COVID-19 vaccination consent and hesitancy – webinar for disability service providers

This webinar on 7 December addresses issues relating to COVID-19 vaccine consent, hesitancy and refusal that can arise when supporting clients with intellectual disability.


Kellie Maloney: All right. Hi everyone, and thank you for joining this webinar discussing vaccine hesitancy and consent, facilitated by the Commonwealth Department of Health.

My name is Kelly Maloney and I'm the National COVID Operations Coordinator at the National Disability Insurance Agency.

I'd like to start by acknowledging the lands on which we all meet today around Australia.

I'm presenting from the lands of the Awabakal people in Newcastle, New South Wales.

I'd like to pay my respects to Aboriginal and Torres Strait Islander people and elders past, present and emerging. I extend that respect to any Aboriginal or Torres Strait Islander people here with us today.

Before we begin, I will run through some housekeeping to ensure that everyone gets the most out of today's session.

Only today's panellists will have their video and audio enabled during the session.

During the first half of today's session, I will pose questions to our panel, and then halfway through the session, we'll move to a live question and answer session where attendees can ask questions to the panel.

Questions can be submitted through the Slido box, which will appear on the right-hand side of your screen.

Once you've submitted a question, it will be reviewed by our moderators and I'll pose a number of these questions to our panellists.

We won't be able to address all of the questions that we receive today, given the time constraints. And, please note that our panellists can't comment on any individual cases.

This session is being recorded and will be made publicly available via the Department of Health’s website. Answers to questions that we don't get to today will be published alongside that recording, and links to any information referenced will also be included in that material.

You can use the big red x button to leave the meeting. If you accidentally leave the meeting you can re-join using the same link or details that you used to access the meeting in the first place.

Lastly, I'd like to thank Ramas and Rebecca who are providing Auslan interpretation for today's session. You should be able to see them on your screen now.

The purpose of today's webinar is to provide information on issues relating to consent and vaccine refusal or hesitancy.

We hope by the end of the session, you'll have a better understanding of: 

* How best to engage with health professionals on issues around consent and refusal, including GPs.

* Some successful approaches implemented by disability service providers to date.

* And, identifying relevant state and territory information on the person responsible or entity entitled to provide consent for vaccination – and what to do when that person can't be identified.

On that note, it's my pleasure to introduce you to today's panel.

I'd like to introduce Justine O’Neill, CEO of the Council for Intellectual Disability Australia.

Sarah Forbes, Advocacy Manager and Vaccine Ambassador for Valid.

Professor Nick Lennox, Senior Medical Advisor of Intellectual Disability Health in the Australian Government Department of Health.

Melissa Clements, Acting Registrar of the NDIS Quality and Safeguards Commission.

Catherine Sharples, Group Manager of Quality and Safeguarding from Scope Australia.

And Heather McMinn, Disability Sector Consultant from NDS.

To get into the body of our session today I'm going to ask Justine O’Neill from the Council of Intellectual Disability to talk to us about why consent and vaccine hesitancy can be a problem for people with intellectual disability, and to highlight the distinction between using the terms ‘parents’ and ‘guardians’.

Thanks, Justine.

Justine O’Neill: Thanks Kelly and hello everyone I'm Justine, and I'm joining you from Gadigal land in Sydney and pay my respects to elders here and across the land to you wherever you're traveling.

So, we're all little bit talked out about the challenges of 2020 and 2021 and keeping people safe and well, and people with disability, family, supporters and providers like you, have been at the front of all of that. And now the incredible science that's brought us a vaccine has also gifted us the challenge of actually getting it to the people. 

So, for many of you, that means also dealing with hesitancy, fear, new systems, confusion and the need for legal consent.

So, this situation highlights human rights issues for people with disability: the right to healthcare and wellbeing, the right to make decisions, and the right to be supported in making decisions.

Here’s a quote from a CID, that's Counsel for Intellectual Disability, staff member with intellectual disability about his experience.

“It was my decision to get the injections that I got and I was supported by my family. I decided to get them because it is a very infectious and dangerous disease, and an injection was my best way of keeping it off. 

I watched the news to find out about them and looked for information from New South Wales Health. My mum and dad got theirs first, then my brother, then we researched somewhere near home I could go.”

So, that's kind of how it should work, but the current situation also highlights the risk to people with disability of being beholden to decision making by others.

So, providers are having to manage the needs and expectations of a range of stakeholders, but the needs of stakeholders can't get in the way of the right of people with disability to good healthcare.

So, in every state and territory, there are laws about who can give consent when we can't decide for ourselves. Each state and territory is a bit different, but in all cases, there will be a hierarchy about who can decide and who can give consent – and it might not be who you expect.

So, consent givers will start with the person, me, and then a legally appointed guardian if there is one, and then it will move to other people such as partners, families, and carers.

