Thread by @PWDAustralia

We're back for another day of #DisabilityRoyalCommission live-tweeting!

We'll use the hashtag #DisabilityRC in all our tweets, for you to follow or mute.

If you need support with what may be distressing evidence, more information here: pwd.org.au/drc-hub/suppor…

https://twitter.com/DRC_AU/status/1232440449245122560

Okay, we had some minor technical issues but we're back. @FrancesPWDA is also tweeting:

https://twitter.com/FrancesPWDA/status/1232445378399596544

Ms McKenzie is talking about how diagnostic overshadowing happens in disability accommodation as well as healthcare settings - support workers may not help people get to the doctor in the first place if they think they're seeing a behavioural issue, not a symptom. #DisabilityRC

We heard from Community Visitors during the Melbourne hearing on group homes, as well. They are a part of trying to compensate for the risks associated with social isolation in congregate care.

#DisabilityRC

https://twitter.com/DRC_AU/status/1232445868160110592

To catch up on what we mean when we talk about congregate care, institutions and group homes, check out the Housing section of our DRC Jargon Buster: pwd.org.au/drc-hub/jargon…

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Ms Porter notes that people who live in group homes often have no choice about their GP, who is selected for the convenience of staff or management - usually someone local who will do home visits, and see everyone at that group home.

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One example of problems arising from that lack of choice - women with complex sexual trauma may prefer a female GP, but the GP that's convenient for staff happens to be male, and the person with disability's needs are not considered.

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The Commission asks Ms Porter what she can do about it if she brings this sort of thing up with group home management and they won't act on it.

Ms Porter says she's "hamstrung" - all she can do is raise it with the Ageing and Disability Commission. #DisabilityRC

Ms McKenzie says there are referral processes for complaints like that - for NDIS providers, they have to refer it to the NDIS Commission, and it's then their responsibility.

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Ms McKenzie says they are currently having some issues where they've referred complaints to the #NDIS Commission, but they can't find out what happens from there - they are told there are privacy concerns. They're trying to resolve this now.

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She says complaints that are being referred to the NDIS Commission are usually fairly serious, have already gone through mediation, and need urgent action.

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Counsel Assisting Ms Wright is now asking both panelists about the CHAP tool we heard about yesterday.

qcidd.centre.uq.edu.au/resources/chap

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Ms Porter says sometimes it can be reduced to ticking boxes, with no followup on issues noted in it.

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It's not unusual to see health records that are out of date, and nobody takes responsibility for responding to that.

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Ms McKenzie says this is particularly an issue with sexual and reproductive health - the people filling out the paperwork are clearly not prioritising it.

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Often it says the patient refused an examination, and there's no evidence anyone has tried to help that person access necessary assessments and treatments in an alternative way.

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There are tools and resources out there to help people overcome anxiety about tests and medical appointments, but staff don't know about them and make no effort to find out.

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And there's no attention to rostering, making sure there's a familiar staff member there for the appointment - sometimes it's a casual the person has never met before, which increases their anxiety.

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Good practice for support staff is associated with quality management and oversight. Some services have team leaders that support their staff to prepare and do that work successfully, and some are just chaotic.

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Porter: It's not fair and it's not equitable that your health outcomes depend on the quality of the support workers.

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There are concerns about some of the newer providers since the launch of the NDIS - their policies and procedures are inadequate, their staff aren't qualified and don't understand the needs of people with disability.

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There's also a lot of variability in how coordinated providers are when it comes to communicating with hospitals about people being discharged.

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And when people are going into hospital - a good hospital plan gives hospital staff ciritical information about the person's history and communication needs, but sometimes people just get put in an ambulance and sent to an unfamiliar hospital with unfamiliar staff.

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Commission asks how people who are choosing a group home can know any of this stuff, which is important in choosing the best provider.

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Ms McKenzie says it's very hard for people to know and more information needs to be made public.

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Porter: Minimum qualifications and ongoing training for staff are "very deficient."

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Since the #NDIS rollout there seems to be less access to/funding for training for staff.

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Ms McKenzie again emphasises the importance of hospital support plans to provide information to hospital staff when someone's admitted.

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Some time ago work was done to create joint guidelines with a template for hospital support plans. An evaluation done a few years ago found poor uptake - the guidelines were there but services and hospitals weren't using them.

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Mr Porter says there's a lot of variability in implementation of plans that do exist - exmaple of someone who needs eating support and hospital food is just put in front of them and then taken away again.

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Ms McKenzie: Hospital staff often think disability services are medical settings staffed by nurses, so their discharge advice isn't appropriate for the people who are meant to implement it.

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As we've heard over and over, dental care is a particular area of concern.

Ms Porter says disability support staff are often not proactive about making sure people see dentists in a timely way.

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15-minute break before the next witness.

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We're back with witness AAJ, who will be referred to as Dr J because of privacy orders.

