Transcript: Rights and Entitlements NAS Ireland

Nicola Welford (00:00:01):

Okay, good evening guys. Thanks very much for joining us tonight. We appreciate you making the time to meet with the National Advocacy Service. So we have Mary Carroll here, who's the senior advocate from the Cary and Southern region who's going to facilitate this session. So thank you very much, Mary, for giving us your time and hopefully a few more people will be joining the call as time progresses. But I'm just aware of the fact that there are people here waiting since seven. So I think we'll make a start, will we, Mary?

Mary Carroll (00:00:29):

No problem, Nicola. No problem.

Nicola Welford (00:00:33):

I know I call CPF Ireland there, but some of you probably already know me, but I'm Nicola Welford and I'm the community communications officer with Cerebral Palsy Foundation Ireland. So it's lovely to meet you all and see some of the faces that are here as well. So thanks very much for that. So Mary, I'll hand over to you if that's all right.

Mary Carroll (00:00:49):

No problem. Thank you very much. And it's lovely to meet you all. I know it's a rotten evening out there, so it's sort of great that you're here and not beside the fire watching telly on an evening like this. So as Nicola introduced, I'm a senior advocate in the Southern region. I'm going to, I suppose, just fly through a few slides quickly. Well, not a few, but different slides that will explain a bit more about NAS and about our role and about some of our work. Now I know the title of the presentations around entitlements, but to be very honest, it's probably a lot more about rights and that's a big focus of our work. And I suppose there will be a chance to talk about, I pose questions that are coming up. If you do need to check anything as we're going along, obviously that's no problem as well.

(00:01:44):

I know that the organization is based, or I suppose the attendees are maybe a mix of people themselves with cerebral palsy or with family members and parents of people under 18. So I suppose just to state, I'll try and keep it as general and as relevant to everybody as I can. But we are coming from, in our role, we do support the person, the adult person with disabilities rather than necessarily the family member. So we might have a slightly different perspective on it, but as I think the piece around rights is probably relevant across all situations anyway. What I'm going to do is to share a PowerPoint if that's okay, and I'll try not to keep it too formal. So especially when it's a smaller group, I think we try not to be overly formal on it, but can everybody see that okay? Yeah. Okay, that's grant.

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So Steven, like I say, we're just going to go through the organization around the basis for advocacy, a social policy focus that we have, and I suppose what'll come up a bit today is around the Assisted Decision Making Act. And I don't know if this is something that is well known to you or is new for you, and it will cover it in a certain amount of detail. I do think it's such a new area and covers so much and so important. It might be something that you'd want to do more work on separately. But like I say, it's coming up a lot in our work, so I will be talking about it. So just to give you background about where we fit into the picture, we're around a while but relatively new in the scheme of things in terms of disability services. Back in 2005, there were pilot projects that were set up around the country.

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They were funded by what was CORLIA and then became Citizens Information Board. Citizens Information Board is a state agency that is under the remit of the Department of Social Protection. So I suppose they were given a statutory obligation to provide advocacy. There was a piece of legislation, the most recent one in 2007, that I gave them a remit to provide advocacy for people with disabilities. So we were set up under that in 2010 until beginning 2011, we became a fully fledged national service and moved away from the pilot project phase after evaluation. So the idea is that it's fully professional. So all staff, we don't have a volunteer model, it's fully paid, fully employed staffing. It's independent and it's free and confidential. So we've got 50 staff across Ireland. And then in 2019, we took on another wing. It's called a patient advocacy service. They do hospital complaints in the public hospital system and also in nursing homes.

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And their remit is expanding as they go along with potential to move into mental health services as well in the near future. They're funded by the Department of Health. So they're separate to us, but it's sort of a funny arrangement, but they're part of the family anyway. So this is sort of our related organizations that we're linked to. And so while you might not recognize NAS, you might recognize Citizens Information Service and MABS and SLIS. So they're all under Citizens Information Board. So generally speaking, that's a map of what our organization looks like nationally. As you can see, the southern region where I'm based in covers over as far as Wexford. So generally speaking, you have one advocate per county in situations, places like maybe Cork and Dublin, there is more advocates based on the population. But overall, I would say we would feel very under-resourced, generally speaking, given that we're set up in 2011 and the level of demand has increased exponentially in that time and we haven't really had any increase in resources.

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So we're yet another organization that's shouting for more, but that's generally a visual of where we're based. So as I say, the basis where we take our part remit from, I suppose our raise on debt is from Citizens Information Act. The Health Act provides regulations for older people's designated services. There's also regulations that govern disability services. There is under Assisted Decision Making Act, there is a role for independent advocates and a code for independent advocates. There's a HSC consent policy, a national safeguarding policy that also state the role of advocacy. There is a wasted lives report that relates to people under 65 in nursing homes that the ombudspan was very concerned and is still very concerned about the amount of people under 65 who live in nursing homes. And again, the role of advocacy there. And then the UNCRPD was a very big development, I suppose, in general around rights in Ireland and rights for people with disabilities.