It's really important to know and to record who can consent for the people that you work with and it's also really important to know it for yourself as well. And sometimes that's the best way to understand the hierarchy, or for the staff to understand the hierarchy.

And links will be posted at the end of the session about where you can find out about the rules around consent in your state or territory.

It's a doctor's responsibility to get consent before giving treatment. But providers and supporters of people with disability have an essential role in supporting people to be able to give their own consent, where possible, and in identifying who can give consent when the person cannot.

So, parents are not automatically guardians over 18 and guardianship can't be assumed. Guardians have to be legally appointed to be able to make medical and dental consent decisions guardians also have to have that specific authority in the guardianship order. So, a person who describes themselves as a guardian should provide you with a copy of the guardianship order that appoints them.

Early identification of the likely person responsible for consent can alert you to any likely issues. For example, if that person objects to vaccination in general.

And this is again where providers have an important role in starting and persisting with conversations with this person around vaccination and connecting the person with a GP or other medical professionals if needed.

If the person responsible for consent won't engage in discussion, and as a result the person relying on them to provide consent is at risk from COVID-19, there is still another option.

And in that case, the state tribunal for guardianship, usually called a CAT, is a last resort. This tribunal can consider the situation for the person and can potentially appoint a guardian for a limited time to make decisions about medical consent.

I know that doing this work and maintaining relationships can be really hard. So, I hope that today's webinar help support you in your work. Thank you.

Kellie: Thanks, very much Justine. 

I'd now like to ask Sarah Forbes from Valid to come and respond to a couple of questions that I might have. Thank you. Sarah.

Sarah, in your experience, have you encountered people refusing vaccination on behalf of people with an intellectual disability who aren't actually entitled to do so?

Sarah Forbes: We have. I just wanted to say, firstly, that I wanted to congratulate service providers for the leadership, commitment, and hard work that they've shown to get people vaccinated. We know that the pressure on providers to keep people safe over the past 2 years has been intense, so I thank you.

So, since October, my role has been to reach out to unvaccinated people with intellectual disability, their families, and service providers through the vaccine ambassador project. It’s an extension of the Victorian Government's successful Disability Liaison Officer program.

And the common problem that we're hearing, particularly from providers, is that they're unsure about how to identify the right decision maker and what to do if there are problems – exactly like Justine said. 

So, this has meant that more people are unvaccinated than we would hope for.

There are laws that covered the big decisions. Justine’s talked about that. In Victoria that's the Guardianship and Administration Act. It's worded slightly differently in every state and territory, but its important providers know which decisions guardians make, and under what circumstances they could make them. 

In Victoria family members can make medical decisions without being guardians, and there are instructions for how this can happen under Victoria’s Medical Treatment Planning and Decisions Act – and vaccination does count as a medical decision.

So that's really important to know that there's a law that relates to this, that's important for providers to follow, and it's important for families to know that if they're a medical decision maker, they also need to follow the instructions in the law that relates to making that decision. 

Most people, we’ve found, don't know that.

Some providers are telling us that they're not sure how their work fits with the legislation.

So, I want to give 2 very quick examples of where vaccination has been refused on behalf of someone.

1. There's Bea, who is in her nineties, she lives in a group home and is unvaccinated. She has dementia and emphysema. Bea’s niece was asked by the service provider for vaccination consent, and she declined.

2. George, a man in his fifties, is unvaccinated because his mother refused vaccination on his behalf. In conversation with me, his support staff said that they are confident that his doctor would agree that he is able to decide about vaccination, based on what they know about him, if the information was presented plainly, in an appointment with his own GP.

Kellie: Thanks Sarah, and from your experience, what can be done in these situations to ensure the participant has the right to choose?

Sarah: Yeah, so we gave advice in both of these cases. 

So, for Bea, there are 2 issues: The Medical Treatment Planning and Decisions Act in Victoria requires, firstly, that Bea’s doctor determines whether she can make the decision about vaccination. 

That hadn't happened.

So, in her case, her workers feel very sure that her doctor would say that she couldn't make that decision because of the extent of her dementia and cognitive disability – but they still need to get the doctor to decide whether she can, or she can't.

Assuming that Bea will need someone to make the decision about vaccination, the Act in Victoria would say that the first stop is a legally appointed medical decision maker. 

Bea doesn't have one.

In her situation the Act, like Justine said, shows a hierarchy of people (after a medical treatment decision maker – a legal one). After that sits a spouse, an unpaid primary care, an adult child, a parent, or an adult sibling.

Bea doesn't have any of those people in her life either. So, unless her niece was appointed to make medical decisions, she can't actually make the decision about vaccination for Bea.

So, here, the provider was off to speak with the public advocate for advice. There may well be a guardian involved. There's also a separate process in Victoria where the public guardian can give consent for medical treatment in certain circumstances without a guardian being appointed.