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Dr J is a medical specialist in palliative care, who has been practicing for over 20 years. She has an interest in patients with intellectual disability and has seen patients in many settings including group homes. She now works in a teaching hospital.

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She wants to talk about how the health system undertreats, mistreats, neglects and abuses some patients with intellectual disability. She has found adults with ID referred to her for palliative care much earlier than appropriate - sometimes before any treatment.

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Dr J is very concerned that patients for whom radiotherapy or chemotherapy would have been appropriate are being referred to her for palliative care instead. She has recommended more active treatment for some of her patients.

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She says the current system of general practice doesn't allow enough time to properly evaluate and look after the needs of patients with intellectual disability.

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Dr J's statement presents several examples of mistreated patients.

A woman in her 60s came to Emergency with heavy cervical bleeding. She was sent for a biopsy and then home, with the suggestion that if she comes back it should be to palliative care.

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Her notes said she had "the mental age of a five-year-old" which is not an appropriate way to talk about intellectual disability. Her GP's number was recorded wrong, but Dr J found the right number and talked to him to find out important info including meds.

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The woman successfully went through radiation under Dr J's recommendation, despite other medical staff being skeptical that she would comply just because of her disability.

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Dr J thinks that patient was poorly served by the "conveyer belt" atmosphere of a busy hospital.

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The cancer was also picked up much later than cervical tumours usually are, so it's likely she didn't get the same cervical screening most people get.

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In another case, a man with intellectual disability later turned out to have cancer, but the GP kept telling his sister, who brought him in, that it was just haemorrhoids and there was no need to do any tests.

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Case 3 - a young man with a skin tumour referred for palliative care. The particular cancer isn't curable, but chemo can keep it down for a long time. The doctor told his parents he wouldn't tolerate chemo, without really thinking about possible adjustments.

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Dr J had to do some diplomacy to get the patient a second opinion. He's turned out to respond very well to a new immunotherapy treatment. Dr J feels that first decision was based on his intellectual disability.

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Case 4 - a patient whose catheter kept getting infected, normally treated with antibiotics, but on this occasion the doctor sent him back to his group home with morphine instead.

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This was a unilateral decision to move from (effective) treatment to palliative care, in an emergency context, without consulting the patient or his family.

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Dr J also notes that she hasn't seen as many patients with intellectual disability as she should have, based on statistics - implying that people who do need palliative care might not be getting it.

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Dr J also has a son with autism and intellectual disability, who has trouble communicating about pain he experiences. She has been told that his autism is "too severe" to admit him to a child psychiatric ward in an emergency.

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They put him in a medical ward with a security guard because there was apparently no appropriate place to put him. The security guard's presence was not helpful for his mental health.

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Counsel Assisting Ms Eastman asks about solutions.

AAJ: It starts with education. Training of doctors and nurses in relation to cognitive disability needs a total overhaul.

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Medical professionals need to understand that quality of life looks different for different people.

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Dr J gives an example of a patient who was screaming loudly on a ward and everyone just ignored it because "he has a disability" - not thinking that something still had to be wrong for him to be screaming like that.

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AAJ: There needs to be mandatory training. Medical staff are overloaded with optional training modules and they just don't get through them unless it's mandatory.

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She would also like to see some services and clinics, including in regional areas, that specialise in patients with intellectual disability.

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A disability advocate/liaison role in hospitals is urgently needed, especially in a large hospital.

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Dr J says it wasn't easy to make her statement, and it may shock people to hear things like this happen in a developed country like Australia.

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She says patients with intellectual disability face a profound struggle in the healthcare system from the moment they are born to the moment they die, and people need to stop ignoring it, because they deserve so
much more.

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The #DisabilityRC is now adjourning until 1:30.

We might be late to the next witness, but @FrancesPWDA will keep tweeting for the next bit! #DisabilityRC

@FrancesPWDA We're back now to live-tweet the rest of the session.

We're hearing from Jayne Lehman, who's telling us about her daughter Sarah.

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@FrancesPWDA Jayne is describing what quality health care was for Sarah.

We're hearing about her GP, who was helpful, and used tools that assisted Sarah, Jayne, and support workers to get the care they needed.

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@FrancesPWDA Sarah was taken to the hospital after having a seizure.

She had bitten her tongue and was in considerable pain. Jayne didn't realize this until she checked herself, after noticing distress,

She used a tool that she had created to help Sarah identify pain.
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@FrancesPWDA Sarah and Jayne used documents that explained the care and complex needs required for Sarah to heath practitioners.

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@FrancesPWDA Jayne is talking about the health system in the UK, and their movement towards being more inclusive and accessible. This was done by legislation.

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@FrancesPWDA We're talking about Sarah's hospitalisation again. Jayne says that the support staff were a great help during this time.

The support workers were then told by their service that they were no longer allowed to stay in the hospital with Sarah.

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@FrancesPWDA They were told that their NDIS plan wasn't going to pay for it.