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And I suppose from the very beginning, we have always aligned ourselves with the UNCRPD before it was even ratified. We've adopted the values of it, including the term will and preference that I will talk about later on, but we've always spoken about it, but it does come in under the new Assisted Decision Making Act. And the Assisted Decision Making Act was, I suppose we couldn't ratify the UNCRPD for such a long time because our decision making legislation was so out of date. So it just would've been such a discrepancy that had to be sorted. So the Assisted Decision Making Act also adopts some of the values of the UNCRPT like will and preference. So look, obviously for adults who are over 18 with disabilities, that's extremely broad. And given, like I say, we've a finite amount of resources, we've had to really try and prioritize who's accessing the service to make sure we're available for those who need us the most.

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So we generally speaking would look at people who if they live in the community, but they might be isolated from their community and services, have communication differences. So in that when we talk about communication differently, sometimes that's people who might not communicate verbally or might not have very clear communication where it's very understood or that they're given very clear instruction. And in which situation you're looking at, maybe they're dependent on other people taking extra time to recognize those differences and to understand the person's communication style and to make the effort to really understand what the person might want when they're not able to tell them directly. We look at people who are inappropriately accommodated. That can be, like we've already mentioned, nursing homes, people under 65, that's a big one. Then we might have people who are, a classic one might be people living in services where they're not geared to support them, might have more specialized needs, or people who are living with people that they absolutely hate and there's awful sorts of issues, and their environment really contributes to a lot of distress.

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And I suppose then we'd be looking at that as an inappropriate accommodation. People who live in residential services and attend day services. The reason that we look at those situations is you're usually looking at people who have a lot of other people then involved in the person's life in terms of information, decision making, providing supports so that if decision making is happening, they might end up with a lot of different people who have views or opinions or are taking certain positions on how things are done. So that could include staff, key workers, managers, social workers, maybe nurses, could be external services and family members. So somebody might end in a situation where there's a lot of people involved. And then in that situation, that might be type of scenario where it's harder for the person's own views to be recognized, especially if it's not something that everybody else wants or everybody else thinks is unwise or that they don't agree with.

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It can be harder to speak up or to have your individual views known or recognized in that situation. So that's where advocacy might be important. And then having limited or informal or natural supports. So natural supports are, generally speaking, the unpaid supports to people who are in somebody's life and are a network for somebody. And that can be, I suppose, some people often have, especially if somebody, we might come across people who have grown up in services and have had no real external contact with anybody and the only people in their lives are fully paid support people, support professionals. So there's always, I suppose the more somebody has a stronger support network, obviously the better. Generally speaking, these are our statistics.

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A lot of our work relates to decision making, so we would have a lot of focus on areas or types of disabilities where people might be more likely to have their decision making questioned or not supported. So you can see, I suppose, and often there might be two disabilities that you might have somebody with a physical disability, but also an acquired brain injury or an intellectual disability. We can sometimes have crossover where somebody has a mental health issue, for example, in autism or likewise intellectual disability, autism. But intellectual disability is our largest area of work and then physical mental health and autism and acquired brain injury would be the next largest categories there.

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Generally speaking as well, then we try and categorize the areas of work, housing and living arrangements, residential healthcare settings, they're very high in terms of the amount of work that are the types of issues that come up. There are a lot of housing issues that are there for people. Sometimes that's around residential healthcare settings, again, that could cover things like people living in nursing homes or congregate settings and not being able to move or being inappropriate settings. Capacity building and communication, again, it's around decision making a lot. Decision making is where we cover ADM work. It's very new, so these are older figures that it's increasing all the time in terms of the type of work we do. Financial measures and issues are down there as well as a big piece of work for us. And often, like I say, these might cross over and somebody might have issues across a few of those areas, like say safeguarding might cross over with financial issues, might cross over with decision making.

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So these are all statistics, to be honest. I'll probably just skip through them. But what I would say is generally speaking, we're getting busier every year. We have a national phone line that operates from 10:00 until 4:00 every day. And our administrators take a lot of calls that then get directed out to advocates or if the administrator get a lot of information calls where people aren't sure about some general issues and they're not sure where to start looking, how to access information. The disability sector is very hard to know where to start. Sometimes there's how do you get into it? Who provides services? Even if you think about say the HC, you've got some services provided through primary care, some are provided through hospital settings, some are provided through disability services.

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So you might have somebody who's dealing with primary care and know that there's a whole section called disability services, which might only be a couple of people in an office, but it's still a section of the HSE. So we get a lot of calls for people, I suppose, trying to figure out where to start dealing with something. Unfortunately, we get a lot of calls from parents of people under 18 who are also trying to look for supports. And I think it's very recognized at this point that there is advocacy also needed in the area for under 18s. But unfortunately, it's not within our remit. We are just so absolutely stretched, but we often do get calls related to that. So generally speaking, like I mentioned earlier about will and preference, this is something that I suppose we really lean into and is now enshrined in law in the Assisted Decision Making Act.