And then with George, again, the first stop was to his doctor to weigh in on whether he can understand and make a decision about getting vaccinated. If the doctor says that he can, which the staff anticipated he would, George can get vaccinated without anyone else's consent. 

It's possible that George's parents didn't need to be asked for their consent in the first place, which led to a really long delay between that first question to his family and him finally getting to the doctor to get vaccinated months and months later.

Kellie: Thanks Sarah, you can see that these conversations can be quite complex. How do you approach those conversations around vaccine hesitancy and refusal with the family of the person with intellectual disability?

Sarah: Yeah, I think it's a combination of talking with the person, the provider, the doctor and the family. 

But most families we're hearing about, and we’re talking to who haven't consented or who've refused consent aren’t firmly anti-vaccination. We've had a few, but on the whole have other reasons.

So, they're hesitant for reasons that we found can be worked through. The key is to find out what the barrier is, and to address them with some good listening, with an open mind without debating people – we found debating is very unhelpful – and providing accurate information and with some creativity. 

So, providers can really help with that, because providers tend to know the families, and they know the people, and they also know who the people’s doctors are, so that also that helps.

Some people are worried that existing health conditions will make vaccination dangerous or they're worried about vaccine safety.

The data is telling us and the information we are receiving from government, is that people who ask their questions, very relevant questions, to a supportive medical practitioner tend to get vaccinated quickly afterwards, either in that same appointment or very soon after.

We’ve also found that conversations that include different ways to get vaccinated really help. 

So, letting people know that in Victoria, they can get vaccinated at home, they can use a virtual reality headset that's provided for them, they can have needle site numbing, they can bring an iPad and watch their favourite show, they can bring in an assistance animal, they can eat while they're being vaccinated, they can get priority at drive-throughs and get sedation at home or in hospital if that's what's needed.

This has been the way that a lot of people have been decided to go ahead. They were stuck on how it would get done when it looked like it was going to be really too difficult to help someone who was scared or otherwise had really complex support needs to get it done.

I guess this goes back to what Justine was saying.

In some cases, if families are the correct decision maker under the Act, which often is a parent, and they are refusing vaccination for their family member, despite the provider having sought medical advice from the person's doctor that for them vaccination is safe, they may not actually be meeting their obligations as decision makers.

In these situations, we suggest that providers get advice from their state or territory public guardian about the next steps. This can include, as a last resort, having a legal guardian appointed. It’s important to know that families who are making those decisions do have obligations and that providers should ask them questions about how they’ve met those obligations before accepting their decision to say no, for example.

Lastly, I wanted to say that we heard this morning that Victorian's with intellectual disability who have NDIS funding have a double dose vaccination rate of 82 per cent, which is 10 per cent less than the general population.

So, whatever we can all do at this point to get the last 10 – 15 per cent of people vaccinated is very welcome. People are, of course, able to get in touch with me or the other vaccine ambassadors or Disability Liaison Officers in Victoria at any time and we're happy to help.

Kellie: Thanks so much, Sarah really appreciate that very important input into how to help make those decisions with, and on the behalf of, participants with intellectual disability.

I'd like to ask Professor Nick Lennox to come forward, if possible, so that we can ask some very important questions also.

Hello Professor Nick, what is the role of the GP in getting people vaccinated?

Professor Nick Lennox: Okay, thank you. Just so people know, I worked as a GP for 10 years and in fact, even talked to a current GP this morning and asked him these questions.

I think it's really true that GPs would see that they have a fundamental role around vaccines and vaccine delivery and have done for years around this issue. 

They have a role in terms of providing information, quality information, scientifically based information and then listening to people and negotiating their concerns around information. Everybody knows this is problematic given the misinformation that's now out there. 

There's certainly a lot of support and weekly updates, and frequent updates, for GPs around this stuff. However, as we know, it can be very complex. 

As a GP, you also feel that you have a responsibility about emotionally supporting people around these difficult decisions. At its very best, general practice negotiates, provides information, and is respectful. That may not always happen, but that's how good general practice is delivered.

And finally, of course, delivering the vaccine. I, and many GPs, are in the situation of actually giving it, following up people, and seeing how they're going.

People should understand and be able to stand in the shoes of general practice, is that it's always time poor in general practice and that very difficult, I think.

I have enormous admiration for high quality general practitioners who deliver high quality on a day to day basis. It is the most difficult job I've ever had without doubt. So, understanding the pressures of disability organisations that GPs are under, and this has been made much worse by the pandemic, and they are concerned about, of course, getting it themselves and giving it to their family – and a whole bunch of other consequences for their staff and their service. So yeah. A big role. A global role for GPs.

Kellie: It sounds such. Given the breadth of the role of the GP, what is the role of the GP within decision making and capacity to provide consent?

