Thread by @PWDAustralia

And we're off!

#DisabilityRC is the tag to mute if you don't want to see our coverage today.

https://twitter.com/DRC_AU/status/1232062649426276353

The first witness is Jaqueline Mills, giving evidence about her son's experience in healthcare, and her work with microboards - microboard.org.au

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Microboards are built on the Circle of Support model of disability support - making sure a person with disability has a group of people around them who really know them and their life.

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Microboards are a way of formalising that relationship and attaching funding to them to help them work well.

It's a form of supported decision-making structure.

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Members of a microboard are unpaid, and can be family members or unrelated community members. They advocate for the person with disability.

A microboard has a legal constitution setting out roles and responsibilities.

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They meet regularly with the person they're supporting, and include them in their own lives and networks, which decreases social isolation and vulnerability.

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Ms Mills says the evidence from British Columbia, where this has been in use for many years, shows that Microboards are effective at supporting people with cognitive disability after their parents die.

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The Commission asks why British Columbia has had so much more success there than Australia and Ms Mills says the funding model in BC is more well-suited the idea. NDIS style funding isn't enough to maintain an organisation like that.

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There are about 15 microboards running in Australia at the moment, and Microboards Australia is working to put together another 25.

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The person with disability is the leader of the board. Ms Mills says they often start out without an effective communication system, so that's one of the first steps - helping people on the board communicate with and understand the person they support.

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The intention is to support inclusion and human rights. But Ms Mills says developing this model has highlighted a lot of support gaps, including healthcare-related ones.

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The first microboards were formed around people who had been isolated in institutions for decades.

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One of the challenges is, how does a person in that situation ask for a microboard in the first place?

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Ms Mills gives examples of boards getting to know the person to support them, like finding out they are religious and working to connect them with a church, or finding out their interest in nature and getting them involved with a bird sanctuary.

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Ms Eastman asks how it works with the #NDIS.

Ms Mills says that if a microboard aligns with someone's NDIS goals, which can usually happen, funding can be assigned to the board.

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The Commission asks what it would take to spread Microboards across Australia, and Ms Mills says unfortunately it's funding. They have many highly-skilled people keen to do the work, but they need the funding to set everything up.

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The NDIS process would involve a two-year plan with about $8000 allocated for facilitators to help set up the board. It's easier when someone already has a circle of support.

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The Commission asks about the facilitators and Ms Mills describes some of the people working at Microboards Australia - mostly on a volunteer basis, although they pay people when they can.

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More information on microboard.org.au

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Ms Eastman says many parents wind up their children's advocates without any training or experience.

She asks Ms Mills what she has learned from professional advocates.

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One staff member at Microboards has decades of experience as a health advocate. She sees advocacy as primarily about relationship-building and helping people communicate and build trust.

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But she won't stop - if a person's rights are being violated she will do what it takes.

Ms Mills says she's learned a lot from her about having a vision of a peaceful outcome but being prepared to be respectfully forceful.

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Ms Eastman asks about skills overlap between individual advocacy and systemic advocacy.

Ms Mills says systemic advocacy is about relationships and finding a way for voices to be heard and understood by the system.

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Bear with us, there seem to be some technical issues with the @DRC_AU webcast.

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@DRC_AU The conversation is now about restrictive practices and organisations in WA working to eliminate them. Including a lot of chemical restraint (using medication to keep someone placid/compliant, as opposed to for their health).

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@DRC_AU Microboards Australia developed the "is there a better way?" program, helping people understand that behaving in challenging ways is part of being human and something to try and understand instead of just pushing it away.

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A large percentage of challenging behaviours have been found to be related to unmet needs.

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More about Is There a Better Way: itabw.com.au

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There are now a number of schools in Western Australia teaching people how to help kids with complex communication needs.

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Ms Mills has a son with Angelman's Syndrome, who uses a wheelchair and has high support needs. He can also experience challenging behaviours.

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He does short presentations at workshops and conferences and is recently trying out stand-up comedy. He also loves travelling, trains, and music.

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He has PTSD from a number of traumatic interactions with the medical system, and that in turn increases the amount of trauma involved in future medical procedures.

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Ms Mills says she has often felt like she's let her son down by not doing enough to prevent these traumatic experiences, but she's learned a lot from that feeling and it's made her a stronger advocate. there's only so much a family member can do.