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It also actually was adopted during around COVID vaccinations as well in legislation. But we have our own code of practice, which is around upholding person's will and preference. And just to say, we would make a big distinction about this being different to best interests and upholding will and preference is very enshrined in rights. And like I said, UNCRPD. So it's what the person wants and prefers fairly straightforward in a sense, but then it's a bit about if the person couldn't tell you directly rather than somebody saying, "Well, I think this is what you should do in your best interest. I believe this." Instead, I shifted to what do I think you would want and prefer based on all the knowledge that's there about you, about what's known about your likes, your dislikes, your preferences, the things, how you communicate, how you show you're happy and sad or what are the things that are important to you and really trying to build a picture around person and try and base decision making on that rather than somebody just making a judgment based on their own values of what they think is important or should happen.

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So I would say, and I'm mindful again that there's parents here and that this is part of a transition I think for family members. And I don't know how well it's done to be honest, because say we pick up the picture when somebody turns 18, but that lead-in time, you're looking at where as a parent or a guardian, you're very much focused on doing what is best and making decisions. Again, you might not call it best interest, but often is what you think is best and you're asked and expected to do that as a parent of somebody under 18. But then as somebody turns 18, they're into full adulthood and they have a full legal entitlement to legal adulthood and personhood. And I know I'm talking very jargony here about all these things, but it's the idea that somebody is an adult at 18 regardless of their disability.

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And especially the United Nation Convention on rights for people with disabilities really does stress that somebody with disabilities has their rights regardless and somebody having a disability doesn't lose their rights because they have the disability and that they should have the entitlement, they should have what they need or their right should to have support to exercise those rights. So if it's managing money or if it's living independently or different things like that, it's not say, "Well, you couldn't do that or you shouldn't be able to do. There's no way you can do that." It's like, "Well, yes, you have the legal right to all of these things. What needs to happen in order for you to be able to fully exercise your right and puts the emphasis on support piece?" So I think that's part of the transition into adulthood as well. That happens for everybody where you start to become more testing out or taking on more and more decision-making as you happen.

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And it's not a case, it shouldn't be a case that somebody's absolutely.

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It shouldn't be the case. I think the fear is sometimes people hear when I speak about these sort of things, that that means that somebody gets abandoned to make their own, that they're just left to their own devices and say, "Well, you're 18, so off with you." That's not the focus, and I really want to say that it's about what does somebody need in terms of supports, but also ensuring that rights are met. So as I say, this is where we talk a lot about willing preference and we're sort of, I suppose since the Assisted Decision Making Act came in, it's a bit more recognized as a term and we're glad of that because I think, like I say, what I'm saying is not so much about entitlements, it's probably about rights, and I think this is a fundamental one. So we really try and work with the person, and if we're meeting with somebody, there's obviously a lot of very important people in somebody's life that can be staff, but it can be family, it can be friends, and we'd always try and build a picture of the person, but we'll always be trying to look at it from the person's point of view and what their willing preference would be in a situation.

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Things that we don't do generally in our role, so our role is representative, it's one-to-one, so we don't do group work. So even though sometimes there is a very important role for group advocacy, and we would probably love to do it, again, it's just around resources. So representative advocacy is about where we support a person to represent their views and wishes and preference, and where that's not possible for the person to do it directly, we will represent them for the person. What we don't do is we definitely don't come in and tell the person what to do. We're not somebody who comes in and say, "Now this is what you should do here. Now this is my advice to you." We very much respect that somebody will need to do their own journey and support their decision-making around that where possible. And then we don't tell the persons what decisions to make.

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We can't make decisions on the person's behalf. We often will get inquiries in which are sort of like, "Look, this decision makes me made. Can you make it for the person?" And we have to be very clear we can't. We don't give legal advice and we don't act without the person's permission. So we follow an advocacy plan that we agree with the person. Again, depending, sometimes we have to work in the vital interests of the person where the person might not be able to, I suppose, directly instruct us on some people, but we take our instruction in terms of other ways that the way the person communicates and then trying to identify, we would look at the person's rights in the situation. We do things like looking at ordinary life principles, which would be looking at literally what would somebody expect in terms of an ordinary life, in terms of access to money, family, fun, community, activities, things like that.

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And like I say, we might sometimes spend time, what we call witness observer, which would be maybe sitting and just observing what somebody's life is like and building up a picture of what that's like. And sometimes it can be the simplest things of somebody who's really, really sensitive to noise, living with somebody who vocalizes really loudly that are clearly on the last nerve at this and it's causing huge distress. And sometimes we can just offer insight into what somebody's life might look like from an external point of view. So these are sort of things that would inform what we would work on. And other times then it's very directly agreed with the person about what we are agreeing to work on, but it is what we call issue specific. We're not coming in doing key working, we're not coming in taking over and trying to sort out every.