Jayne speaks to a lack of clarity about who was paying, as she had been reassured that the support workers would be covered.

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@FrancesPWDA She tried to get an emergency review of their plan.

She was told that it was an ongoing issue, and that they weren't sure how they would proceed.

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@FrancesPWDA She says that even after Sarah's death, she has had to deal with collecting the right information and continually dealing with conflciting information from the service providers and NDIS.

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@FrancesPWDA Sarah talks about the inaccessability of the NDIS to people with intellectual disability.

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@FrancesPWDA Jayne says Sarah made her and her other daughters strong women. She hopes she'll be able to keep that strength.

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@FrancesPWDA Jayne is talking about people being 'disability champions'

She says we need to include people with intellectual disability, and use their expertise to make more accessible and inclusive environments.

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@FrancesPWDA Jayne also wants legislation.

Shes says the endgame is to have businesses and services moving quickly to inclusive and accessible practices, with legally mandated targets.

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@FrancesPWDA Jayne also feels that the NDIS needs to also provide support for the people caring for people with disability.

She says there's no thought to what happens after the death of a child with disability.

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@FrancesPWDA She calls for accountability. She says they have no accountability for the people using the scheme, for their valued lives.

She says she's tried tirelessly to contact people within the organisation, she's never encountered something so hidden.

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Eastman reads out the final part of Jayne's statement, which talks about the valued life Sarah had.

Her life was filled with love. Her family was filled with love for her, but also fear. This fear came from the systems that had failed her.

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The Commissioners thank Jayne for sharing Sarah's story, it has been heard.

We're now at a short adjournment, we'll be back in a few minutes.

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We've resumed the session.

We'll be hearing from Karen Barnett, who is a teacher, and Tracey Nash, who is a carer.

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They say that their statements are based on memory. Karen had gone through the process of letting go of some of the documents she held.

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When Karen and Tracey heard about the #DisabilityRoyalCommission, they decided to make a statement about Grant (also known as Butch), Karen's brother.

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Grant was quick-witted and 'a smartass'. He loved travelling.

He was clever, he had fun, he made friends with everyone.

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He was a very determined person, and often did things the doctors never expected him to do.

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Tracey became Grant's live in carer. She was responsible for his health and personal care.

Tracey developed a close relationship with the whole family.

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Grant had a fall just days after she started as his carer. He was out with a service provider and fell out of his char, breaking his leg.

She quickly learned the best way to communicate with him. It took a while to understand and get to know him.

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She came to understand when he would be in pain, and when he wanted help.

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Tracey talks about the first hospital visit,
She was with Grant the entire time. They had different experiences with different doctors.

She says it would depend on who knew him. Most of them would just speak directly to Norm, Grant's father.

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Grant was discharged with the broken femur. He was placed into physiotherapy.

The physiotherapist struggled with helping Grant, she spoke harshly. Grant wouldn't do as she asked because of this. She didn't try to find an alternate way to help Grant.

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In August 2014, Grant suffered a stroke and was taken to the hospital again. The medical staff conducted some tests to diagnose the stroke, and he remained in the hospital for a while.

At this visit, there were several instances where the staff would not listen.

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Staff would not listen to Norm about the care Grant needed.

They often wouldn't speak to Grant, or they would speak to him in ways that were not appropriate for him.

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It seems we've hit some technical difficulties with the feed. We'll keep you updated!

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The livestream is still currently down

We hope it comes back up soon, until then we'll keep everyone updated with what's going on.

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and we're back with the livestream

We're now hearing about Grant's time in palliative care. Tracey and Karen said their support was great, and they helped Grant a lot.

He went home 2 days before his death. Tracey and Karen never left his side

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He wanted to be at home.

Grant died 5 years ago, but his death still causes a lot of pain for his family.

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After his death, Norm wanted more information so they went to the coroner to conduct an autopsy.

A report was prepared, which listed Grants genetic condition as a cause of death, among congestive heart failure and hypertension.

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The family wrote a letter to the hospital about Grant's treatment throughout his stay. The letter was signed by the family and Tracey.

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The hospital recently underwent a review, and published their report with recommendations.

One of these recommendations is the 'Hi, my name is__' iniatitive, so staff introduce themselves to all patients whenever meeting them.

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This was one of the main issues the family had with people the staff at the hospital during Grant's treatment.

Staff should introduce themselves, who they are, and what teatments they would be doing.

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Another critique comes up about the communication between palliative care and paramedics.

They speak of the night of Grant's death, and trying to deal with the paramedics and the police while trying to get a hold of palliative care after hours,

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That completes the evidence for Tracey and Karen.

We'll now be having a break for a few minutes.

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We've now resumed the hearing.

The commission has come to a decision to delay the witness that is supposed to give evidence now until Friday morning.

We'll be resuming again at 10am tomorrow.

#DisabilityRC