Thread by @PWDAustralia

This week's #OurRoyalCommission hearing, focusing on housing in Victoria, is about to start.

You can watch the livestream here: disability.royalcommission.gov.au/Pages/default.…

We'll be live tweeting using the hashtag #DisabilityRoyalCommission

Look after yourselves this week - some of the stories people will be talking about will be confronting.

We have a list of support services available here: pwd.org.au/drc-hub/suppor…

If you're not sure what some of the common terms the #DisabilityRoyalCommission uses mean, like Counsel or Leave to Appear, check out our jargon buster: pwd.org.au/drc-hub/jargon/

There's a list of witnesses for this week's #DisabilityRoyalCommission hearing up here: disability.royalcommission.gov.au/hearings/Docum…

Chair is repeating some notes from last hearing: that the Terms of Reference for the #DisabilityRoyalCommission are extremely broad - they're looking at a really wide range of things.

Also that the Terms of Reference are very clear about referencing the #CRPD and focusing on Australia's obligations under international law.

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He's now talking about our housing rights, and defining group homes.

Note that PWDA has some explanations online about these housing issues as well: pwd.org.au/drc-hub/issues…

Article 19 of the #CRPD says people with #disability must not be required to live in a particular kind of home - we need to have choices.

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The Chair also notes the known risks of violence and abuse in group homes, and our long history of fighting for choices about where we live.

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Focusing on group homes is meant to acknowledge that since we started shutting down institutions, many people have simply moved into housing that is very similar, only smaller - group homes.

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The Chair says it's important not to portray the upcoming witnesses as victims in need of pity. They've had the courage to make their voices heard in difficult circumstances.

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The #DisabilityRoyalCommission will also be exploring best practice options, as in the previous hearing on education.

Chair Sackville is now encouraging people to read the confidentiality document on the @DRC_AU website:

disability.royalcommission.gov.au/submissions/Pa…

This is about what happens if you don't want some of your information to be made public when you make a submission.

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Ms Eastman SC, Counsel Assisting, is now making a statement about the importance of home, and the upcoming witnesses, and the disturbing incidents they'll shine a light on.

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"For some people with disability, their home is also somebody else's workplace." These homes are organised for the convenience of people who work there, not people who live there.

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She's also acknowledging #IDPwD tomorrow, and talking about its history and purpose.

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One of the things #IDPwD is about is changing attitudes to view people with #disability as people with human rights, instead of "objects of care/sympathy".

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This #DisabilityRoyalCommission hearing is about how Article 19 of the #CRPD should apply to the individual lives of people with #disability

Ms Eastman also says the #DisabilityRoyalCommission will hear this week about the history of institutions and the way we've been trying to move away from them - that's called de-institutionalisation. Also about the emergence of group homes as part of that process.

"There remains a question of whether group homes are simply institutions on a smaller scale."

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This hearing will not examine the #NDIS or the funding arrangements of SDA - these issues will be addressed in future hearings.

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The #DisabilityRoyalCommission has already reviewed past research on living arrangements, and seeks to look into what has changed recently, and with a particular focus on violence, abuse, neglect and exploitation.

Eastman is about to talk about some incidents of violence in Victoria that were exposed 7 years ago. She's warning us that she will be describing sexual violence, and pausing for anyone who needs to leave or pause the stream.

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"We cannot cover up violence and abuse by using euphemistic and indirect language."

We won't tweet those details because it's hard to control what you're reading on Twitter, but they will be in the transcripts.

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These events have resulted in significant reviews and investigations. The service provider in question was one of the first to make a submission to the #DisabilityRoyalCommission

The CEO will be answering questions about how they have improved their practices.

The #DisabilityRoyalCommission will also examine other service providers and their responses to abuse, and hear evidence from experts on how service providers can improve safety.

Ms Eastman says the #DisabilityRoyalCommission will explore alternatives to group homes, with a human rights focus, on Thursday and Friday.

Today the #DisabilityRoyalCommission will hear from people with #disability about their experiences in group homes, including their experience of violence, abuse and neglect. Some will use pseudonyms.

There will also be parts of this evidence subject to non-publication orders to protect people's identities. Based on last hearing, that probably means the livestream will be paused again at the relevant points.

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Ms Eastman also acknowledges the short timeframe before this hearing.

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She also repeats that anyone trying to punish someone for giving evidence to the #DisabilityRoyalCommission is a crime.

Ms Eastman also repeats that the topics being discussed can be upsetting and triggering, and encourages people to seek support, including official #DisabilityRoyalCommission supports, which are listed here: disability.royalcommission.gov.au/support/Pages/…

There's now going to be a 15 minute break.

We're about to hear from Dr Peter Gibilisco. Ms Eastman is reading out a non-publication order relating to some of his evidence.

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Any statement that might identify the service provider in his statement is not to be published outside of the #DisabilityRoyalCommission

Dr Gibilisco is accompanied by two academic support workers. He is an author and an honorary fellow at the University of Melbourne.

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He wants to be viewed as a professional, not just someone telling his personal story. He notes the stereotyping that can happen when slurred speech is conflated with intellectual disability.

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Dr Gibilisco lives in supported accommodation in Victoria and does sociological research. His PhD was on the political economy of disability. He's also describing some of his symptoms.

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He needs personal care support, assistance to communicate, and to move his wheelchair more than a few metres.

He had to move into supported accommodation because he couldn't get enough support hours, and he lost a lot of control over his own life.
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He's talking about how people with #disability all have different needs, and standardised practices like making everyone have a maximum 45 minute morning routine doesn't work for many people.