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I think especially for a lot of people who are used to key working where it might cover a lot of areas in a person's life. If we're, for example, coming in dealing with money, we're just dealing with money. We're not getting involved in everything else, so we try and keep it very specific. So examples, whatever might get a staff member contacts us in support of a person where a conflict of interest exists between a service and a person's family and the person's willing preference is getting lost in it. Somebody placed in a nursing home as they're worried that there's no way to get out of this nursing home and they're very unhappy where they're living.

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Somebody who wants to move from a congregated setting to live in a community. So a congregated setting is a place where 10 or more people live in one setting, and there's an official policy about people moving out of these settings. It's at a crawl, unfortunately. It's going on a long time, and we will actually be doing a social policy piece on the slowness of decongregation. And a person contacts NAS because they're concerned that they don't have control over their own money. There's so many examples, to be honest. It's just very hard to narrow it down. So listen, this is an example of Susan. She communicates differently, but she has some words. She was referred to NAS because her parents were getting older and there was people recommended to move into a residential service.

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The fear was that Susan wasn't being consulted in all of this. Everybody else was saying this is what they felt was best. The advocate met with Susan and noticed that she was distressed about it all and asked that a move might be postponed for a while and allowed time for the advocate to spend time with her and get to know her. And basically she was able to really properly do some work with Susan around what this decision meant and what was involved. And in the end, the compromise that came around in the situation was that there was a two-month trial agreed and that would be a way for her to understand that decision and see whether she would like it or not. So the advocate met with Susan during this trial period. The observation work, that type of work I've described meant that it was clear she wanted to return home and then the advocate communicated this and she did move on, but it was agreed that there was extra supports put in to help her, I suppose, the family situation.

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And so that gave a balance to it and it just ensured that her willing preference was adhered to. This is, I suppose, a case around human rights and safeguarding. So this was John had always had access to his bank account. He always had autonomy over his choices, but then he was encouraged by his residential service to open an account where he would get his money and that then they would put in money onto a debit card from. But then the service decided to limit the amount of money he could have every week and he'd have to apply to get extra money. And it meant that everything was scrutinized and why he wanted that extra money. And it wasn't the way it was before, this change of practice. So look, there's a rhetorical question there wasn't in keeping with his human rights and it clearly wasn't.

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So I suppose sometimes these things can come from, again, best interest in this idea of not wanting something bad to happen or making sure that somebody has money for a rainy day. But to be very honest, we've seen so many people, particularly in residential services, who have died with massive amounts of money that never got spent. And you look and go, what somebody could have done with that money and the quality of life somebody could have had, which is overcaution sometimes can be very restrictive on a person. So there's a quote, I think that's fairly apt, which says what good is it making someone safe if it really makes them miserable? So I'm flying through things now, so hopefully I'm going okay. And then we do want to allocate for time there. So just we meet individuals, but we also meet people. I suppose the individuals that we meet are dealing with systemic issues.

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Some of the problems are coming from systemic issues. And I suppose it's a challenge for us as an organization then about you try and deal with the individual situation, but what happens when you've got something that's happening across the country in so many different situations? So I suppose one of the things that has come up has been around finances and it led to us doing our first proper. We've done other social policy pieces, bringing in external people and doing it in a different way, but this was, I suppose, a real ground up policy, social policy piece in the organization and was really focusing on money. So one of the things that we did was we developed my money, my rights, my options, easy to read book that's aimed at people with disabilities who want to know more about their finances. Sorry, I know the blur is on, so I can't see it very clearly.

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I think just a picture of it further on anyway. And then there was a presentation to consumer advisory group, I think it was in Central Bank, and then there was banking round table, and then we looked at our social policy, full social policy paper that was called Shortchanged. So the social policy paper looked at barriers to financial autonomy for people with disabilities. And what I suppose we find was looked at the areas of discrimination on the grounds of disability, digital exclusion, that's a big one around banking in particular, I suppose things like ATM usage or accessing say online access, people having these multifactor authentication, things that are more challenging to make it inaccessible than to use online banking. Focusing on people with disabilities as vulnerable customers rather than citizens with rights, which is a really, it's a bookbearer I suppose of NASM. We really, in our social policy piece, did try and really discourage the use of seeing people as vulnerable instead of seeing people as rights holders because it creates this paternalistic sort of oh to have to be minded rather than putting the focus on what should be done to make the service accessible and what supports that somebody may need to use the service.

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I suppose looking at the area of third party control and restriction of access to money and then financial abuse. Just to state the bishop about vulnerable customers, there's actually a new legislation that's kicking in around now that's removing the use of vulnerable customers from use in consumer codes. So there was recommendation around training for staff on the ADM, and there has been training in banks around this. There, I suppose, recommended consultation around new banking technology, regular reviews of accessibility. And again, there is an accessibility act that has now commenced around websites, so that hopefully will help, but at the time it wasn't in place.