Nick: Again, I think this is fundamental to general practice and I'd almost go as far as to say for most GPs, they have done this many, many, many times and it's not just for people with intellectual disability. Of course, there's numerous people as we've heard somebody with dementia who you have to go through this process, you have to provide the information you have to assess if the person does really understand, and understands the risks and the benefits and then can communicate back to you clearly the choices they're making.

And that, that sounds very easy, but, in fact, as we know it can be quite complex. And every individual is part of the wider family network of people. So, negotiating with families is not unusual. One of the delights of good general practices is this bond and this development over time with families and getting an understanding of how the family dynamics may play out.

Kellie: Absolutely. What processes or techniques do you use to communicate that importance of vaccination for people with intellectual disability or their support staff or their families?

Nick: You know, it's a really interesting question. And the GP I talked to this morning, I actually asked him this question specifically, because it actually depends on the level of trust that this person has in you and vice versa in fact.

If you have a long-term relationship, which was one of the most beautiful elements of general practice and keeps GPs engaged and enthusiastic, you then have a build-up of trust and a shared understanding of what's important and the nature of the person. Then it's using that trust to discuss it, to assist them, to obviously communicate clearly and appropriately for them.

Now people tell me that GPs are not great communicators. I can tell you as an examiner of GPs and medical students that it’s fundamental to their training. We ram it down their throats in medical schools. And, we try to encourage people to communicate well, to provide information in an accessible form. I’m the first to acknowledge this doesn’t happen always, but it absolutely is part of the medical course and has been for many, many years.

The other thing is, it's very difficult to explain risk.

And I think we know if you've read broadly around risk, it's very hard. As human beings we don't assess risk well, and so thinking of models that might help you communicate, ‘what is the risk to you?’ Sometimes you have to go to absolutes, and it's clearly a huge benefit to get a vaccination compared to a risk of getting COVID, which we're all going to get at some time. And sometimes you just got to use big words and simple words.

But for some people, you’ll need more data around that, and that you'd again have to assess from individual to individual.

Kellie: Thanks, Professor Nick and I really appreciate your time and insight into the role of the GP, and hopefully for the service providers on the line an understanding, or an expectation around what they can expect from that interface with GPs for their participants and clients. 

We might move along to Melissa Clements, representing the NDIS Quality and Safeguards Commission, so that we can talk about the role of a disability service provider within vaccine hesitancy and consent.

Hello Melissa, what is the role of a disability service provider in identifying a substitute decision maker?

Melissa Clements: Hi Kellie, hi everyone, this is such an important conversation and I also want to just recognise the efforts of providers over the last couple of years, in keeping people with disability safe and continuing to deliver supports, sometimes in quite challenging circumstances and it's comes down to that really solid planning that providers have done prior to being faced with an infection that they've been managing their way through. So, providers have got a lot of roles in this space.

But, in terms of identifying substitute decision makers, I think there's probably 4 key things that I would focus on and it echoes a bit of what Justine and Sarah have already touched on.

Firstly, it's really important that providers fundamentally recognise the rights of people with disability to access healthcare and services that are available to all citizens. And, so that obviously includes access to vaccinations in this time.

It's also important that they recognise that the rights of people to determine their own best interests and to exercise choice and control in their decisions, and also to participate in all decisions that are going to affect them and to be an equal participant or an equal partner in that decision making as far as that their capability to participate in that decision making goes.

The second thing then, after recognising those rights, is to know the law in the states or territories that you operate in around consent and decision making. It's really important to know who is legally authorized to make a decision for another person.

We've heard about those legally appointed guardians and knowing who they are, and knowing and understanding who else can be a decision maker for another person where they're not able to make that decision themselves.

The third point then, relates to the people that you support. That's to be really clear for each person who it is. Who's legally authorised to make that decision. If it's the person themselves, what's your role to support that person to make those decisions? Supporting them with information, supporting them sometimes to go and see their GP for example, in order to have that conversation to make their own decision about vaccination, but also being really clear where there is another lawfully appointed decision maker who that is or who else can make those decisions.

Documenting that information in a participant plans or in the documents that are most likely to be utilised by the workers that you are employing or engaging. It's really critical that you also ensure that your workers know, and understand, who is legally authorised as a substitute decision maker for participants that they support.

And then, the fourth point is when, in doubt get advice. Know who the relevant guardianship body is in the states and territories that you operate. Seek advice from them if you're uncertain about who can make a decision. Or, in fact, if you're uncertain about the decision that may be being expressed, or views, that might be being expressed around decisions for vaccination.

So, getting advice about who can make the decision, and whether there are particular circumstances where a legally appointed guardian should be being considered or advice about that.

Lastly, just for NDIS providers that are here with us today, all of these things are entirely consistent with the NDIS Code of Conduct. The Code of Conduct covers all providers of NDOS funded supports and services, and all workers who are employed or engaged by providers. In particular there's a provision under the code. It's actually the first point in the code, which is about acting with respect for individual rights. It includes a specific reference to rights in relation to decision making, in accordance with applicable laws and conventions.