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(We are reminded of a phrase Terry Pratchett used - "One-size-doesn't-fit-anyone")

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Dr Gibilisco is now talking about incidents of sexual assault by a staff member.

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He regrets leaving the matter to his service provider to resolve because he didn't want to take legal action on his own.

The service provider refused to stop people from making him feel unsafe by entering his room without his knowledge or permission.

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Dr Gibilisco contrasts that service provider with more individualised supports he got through the #NDIS and informally from friends, which give him what he needs on his own terms.

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He wants empathy, not sympathy. A personal relationship with a support worker allows for better communication and more personalised support.

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Ms Eastman is asking Dr Gibilisco for more examples of stereotyping and how it has affected him.

Dr Gibilisco says communication can be very frustrating. Many miscommunications, impatience, many people acting on his behalf without listening.

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An ambulance officer couldn't understand what he was trying to say and why he called. She tried to tell him and his carers that his call must have been due to a mental impairment.

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A lot of people depend on stereotypes and stigma to determine what he's saying because it's hard to understand his speech.

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Ms Eastman asks about particular changes needed for people with #disability to have choice and control about where and with whom they live.

Dr Gibilisco says "how much time have you got?"

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He does emphasise the importance of care workers who understand the individual person with #disability and their needs.

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Ms Eastman says the service provider in question will also provide a statement on the events in Dr Gibilisco's submission.

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There's a non-publication order to do with evidence by upcoming witnesses, so we will be limiting our tweeting to avoid personal information.

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Witness referred to as Ms A is talking about some experiences of her daughter, who has intellectual disability and mobility impairments.

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Her daughter, referred to as AAH, lives in a group home. Ms A emphasises her daughter's right to make decisions about her own life and personal care, like shaving her legs or skipping a meal if she wants to.

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The family moved house and were less able to have AAH at home on weekends due to lack of equipment and resources. Ms A says she felt she had to keep the pressure on AAH's support workers to allow her to express ordinary preferences about her life.

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"Management seems very fixed on ticking boxes for compliance." There is a very bureaucratic approach.

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Support workers had a policy against assisting someone to shave their legs, although they assisted men to shave their faces. Ms A had to work very hard to get her daughter help with this minor task she wanted to perform.

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Support workers didn't take the time to learn to communicate with AAH so they could ask her if she preferred tea or coffee. Instead they just chose for her.

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Ms A points out how staff turnover makes life difficult, because she has to explain things to new staff over and over again.

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She also describes an incident of neglect in which staff were absent and left AAH under the air conditioner, where she was cold, with her wheelchair brakes on.

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Ms A managed to get some improvements through negotiation with an individual manager, but when that person left, everything went back to how it was before.

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The #DisabilityRoyalCommission hearing has now resumed, but there seem to be some audio issues.

Auslan speakers, you'll have to describe this bit for the rest of us!

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Ah, we're back. Witness AAG has just been sworn in.

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The Commissioners have all read AAG's statement, and Ms Eastman will now question AAG about different aspects of it.

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Another parent speaking on behalf of a person with disability... We understand that there are many barriers to people with intellectual disability testifying for themselves, but we did hope to hear from more people with #disability directly.

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So far in this hearing and the last, @PGIBILISCO has been the only person with disability to appear on his own behalf.

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AAG is now describing a great group home manager currently running her daughter's home, and says her daughter's life has been tremendously improved by that. Her daughter went into the system in the early 80s, and this is the first positive experience.

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Needless to say, people with #disability who need a lot of support, and their autonomy and safety, shouldn't have to depend on the whims of one person who is in charge of so many aspects of their life.

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AAG is describing another group home in which her daughter was hospitalised twice after one support worker put her on a diet with no medical supervision and no oversight from management.

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AAG's daughter was on a DHS "urgent" housing waiting list for ELEVEN YEARS.

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AAG had to submit a freedom of information request to find out about the kafkaesque situation at another group home, in which she was punished for not performing tasks she physically couldn't do due to her impairments.

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Support staff have for years threatened AAG's daughter with calling police when they don't like her behaviour, including things she had no control over. She now has a deeply distressing fear of police and punishment.

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AAG says her daughter was so traumatised by the abuse at several group homes that she compulsively apologises when she spills a glass of water.

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Now she's describing advocating on behalf of another resident of her daughter's current group home who was being moved to a different home against her wishes, which was very distressing for her and also AAG's daughter.

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They lived together for 12 years, and were separated without notice or contact. There was meant to be a transition plan for both, which wasn't implemented.

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Correction: AAG's daughter seems to be living on her own now, it's unclear whether that means in a separate suite in a group home. She's talking about the psychological benefits of this.

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AAG has spent years fighting for simple respect and help for her daughter. "Nobody wanted to do anything" until the changes in the last few months.

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Staff don't have enough training to support people with "complex needs". AAG says there needs to be extra and ongoing training. Agrees with previous witness about the problem of high staff turnover.

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She also wants an support staff national register, because the best case scenario when her daughter was abused was moving her or the staff member to another house. She wants abusive employees flagged so they can't just move on to abuse someone else.
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AAG is describing some of the runaround from dealing with the system, resulting in nothing but reports and more reports, no support for her daughter's trauma. She is visibly distressed.

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"I don't believe my daughter will ever be completely safe in her own home," AAG says tearfully.

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She thinks the casualisation of staff has been "a recipe for disaster".

(Probably should be common cause between staff unions and people with disability on that one.)

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Check out @bluntshovels for livetweeting of the next witness!

@bluntshovels

https://twitter.com/bluntshovels/status/1201349358152646662