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And then there was this whole issues around identification and the level of identification that people had in order to be able to access banking, which was very restrictive. And then there's a change, I suppose, really encouraging and some banks have taken on trying to describe, again, not use the word vulnerable customers. I suppose encouraging to build financial capacity to. We're always about capacity building for people and organizations should build awareness of people's financial rights. So would've encouraged or that the Department of Protection should engage in reviews of agent arrangements. Again, sometimes it works well and sometimes we've seen very inappropriate use of agent arrangements and very strong recommendation that the Health Regulations 2013 Act needs to be updated. These are the regulations that guide residential disability services and very clear that somebody's own money is their personal property, but the regulations aren't strong enough for HICA to fully push for better practice and for services to fully use the regulations.

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Sorry, the HEALTH Act regulations, they're what the HICA regulations are based on. So for the HICA regulations to change, the Health Act needs to be updated.

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There needs to be more safeguarding legislation that's across the board. There needs to be consistent role of designated officers around safeguarding. So again, we find different services take different approaches or not some very poor practice in some areas, brilliant practice in other areas. We know that there's huge demand on safeguarding protection teams. They need to be better resourced. Independent advocacy needs to be a priority. It's something that's been cried out for across so many different reports from other organizations and processes. So yeah, and safeguarding again. Encourage that disability services should be more proactive, that there needs to be more training initiatives and supporting autonomy. I would say generally speaking, one of the biggest issues that comes up in our work very generally, and it really crosses over into finances, is people not really knowing how to do supported decision making because it feels a bit risky at times.

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It's like, oh, if this person has their money and then they spend it all on suites or something, and will I be blamed? There's ways of doing these things to mitigate risk, but you don't have positive risk taking, but it takes a good leadership around being able to do positive risk taking and supporting autonomy.

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And again, recommended the Health Act regulations for long-term care providers should be reviewed and the services should look around person-centered support plans to be put in place for each person. So big focus by trying to get adherence to the Assisted Decision Making Act, and I'll be talking about that. And then just trying to get everybody to, I suppose, the banks not to agree to compliance with the Equal Status Act and public sector duty. Really, you're just asking for people to be for equality and not to be discriminating against people. Unfortunately, what seemed to happen when the ADM came in was, and even though the ADM says there should be a presumption of capacity, what we saw across the country was an absolute regression where all the banking king sectors started questioning capacity. And so we're seeing situations where people who had current accounts for years and might have gone into the bank to ask something to bank and had a visible disability and next thing their account's frozen and they're told they had to go and get a capacity assessment or somebody was going to have to act as a decision maker for them and the need to getting family members to go off and apply for decision making orders, really, really ridiculous stuff going on.

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And part of this, I would say things had improved a little bit, but it feels like it's going backwards again at the moment. Some banks are better than others and credit unions, but generally speaking, it's become very, very challenging area for people to have their full rights and entitlements around their own finances with the banking sector at the moment.

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Based on the report and our social policy piece and the engagement that we had at Banks, Bank of Ireland really took it on and they had done a whole suite of work that they were planning to introduce. And when they heard our feedback and they scrapped it all and just said, okay, they were totally going down all these suite of vulnerable adult accounts and all sorts of things, whereas they accepted that there should be a one door policy for everyone. Why are people treated differently when they walk in just because they've got a disability? So they gave this feedback saying that based on that, that they were then going to be working on a toolkit and looking at signposting and that are including their social policy paper and training their team members and saying that played a role to implement an entire organizational top-down shift to rights-based language terminology approach.

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So we were delighted to see that sort of change. Unfortunately, like I say, other banks haven't been as positive. So yeah, this is the other piece, my money, my rights, my options. This is the book that's designed for, it's an easy read book. It goes through everything from, it explains a lot of the terminology. It explains some of these rights like I have a right to manage and access my money at any time. I have the right to choose how and when I spend money, what I buy, where I buy it. I have the right to have my own account. I have the right to have a card to access my money. I have the right to know how much money I have. Then it goes into support options and it says I might not need any help to make money or manage or make decisions about my money.

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Or if I do need some help to manage or make decisions about money, there are options available for me to look at. I can choose who I want to help me keep my money safe. If I need help, I can choose who wants to support me. If I live in a residential setting, it's best to have this written down. It's called a financial support agreement. And it goes through to different options and it explains about options under the ADM and explains some of the terminology as well. So that's on our website if anybody wants to download it. But again, that came from, I suppose, an identified need where we were finding that a lot of the time we're having the same conversations over and over again.

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So what I'm going to do is just talk a bit about the ADM if that's okay. And like I say, it's just because it's such a big area of work that's coming up and it's such a big impact on rights and that crosses over with just, it's very broad, but cross over around finances as well. So just to give you a bit of a history around decision making in Ireland, basically up until 2023, we had the Lunacy Regulation Act was still in place from 1871, and we had very much all or nothing decision making. And it was like you turn 18, you're an adult and you have full decision making rights. And then if you needed support with decision making, you were then made a ward of court. So an example might be somebody inherited money, got a compensation claim or something like that, maybe a large amount of money, and we're genuinely going to probably need a bit of support with that arrangement to manage that money.