So, it is really important that all providers registered or unregistered know and understand those are really important.

Kellie: Yeah, fantastic, thank you Melissa. When it comes to the decisions that disability support workers or providers need to support, are medical decisions different from other decisions?

Melissa: I think Justine touched on that earlier in the session. Most state and territory laws around guardianship make specific reference, or specific provision, for decisions that are about medical matters and health matters differently from other types of decisions, such as accommodation or use of other services.

So it is important that providers know and understand when we're talking about health matters and access to COVID vaccination or decisions about having the vaccination that they may be different decision makers that need to be involved for the participants that you support, other than those that might be involved around their decisions about what activities they're engaged in, what services they use, or their accommodation arrangements.

It’s important to understand the difference.

Kellie: Really important point. Thanks so much for your time, Melissa, and we look forward to hearing some questions for you during the Q & A session.

I'd like to invite Catherine Sharples to the floor please. 

Catherine, we’re really keen to understand from the perspective of a disability service provider, what is the process that you go through to ensure that consent is obtained for, or from, a person with intellectual disability.

Catherine Sharples: Hello, thanks, and hello to everybody. So, speaking on behalf of Scope we saw our role as support.

So, one of supporting people to go through some of the processes that you've just heard from all of the other speakers, to be honest. The best way to do that for us, was to start with a really comprehensive plan.

So, that was actually sitting down and working through understanding the law, as was mentioned earlier, so that we could then inform our staff to begin with to provide them with information on role when it comes to informed consent. Not just their role as staff, but the role of the decision maker, the role of the health practitioner, the role of the advocate, the role of the customer themselves and their right to make choices, and the role (if necessary) of guardianship bodies and in Victoria the Office of the Public Advocate so providing staff with information was a key starting point for us.

And that's because largely across the services we provide, most of our staff are not health service providers, and do not work in the space of needing to understand informed consent when it comes to medical decision making on a day to day basis. So, we found that there was a really big need to uplift staff capability to begin with.

And then to work with the person. So, that means identifying who that medical decision maker is going to be for the person. And in most cases, it was informal. So, not a formally appointed person.

We found that across the spectrum of people that we work with the easy end are the people who have a formal decision maker, or are making decisions for themselves, and the grey part in the middle where people needed to have some support to make a decision where we had to put most effort. That involved making sure that they had access to information, and that that information was accessible and not just for the customer, but also their support circle, and whoever is their identified decision maker, and also making sure that the information wasn't just the generic information about what COVID-19 is or what a vaccine is, but was also a situation that was specific to the person with whom we were talking, understanding that, to pick up on something Nick said, we were supporting people to assess risk - and risk is not rational, risk is emotional - and so we provided people with information to help them look at risk to themselves, depending on what their own complex healthcare needs were and in doing that to facilitate them to visit their primary physician during the process.

And identifying that some people didn't have a primary physician with whom they receive that support. And some people as, was mentioned earlier, also don't have identified decision makers. So, helping them to access advocacy or access decision makers through whoever the local jurisdiction is for guardianship or advocacy.

So, after providing all of that, and ensuring that they were able to make an informed consent decision, or their decision maker was able to make that for them, then facilitating and supporting them to actually access the vaccine in many of the ways that a Valid representative described earlier. That was very situational again, and for some people that meant going to their regular GP, for other people that may be taking a while to go down a pathway that was going to support them with sedation – or whatever they needed specifically. 

We did try and tap into the normal flu vaccine program pathway. We also reminded staff and customers that although COVID-19 was much more frightening to many of them than the flu, the pathway for receiving their vaccine would actually be identical to one that they've done year after year after year. 

Kellie: That's a really great point. What you've described in terms of the process sounds like it can take quite a significant amount of time for some people. I'd be keen for your thoughts on how long does it process like that take? 

And then what, what does the best practice example look like?

Catherine: the process can take anywhere from, our experience was, immediate to over 6 months.

And part of that is, because in order to deal with hesitancy, we found the best way to do that was to go back multiple times to the people in their support circle. And that's because we were following the philosophy of information from a trusted source.

And quite often our staff at the coal face were people's trusted source. So, supplying information, coming back and working through fear, and working through issues on a very situational basis. But sometimes it took more than it took up to 6 months because if you follow the informal guidance around decision making for medical decision making, you will come across an adult sibling quite often for many, many of our customers. And that person may have more than one adult sibling.

And so, then you're left with having to actually be involved in or support family negotiations with that person, and often needing to seek support from public advocacy, or from the OPA, or from guardianship office in the state to support what are actually essentially family dispute arguments.

So, the longest ones were usually because they were caught up in other family matters. And, people were perhaps not recognising what their role is as the supporting person with intellectual disability. 