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Parents wind up making decisions in very stressful situations, where they may be very fatigued and vulnerable to pressure from medical professionals to allow treatment that might not be in their child's best interests.

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It's important for parents to have their own support system, not to be left alone with that. But it's also important for medical professionals to prioritise the human rights of their patient, and trust parents who know how to communicate with their kids.

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People who communicate pain differently often don't get the x-rays etc that they need, and Ms Mills says she's been judged first for trying to insist on an x-ray and then, when it didn't happen, judged later for the consequences of leaving a broken bone untreated.

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On another occasion, Ms Mills's son wound up with a burst appendix because medical staff didn't understand how his pain was presenting itself.

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We are still getting intermittent webcast interruptions, so we're skipping over bits that are too fragmented.

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AAC (augmented & alternative communication) - Ms Mills says people often give up too soon. She gives the example of verbal children hearing thousands of words before they say their first word. She realised her son needed to see other people using the AAC device.

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It took a 5 year process to get to a point where he can now say in detail which part of his body hurts - he recently flagged back pain so they found out his scoliosis had worsened. Sometimes he can warn about an oncoming seizure.

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The captioners are clearly also being affected by the webcast interruptions - we know transcripts are often based on live captions, so we hope there's an intact video somewhere to correct from later.

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Conversation now seems to be about the nuances of restrictive practices. Ms Mills says in a life or death medical emergency, it's the lesser evil.

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She says her son's body moves in lots of ways he doesn't necessarily intend, so it would be wrong to assume that because he's struggling he's choosing to refuse treatment. She says she believes he wants to live.

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Okay, we're off air for now. Hopefully @DRC_AU can fix whatever's wrong with the webcast in the break!

Oh good, Ms Eastman says there will be a full recording online at the end of the day.

They are working on fixing the webcast, as well.

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Ms mills is now talking about a paramedic in an ambulance denying her son pain relief because he didn't believe he understood what was happening!

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She says she regrets not pushing for an ultrasound during that same incident - her son was sent home, but eventually returned to hospital and an ultrasound found a broken bone. So he endured a lot of extra pain.

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She believes paramedics need extra disability training, because they often show up in very stressful times when people have extra trouble communicating.

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Ms Mills is now describing a man her son worked with, who had a stroke as a teenager, and was in his 40s before anyone found out he could use AAC.

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She and her son helped this man, A, to learn how to use AAC, but a nurse was actually angry at her for "giving his family hope" and said a number of awful ableist things about him, including that everyone was just waiting for him to die.

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She gives a number of examples of medical neglect through lack of appropriate equipment, like people in wheelchairs who have to go to emergency departments for basic care because GPs don't have hoists.

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One woman had never had a pap smear because her local GP didn't have a hoist.

Ms Mills also emphasises people who miss out on health care due to GPs no longer doing home visits.

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She's also talking about the importance of low-tech communication aids, like pictures. A lot fewer things that can go wrong with them.

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People with disability and families need a lot more help navigating complex medical environments and decisions.

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We also need more education and guidelines around things like restraint. Better planning around someone's healthcare can reduce the situations in which it even comes up.

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It's also important to educate families about medication errors that can happen in busy hospitals, especially for people on unusual medications or combinations.

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There need to be systems to make sure people with complex needs get the right meds at the right time in hospital - where you're not allowed to bring your own.

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Additional staff in place when people with complex needs are admitted would be an initial cost, but save time, money and suffering in reducing error.

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People with complex needs should always have someone with them who knows them well, whether that's a family member or a medical advocate.

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Ms Mills: We don't experience hospitals as safe places. People are at so much risk when there isn't someone there who knows how they communicate and can check that their meds are correct etc.

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Sexual and reproductive health is an area that's often overlooked. That raises issues when it comes to family member advocates.

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Nonverbal people are often not seen as adults with a capacity for sexual or romantic expression - unconsciously. People don't get sex ed in schools, sexual language isn't put on their communication aids, etc.

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That has a lot of implications in sexual and reproductive health - nobody checks for things like breast or testicular cancer and people aren't equipped to speak up about it.

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Ms Mills is speaking about the emotional effects on her son when people assume that he doesn't make choices or have his own life. And she thinks it has knock-on effects on his medical care, when people see him as a burden.

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The Chair thanks Ms Mills for her evidence and her very detailed submission. We'll adjourn for 10 minutes now.

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https://twitter.com/CIDvoice/status/1232111041812680704

Mr Simpson is a qualified solicitor and has been an advocate since 2001.

