable and safe, and able to ask questions.

Giving examples, showing what is going to be done, and making sure the person understands what is going to happen.

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Easy-read materials are an important resource. They have photos and aren't just plain english. They can help people understand things.

It doesn't stop there, you also have to take steps to make sure they understand and can ask questions, take their time.

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Communication is important. Robert says you have to look at someone, and talk to them. He says they're people first, disability second.

If people don't know how to communicate with people with intellectual disability, training is available.

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Robert talks about policy saying sometimes when he gets given them, he puts them in the bin.
He notes the need to include people with intellectual disability in making policy.

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That completes the evidence for this set of hearings. Sackville will be giving closing remarks.

We'll be taking a 10 minute break now.
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We're back now.

Eastman thanks everyone, the witnesses, and everyone who has helped with the hearings.

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Any witnesses who took questions no notice will have to respond by 13 March.

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A report will be made public about this hearing, and will be published in due course.

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Sackville starts his closing remarks. He says it has been a difficult experience. The evidence has been distressing, heartbreaking, but it's essential that the #DisabilityRC exposes this neglect and abuse.

He thanks all the witnesses who came forward to share their stories, and specifically thanks the people with disability who gave evidence over the past 2 weeks.

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The witnesses have shared traumatic experiences, and have also shared recommendations about what we can do better.

This hearing has also demonstrated the importance of advocacy, systemic and individiual.
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"The path to genuinge reform has been mapped out pretty clearly, what is needed is a stimulus to government"

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We've heard catastrophic evidence about the consequences of lack of understanding from healthcare systems about people with disability.

Sackville also talks about the importance of media and framing around the commission.

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The commission has now offciially adjourned.

We want to thank everyone who followed along with our tweeting. Remember to take care of one another.

We'll see you at the next hearing! (and definitely beforehand)
#DisabilityRC