Best practice obviously looks like a person who has someone identified as the person that will be supporting them to make medical decisions, has a trusted physician as part of their general every day and that they were able to tap into both of those things quickly.

Because we found that tapping into those things was not quick, particularly during a pandemic when everything was closed down, and that we often had people supported by interstate relatives. That involved a whole lot of sending things on emails, and asking people to print off consent forms, and linking people together over Zoom meetings and linking doctors and decision makers and customers together so that everyone can have a conversation.

So, best practice is obviously, where all those things came together well. 

Kellie: that's an incredibly important point, and I think an experience that providers across the board have come across in terms of participants and people with disability, 

not having a trusted physician, or a known legal decision maker readily available to support staff. I think that’s something that can be prepared ahead of time and revisited as a matter of daily practice for organisations that we have on the line today. So, thanks so much Catherine. 

I think a great segue into bringing Heather McMinn from the NDS to the floor to talk about the sector more broadly. And Heather, being mindful of time, what has NDS learned from the sector throughout the pandemic?

Heather McMinn: Thank you Kelly. Look, we've learned a lot and I'm coming to you particularly from Victoria. That's where I've worked as the most focus, but the things that we've learned we've shared across the states and territories and continue to do.

I think a lot of the issues have been picked up by others in the panel. But one of the things that we heard from providers was because a lot of the information was actually directed at the general public, it was hard for people with an intellectual disability to really understand or question it, regarding ‘I really want to talk it through with someone’.

And it's great if you've got a trusted GP, and we certainly were encouraging any providers who were concerned about, ‘well where do we go?’ We were saying if the person has got a trusted GP then that's the best person to go to because they will understand and know that person and, certainly, to go with the support person if they do have one that they trust. 

And sometimes, it was the workers that were going with them. And we knew that support workers were very concerned about not influencing someone with their decision around vaccination, but rather trying to be very respectful of a person's own choice and rights within this whole process. But enabling access to appropriate information and assisting with asking those questions. This really picks up with what Catherine was saying is that this is a process. It didn't always happen overnight, and for some people they needed to ask those questions multiple times or have different formats of information. Whether it be video, whether it be different vaccine champions talking to them.

NDS was involved with the vaccine champions and ambassador program in Victoria and there was some great podcasts and videos made where people with lived experience, younger and older, males and females, people from different ethnicities, talked about what their experiences were and why they were actually choosing to have a vaccination. 

We were really encouraging use of these even just to start a conversation, with an individual or with a group of participants, or with family members – that kind of thing. We’re certainly hearing that there was a lot of fear that came out of the mixed messaging early on. And unfortunately, because social media is so good at short sharp messages, those short sharp messages that were alarming and dramatic and often not factual were the ones we were hearing people quoting. 

I live with an adult with an intellectual disability, who lives independently on my family property. He was continually coming to me with those negative messages because he was hearing those and wanted to be reassured that having a vaccine was safe. He did in the end choose to have a vaccination. In fact, he and I went and had ours together and that was a really positive experience. 

The other thing we found was that for a lot of people the booking system was not easily accessible. While there has been a lot of change in that and there are now lots of options I think, looking back, it would have been better if those different options for people with different lived experience with disability could have been available earlier so that when people were interested in getting it they could have go and set it up quickly rather than sit back and wait, and become more and more concerned. 

My big lesson that I’ve heard all the way through is that appropriate, accessible, person-centred approaches. These are all things that we know and allow people to make consent for themselves. Or, if they are having some sort of support for consent that they are the appropriate person. 

Kellie: fantastic and you mentioned a couple of resources within that, but I would be keen to understand, are other resources that you've found particularly helpful during this time?

Heather: There's lots of wonderful resources. I certainly want to shout out for the inclusion Australia, COVID19 vaccine consent video. I think that's fantastic.

The Council for Intellectual Disability, we've often referred to those. There are different ones. We sent information to the organisers today and they're going to list some of those resources. NDS also we have a COVID Hub, and we've been trying to keep up with listing any great resources that we find. There's lots out there, it's hard to keep up with them all, but there are really useful targeted resources for people living with an intellectual disability where people speak from experience around why they've made the decisions that they have.

Kellie: Perfect, thank you so much for them Heather, and thanks to all of our panellists for answering my questions 

We are going to go to a broader Q and A now and you'll notice that we've got a couple of questions posted in Slido.

I would encourage anyone in the audience to post their questions should you have any, and if we don't have time, we will absolutely come back with a written response.

I can see the first question posted from Anonymous is probably most appropriately answered by me as a representative of the NDIA, but I will also throw to either Sarah or Justine for an extended response. 

From the NDIA’s perspective, an NDIS nominee, whether it be plan or correspondence nominee is not necessarily a legal decision maker on behalf of a participant and that assumption can't ever be made.