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And then they were made an order court in the high court. And then that stripped all decision making rights, not just around that large amount of money. It was like everything had to be decided. So depending on who the committee was and how they approached it, somebody might need have gotten permission to go on holidays to have the amount of money they might have had might have been controlled. They would need permission to have a procedure in hospital. It covered so much and it was extremely restrictive, completely not in line with the UNCRPD. So this had to go. So the Assisted Decision Making Act was worked on for a long time. Within my time of dealing with, I remember the point where it was going to be the Legal Capacity Act and there was going to be an office of the public guardian, and it was very much about substitute decision making and it was very paternalistic.

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There was a lot of pushbacks over the years, and we eventually got to the point where we're at, which is relatively progressive in comparison to other countries. We have the Assisted Decision Making Act 2015.

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It was sitting there for a long time, then eventually got over the line in 2015, but it only actually commenced in 2023 in April 2023. So we're just coming up for three years on it now. It's very focused on the premise that people should be supported to make decisions in their own lives. They should have a presumption of capacity. And I suppose, but in situations where there's an urgency, it's really necessary and the proportionality of it is somebody's going to suffer without this legal authority. And probably the easiest example to say is say if somebody like that gets a large compensation or a large inheritance, they're just not able to manage it and don't have any legal support arrangement to be able to, somebody who can legally go into the bank and manage that arrangement for them, that amount of money or make arrangements for it.

(00:41:38):

And so they wouldn't get to benefit from it without this legal arrangement. That's the type of situation that it now gives a very decision specific. So if somebody needed that support, whereas before it would've been made award of court, everything taken away from them. Now we have the assisted decision making that allows for that to be very narrow and say this person can have support, somebody to make decisions for them around that amount of money. That's the idea of it anyway. It gives three levels of decision making. So the most basic level, which I really haven't seen being used is a decision making assistant, which is where if somebody gives me the information about what the decision is, talks me through it, explains it to me, and then I say, "Okay, now I understand it. I can make my own decision and I make my own decision." And then you've got somebody who is that person who helps you with that decision, giving you that information.

(00:42:36):

The next level up is a co-decision making agreement, and that's where somebody shares decision making responsibility. So if I am the person and I feel I want to be in control of my own money, but I do feel like I need somebody to help me out a bit with it, but just to help me with it, not to take over, but they can help make the decision and share that decision with me if I want them to and who I choose. And we make up an arrangement and an agreement where it's clear, "This is what you're going to help me with and these are the limits on it." And then that decision making agreement gets registered with an organization called the Decision Support Service. They sit in under the mental health commission and they hold that agreement. So if I'm unhappy, if I've asked you to be my co-decision maker, but then you go off and do your own thing and take over and stop letting me make decisions, whatever, if I'm not happy with it, I can actually go and make a complaint then say, "I actually don't want this anymore.

(00:43:41):

I want to change it. The person isn't doing the agreement we had and I can scrap it, but I'm still in control of it." The next level up, and this is where you get into substitute decision making, and that's where word court was totally substitute decision making. And where anybody makes a decision for another person, that's substitute decision making. So the highest level is what's called a decision making representative order, and that's called DMRO for short. And then that's an application to the circuit court and there's an application that somebody would be appointed as a decision making representative. Again, it's meant to be on specific decisions and that would be, I suppose, reviewed every three years. It's registered with a decision support service. The decision maker has to make a report every year on what they're doing as a decision maker, and there's accountability and I suppose some oversight.

(00:44:47):

So it's been a big change from the way things were to the way things are now. I would say we're in early days, and again, around it's come up to three years, but it's still huge learning ongoing. Every day is a different scenario in terms of what's coming up around the ADM and different practices and trying to get some understanding nationally with judges, with sisters, with everybody around what's going, because a lot of people find happening is that people shortcut to the decision-making supports and they skip the principles. So we're getting a lot of situations where people or family members are applying for orders for things that don't need decision-making orders, but a lot of people are doing it because they feel it's what they're meant to do, because the law is there, because they should do it, that it's maybe a more transparent way of doing things.

(00:45:47):

Whereas if somebody was managing away fine with day-to-day decision-making and it was going along fine, why does there need to be a court order? And there's a lot of families that are being encouraged towards this. It can cost eight to 10,000 for a family member to apply for an order. And there's a lot of misinformation about the need for these orders. And we're coming across these situations going, well, why is somebody's right to make these decisions or to have supported decision-making being taken away out of these orders that are done? Because it costs so much that you see them, you might have a need for maybe even potentially the need for one small area of decision making, but then go for while we're here and it costs so much and we're in the system and so hard to get this done. We'll ask for all these, well, what if in the future, what if this happens, what if that happens?