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He's been involved with @IDRS_NSW which has a big role in supporting people with intellectual disability through things like contact with the justice system.

idrs.org.au

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He says @CIDvoice has evolved from a federation of support services to a group guided by the voices of people with intellectual disability, which are key to their advocacy. Their work with professionals in the field and research also informs their advocacy.

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@CIDvoice Ms Eastman asks what the #DisabilityRoyalCommission needs to do to ensure people with ID can speak for themselves, and how to balance that with orgs like @CIDvoice

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@CIDvoice Mr Simpson says @CIDvoice hopes to be a role model when it comes to listening directly to the voices of people with intellectual disability.

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Simpson: There have certainly been improvements in the healthcare system, but the fact it's taken this long and there is still so far to go is a national disgrace.

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https://twitter.com/CIDvoice/status/1232114228737130497

There are so many subtly and blatantly eugenic views in medicine and medical research, like in the report Mr Simpson is now referencing about underweight babies.

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CID advocates for universal values-based training for all health professionals. Mr Simpson says people with intellectual disability themselves need to be at the forefront of that education. #DisabilityRC

"There is no substitute for anybody getting to know a person with intellectual disability and seeing them in a positive and valued role." - Jim Simpson #DisabilityRC

A lot of medical professionals still think, perhaps unconsciously, that it would be a good thing for a newborn with intellectual disability to die. How can families get balanced information to let them make choices in that environment?

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It is difficult to change values and attitudes, they don't change overnight.

@CIDvoice has just gotten an NDIS grant to put together a training module about communication, reasonable adjustments etc.

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The disability support sector has a big role to play in getting people with intellectual disability the healthcare they need - helping people communicate about symptoms, etc. Mr Simpson is concerned that it's not doing that well, might even be going backwards. #DisabilityRC

Asked about the importance of research, he says it gets politicians sitting up and listening and also generates publicity, helps with public opinion.

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Chair asks if the issues in the medical system that affect PWD so greatly are in fact general issues that also affect other people to a lesser extent, and perhaps the whole system needs to change.

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The National Disability Strategy has some aspects that focus on health: All health providers should have the capability to meet the needs of PWD. Timely prevention & early intervention services. Universal health reforms & initiatives that address the needs of PWD. #DisabilityRC

Ms Eastman is quoting from an interim review of that strategy, which talks about the implementation of these policy directions being a failure.

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Mr Simpson agrees. He says the Strategy just doesn't have a profile or power within governments.

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It doesn't have clear accountable targets that people have to report against, and it isn't taken as seriously as it should be - or specifically funded.

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Chair points out that documents like this are often more aspirational and less tactical.

Ms Eastman says there's an aspect of appeasement in that - government can point to NDS to tell ppl they care, but don't have to do anything in particular.

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Mr Simpson says he wouldn't necessarily say it was about appeasement but it certainly should have been given teeth, and that didn't happen.

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Ms Eastman is now asking Mr Simpson about his advocacy work in NSW.

The NSW health system has had several very good initiatives, but still has many problems.

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For example, there have been some excellent pilot projects that have not yet been rolled out statewide - and delays contribute to material suffering and preventable deaths.

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One initiative that has been funded on an ongoing basis involves specialised nursing teams in each local health district.

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Breaking for lunch now until 2:05.

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Apologies, we missed a chunk of this testimony. Jim Simpson from @CIDvoice is still on, now talking about his suggestions for improving the health system.

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One of the recommendations is establishing networks of specialised intellectual disability health teams.

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Commission asks about the boundary between intellectual disability and other kinds of cognitive disability with regards to CID's work.

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Mr Simpson says there's a lot overlap. People with intellectual disability have particular disadvantages but major action needs to be taken about the health of people with other kinds of disability.

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Important to increase support to people with disability to gain autonomy over their healthcare, and support to families to help them advocate.

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That's the end of Mr Simpson's evidence.

https://twitter.com/DRC_AU/status/1232155543390679042

We now have Professor Nicholas Lennox from University of Queensland @UQ_News to talk about practical implementation strategies.

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Prof Lennox worked as a GP for 10 years, among other medical roles. In 1992 he started working specifically with adults with intellectual disability - research, teaching, clinical practice and advocacy.

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@bluntshovels is taking over on the live-tweet roster!

https://twitter.com/bluntshovels/status/1232159818305040384