So, I would ensure that if you are representing a participant and a plan nominee exists that you also clarify whether that person has the decision-making authority or ability on behalf of that participant.

Sarah, or Justine, anything else to add there?

Justine: basically, Kelly that's right. And, the state legislation covers medical and dental consent. So, a nominee may just happen to be the same person as a person responsible, but that's a coincidence.

That's not because of their role as a nominee.

Kellie: Perfect, thank you. Would have been embarrassing if you got that one wrong!

Janet has a great question from Amaze:

Are you aware of any good resources in Easy English to assist the person with intellectual disability to make an informed decision about being vaccinated?

So, there is actually a great Easy Read document that's just been published by the Department of Health in relation to consent.

And I would point you in the direction of the Department of Health website. Does anyone else have any other input that they would like to add there?

Justine: Sorry, it's Justine again. Heather mentioned Inclusion Australia has a resource. Council for Intellectual Disability (CID) has Easy Read and video resources.

I believe most Inclusion Australian members will have some information on their websites in their state. So, hopefully that can all be in the links.

Kellie: Perfect, thank you. Justine. This is an interesting question from Anonymous. Can we enforce on vaccinated participants to wear masks during service provision? 

Melissa, I'm going to throw to you for that one.

Melissa: Short answer that would be no. The provider can’t require a participant to wear a mask.

It's really important that providers as part of their planning for delivering supports just taking into account the potential impact of participants who may choose to be vaccinated or not vaccinated and plan to deliver their services thinking about universal ways maintain safe service delivery.

If you're aware that a participant isn’t vaccinated, though, most service delivery can be planned and quite safely delivered by really thoughtful use of PPE, training for the staff around the use of that PPE, and talking directly with participants who are being supported about obviously their choices around vaccination, but also about the arrangements for delivering their services if they are going to look a little bit different, or going to be provided a little bit differently because of some of those planning considerations.

Kellie: Thanks Melissa, that was a good expansion on a short answer.

Another good question here: what happens when participants refused to attend appointments, we can't force them to do it and it's leading to behaviours of concern.

I'm going to ask Sarah, if she's there, just to talk about in your experience, whether there's been any particular helpful suggestions that might be able to be used in this situation?

Sarah: I can only speak generally, because I don't know the whole lot of the situation, but I think it sounds like refusing to attend an appointment, there are 2 kinds of appointments that could be about. 

One is not attending appointment with their GP to talk about vaccination. That might be one issue, that can potentially be resolved by not having to leave the house to do that.

I guess one of the things we've all found having, well for me I’m in Melbourne so have been locked down for almost 2 years off and on, is that going out has become an issue for people when it has actually becoming unfamiliar process. So, it's worth taking that into account.

Is it possible to have an appointment by telehealth or video health? We've still got that access in Victoria.

But also, is it possible for a GP or another medical practitioner that they know and trust to come to them? That's an option. 

Depending on what state you're in, if the person doesn't want to go out to have a vaccination appointment, you can have vaccinations delivered to you in your home in your most comfortable chair with a bowl of ice cream. We've had a few that have gone that way.

The general view I would have is it's really about getting to the bottom of why the person is unhappy, why they are communicating through their behaviour that something isn't working, and whether that's about talking about vaccinations. People are tired of talking about it especially if they're still unvaccinated, which is fair, and sometimes pitching the conversation differently. So, we've had some circumstances where, exactly as Catherine was saying, the situational conversation is more helpful.

So, talking about the benefits of being able to go back to some of the things they used to do, 

there are people who used to go to the pool every week can't go, it’s very frustrating. Trying to pitch the information to people about risks and benefits in a very individualised way can help with dealing with some of those irritations that come out of talking about vaccines and medicines and appointments, which can get very monotonous for people.

Kellie: absolutely. Nick, did you have something that you wanted to add there?

Nick: I don't think I can make a better answer and then I've just heard, really. 

Kellie: I'm glad that you agree with Sarah’s response 

Sarah, this is probably one for you as well as Justine, in terms of Janet's previous question about those resources to support participants or people with intellectual disability to make the decision about vaccination. Is there any way to ensure that the participants final decision is honoured? 

Sarah: Well, that's it's again a tricky one without maybe extra detail, but if someone's made the decision to get vaccinated there shouldn't be too many reasons why the decision isn't honoured. 

I think one of the issues we've heard from providers is, and we've heard other people say this today, is not wanting to make enemies of families.

And I think absolutely, like, of course, you don't want to. I've been doing advocacy for 7 years. I know what it means to have families who consider the person assisting as an enemy and it is no fun. And it's to be avoided at almost any cost.

But I guess what I've been talking to providers about is, if it's a family member in particular who is refusing vaccination or creating unnecessary barriers that, as we've heard here today, the first allegiance to the person's right to have healthcare. And if that person is also saying they want to be vaccinated then families being in the way is less of a concern than honouring the person's decision. 