(00:46:43):

What if somebody needs to operate? And next thing you're ending up with all of these orders that may as well be more to court in terms of how much is included in the order. So we're pushing back a lot on this. It's a big issue that's coming up and we just are concerned, I suppose, at the level of restriction it puts on somebody without realizing how much, without necessarily being the intention. But people are, like say, skipping by the principles, which are, it should only be used if there's an urgency, if it's something that really has to happen, if it's a very current, if it's a decision that's actively happening, not something what if happens down the line, because we all live with what ifs. What if I got knocked down in the morning? What if all of these different situations that we would not expect somebody to go out and get a court order for us.

(00:47:35):

For me, I wouldn't expect somebody to do that, but yet it seems to happen that there's this idea that you have to get it for a person with a disability. So look, that's it. Again, I've talked through a lot of that there. The act also does cover advanced healthcare directives. So that's one that before there was this idea, I suppose, a living will that somebody could express wishes around if they didn't want resuscitation, for example, and that would be respected but wasn't legally binding and it wasn't ideal. Whereas now you have advanced healthcare directives that are legally binding and you can instruct all the care you don't want. You can't direct care, as in you can't say, I have to have treatment that maybe isn't medically indicated. So it is a positive move that you can instruct your care and there's also a designated healthcare representative option within that.

(00:48:51):

So if somebody knows, for example, that they're going to lose capacity in the future to make decisions, so you're thinking about something like maybe dementia or something like that, somebody could put an advanced healthcare directive in to say at the point I'm no longer able to make decisions, this is the person I want to engage with my healthcare representatives and help make healthcare decisions for me and that will be legally binding. Enduring powers of attorney, again, that's an idea as well about the future, about that if I'm not able to make decisions in the future, this is somebody that I would like to make decisions for me around specific areas to maybe manage my financial affairs and to arrange to pay my debts or whatever it is. So there are arrangements that you can do as a future planning tool.

(00:49:41):

So generally speaking, underneath all of these, like I've referred to, I suppose capacity, it's based on capacity. And this can be the decision, one of the principles of the ADM that's very important is the principle of unwise decisions. And so that's the difference again around best interest, will and preference. And it's like, look, I always say in terms of finances, for example, I've left my bank card in a bank machine before and I was allowed to keep my bank card. Nobody took my bank card off me. I've made unwise spending decisions and my money hasn't been taken off me. Nobody's come in and said, "You are no longer allowed to manage your money." If you have a disability, often people are so under the spotlight and there's a mistake is made and it's like, "Okay, that was an unwise decision, so you clearly can't manage your money.

(00:50:42):

We're going to manage it for you." There can be a lot of that out there. So this is the difference though between sometimes does somebody understand and have the capacity to make a decision, but they're choosing to make an unwise decision versus does somebody genuinely not understand or have insight into that decision and they're putting themselves in risk or in harm or going to be to their detriment to a point that you can't stand by and you have to intervene and say, "This person doesn't genuinely understand how risky this decision is." So the move has also included functional capacity assessments. So that's changing from broad sweeping assessments. You go into the doctor and it's like, how do you. I'll give you a word you have to remember in 10 minutes time and who's the president of Ireland and what time does it say clock and what month is it?

(00:51:41):

And at the end of the day, what's that got to do with how you want to spend your money if you have disability allowance, what way you want to spend your disability allowance? So it's trying to make it more relevant to saying, so it's decision and time specific. So for example, if it was disability allowance and it's about a person's ability to spend their own social welfare payment, it's around, okay, at this point, this disability allowance, for example, can the person understand the information relevant to the decision? So does the person understand the money they're getting and what it's for, where it comes from, what's needed for? Can they retain the information long enough to make a choice? Can they weigh up the information to inform the choice they might want to make, and can they communicate their choice? And this doesn't need to be verbal either.

(00:52:31):

People can use other types of communication, including assistive technology. So that's now come in as a standard assessment and moving away from medical assessments. And under the act, these assessments can also be done by professionals like social workers and OT and health professionals, allied health professionals who are registered with say CRU. So it's moving away from it having to be GPs and psychiatrists doing these assessments. So for ourselves, like I say, we always focus on the will and preference of the person. These are the decision formal arrangements that are available to the person. And I've mentioned already the four approaches that we would use to try and gather information around a person's will and preference to represent that. We are getting a lot of.

(00:53:23):

It's standard now at this point if a decision making order is in the court. Judges are now asking advocates to provide the call it court reports. We don't do reports, but we will support a person's will and preference to be represented to the judge. That's around whether they want a decision making order, whether they're okay with what the decisions are that's included in that order, and whether they're okay with the person who's proposed as the decision maker. So there's a lot of views that a person might have, and we will try and bridge that gap to make sure that the judge knows what the person's views might be on it, especially if they're somebody who might not go into court themselves and say what they want.