Now, that doesn't mean that providers don't have to do extra work to be able to try and navigate that with families, mend relationships with families. But sometimes you find yourself in a situation where you're going up against the family to do the right thing by the person and to do what the person wants you to do. As miserable as that is, sometimes that's the way through.

Kellie: this leads into the next question, which is ‘what about when in, that situation, it is actually the medical decision maker or nominee that is refusing. How would you go about overcoming that particular situation?’ 

Sarah: One of the benefits of being familiar with the legislation is that there are requirements in the legislation that a medical decision maker has to follow.

So, in Victoria, they have to consider what the medical advice is. So, that would require the person making the decision to have spoken to the person's treating physician, taken their advice. If the physician is saying ‘yes, it is safe for this person to be vaccinated. Let's get this done as soon as possible’, and then the family member or decision maker has to consider what's in the person's best interests and what facilitates the person's social wellbeing. So, if not being vaccinated means you have to stay home all the time because most of the places you like to go, won't let you come anymore... It's unlikely that that would be considered to be in the person's benefit.

There are steps that decision makers have to take, and I think it is one of the things that would be really beneficial for providers to have a look at their state and territory legislation around medical decisions.

Because it will tell you what the family should have done in coming to their decision. And it's a question that I think providers should ask families ‘oh, when you've made this decision, have you considered these 3 things?’

Because those things are laid out in the legislation.

And if you as a provider haven't asked those questions, but you are taking their decision as the final answer, especially if the decision is ‘no, we're not going to consent to the person being vaccinated’ then there's questions I think about whether providers have fully exhausted their options and done everything right.

And so those questions that sit within Acts in states and territories are really important for people making decisions on behalf of other people to be able to answer.

Kellie: Very well said, and here’s another spin slightly outside of participants with intellectual disability.

What happens if a parent refuses to consent on behalf of, say, a child without an intellectual disability?

Sarah, any thoughts there?

Justine: I should jump in and say the legislation we're talking about applies to adult 16 years and over. So, perhaps this question, might be a little outside of that. 

Sarah: I couldn't answer that one for you on the spot. 

Kellie: No, no, that's okay. Perhaps we can take some that question on notice and provide some resources in relation to that one.

Here's one for you, Melissa.

Can we ask for the participants to provide evidence of their vaccination status?

Melissa: it probably goes back to the, the previous question that that I answered.

You can talk to participants and you can ask participants about their vaccination status, but you can't require them to provide you with personal and private health information, unless there's some really valid basis for requiring that information. If you have some particular mandate that you’re required to meet under a public health order for example that requires you to obtain some of that information. But without that lawful reason you can’t compel or require a participant to disclose that information.

Kellie: Thanks, Melissa and one more question that we have in the chat is ‘what's the process where participant doesn't have an intellectual disability but it's choosing not to get vaccinated’?

And I guess this one is a fairly standard response that vaccination within Australia for participants of the scheme is a choice. It isn't mandatory and for those participants that are choosing not to become vaccinated, the conversation really needs to be with them around encouraging them to access information, particularly from their medical professionals to make an informed decision and to ensure that they understand - not in a coercive way - some of the consequences of not being vaccinated, and Sarah has spoken to this in terms, and Catherine, from the perspective of what are the activities that that person may be required to sit out on given their unvaccinated status.

Did anyone else want to add anything to that response? Yes, thank you Heather.

Heather: I just wanted to add that we’ve been really encouraging providers too, that this is not a deadline.

This is an ongoing conversation, and that you want to keep the door open that someone may change their mind down the path. They may want to have the conversation with their GP or access some resources.

So just to keep the door open and encourage people to seek information as they need it.

Kellie: Fantastic, thank you Heather. And thanks everyone on the panel for your attendance and fantastic input today.

I think that the information that has been forthcoming is not just applicable to the pandemic. Information regarding consent and decision making exists in the daily life with participants of the NDIS, particularly those with an intellectual disability, and their families and support providers.

Hopefully, you've gotten some information from this particular webinar we will be making the recording and the materials referenced, including any links available on the Department of Health’s website after the event.

And we thank you for your time today.

Thanks everyone.

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  • Kellie Maloney, National COVID Operations Coordinator, National Disability Insurance Agency
  • Justine O’Neill, CEO, Council for Intellectual Disability
  • Sarah Forbes, Advocacy Manager & Vaccine Ambassador, Valid
  • Professor Nick Lennox, Senior Medical Adviser - Intellectual Disability Health, Australian Government Department of Health
  • Melissa Clements, Acting Registrar, NDIS Quality and Safeguards Commission
  • Catherine Sharples, Group Manager Quality and Safeguarding, Scope Australia
  • Heather McMinn, Disability Sector Consultant, National Disability Services

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