(00:54:06):

So look, we've got loads of issues that come up, unfortunately, where it can be everything from, say, inappropriate capacity assessments, trying to get away from these blanket medical model ones, like should this person has no capacity at all sort of a thing and trying to get back towards functional capacity where there isn't proportionality. It's like I say, it's driving the types of orders there where you start with one thing and you ends up being applied for everything where it's trying to avoid where somebody's right to an unwise decision isn't being respected, where there is, I suppose, concerns around the person who wants to be the decision maker. Unfortunately, we have some scenarios like that where it isn't necessarily wouldn't be a good thing for this person to become the decision maker in a situation.

(00:55:06):

Sometimes, I suppose one thing is you can't make complaints to the decision support service, so there are things that sometimes advocates will support with. So we are really trying to support a person to be involved in the process, to be aware of their rights, to make sure the will and preference is known. We do a lot of work trying to bring focus on the ADM, like the principles, trying to slow down this decision making. Sometimes it's situations where it's like there's difficulties on all sides and people are like, "Well, I'll just get a decision making order to try and take control." And at the end of the day, you often see situations where the person actually is not able to make decisions. The issue is that other people don't agree with what that decision is and might have conflicting views on it, which undermines the person's right to make their own decisions then.

(00:55:58):

So whereas advocates coming in and sort of going, "This person has the right to make their own decisions. Here's the principles of the ADM. What's this all about?" And really try and bring back folks to the person. Making sure the person has legal support with the person, with the process. So under the act, any person who is what's called a relevant person, they have a right to a solicitor. If there's an application in for an order for them, they have a right to have legal representation in that process regardless of their ability to instruct the solicitor. Sometimes we tend to court with the person and we support the person to engage with their decision makers if there are decision makers appointed them. We're just seeing very poor practice in a lot of areas, like say just around understanding of why an order is needed and the fact that it probably isn't needed.

(00:56:51):

Often it's around avoiding supporting decision making, which isn't great. Sometimes people are so focused on getting a signature, and we've definitely had a strong culture and practice of next of kin decision making, which was never legal, but was always used and getting family members for adults to sign consent forms that had no legal basis at all and should never have been asked for and were always contradictory to the HSE consent policy. But just everybody seems to feel better if they think there's a signature there and rather than going through the longer maybe process of supporting decision making and genuinely doing the work to help and build somebody's capacity to make their own decisions and building in a little bit of, it might feel a little bit riskier, but it's very respectful or more respectful of the person's rights. Like I say, judgements around capacity, still just this culture change that's needed around really seeing somebody as a decision maker and having full personhood.

(00:58:00):

We have a lot of issues, like I say, about the court directing us to produce reports at short notice when we're really overstretched. It's positive that they want to have the voice of the person in the court. It's brilliant. Just nobody taught to give any extra resources to advocates to do that. We find there's a lot of different expertise. A lot of time we're having to actually explain the orders to solicitors or explain the act. We just had another case today where an advocate had spent probably an hour trying to explain the act to barristers who were going in looking for a really overarching order and they came away and they completely scrapped loads of the order that they were looking for because they realized it was complete misuse of the act, but this is an ongoing process.

(00:58:52):

So look, there's, like I say, just a general, this idea of capacity for a person's ability to make decisions, just genuinely not believing in it is last thing. And I've mentioned already the cost of things. We've seen situations, a couple of situations now where a person has apparently put in an application for themselves, which was clearly they were gotten to sign a self-application because if a relevant person gets legal aid, the applicant doesn't and it can be very costly. So we're seeing people being put under pressure getting to sign forms that they are applying. Anyway, it's a whole other story around the issues that are coming around the costs of these orders. So look, I won't go through all the cases studies here because I'm conscious of the time, but I will just say that the Decision Support Service has information on the Assisted Decision Making Act and the arrangements.

(00:59:55):

The HSE Office for Human Rights and Equality had a great page with loads of. Information, loads of links. Unfortunately, the HSE website is in Smithereens at the moment. They've taken it apart.

(01:00:10):

I'm not 100% sure if it's due to the whole restructuring with the new RHAs, the regional health authorities, but the whole page that had been there around the Assisted Decision Making Act is gone. There were webinars on it and there was a lot of information. It's one to keep an eye on. I can't even give you the link because it's gone. It's completely broken, but maybe in time it will hopefully get back up there. But it had a lot of information on it. Generally speaking around financial supports for people or just social welfare entitlements, sorry, I meant to say things like disability allowance and secondary benefits and things like that. We don't necessarily deal with that in NAS because it's something that's dealt with by Citizens Information on a daily basis and they're very expert on all the entitlements. Things change so much around, for example, how many hours you can work if you're getting disability allowance and things like that.

(01:01:09):

And we might have some idea on it, but to be very honest, we specialize in other things really. So Citizens Information, we'd always encourage people to go to Citizens Information. If there's some issue that somebody really can't access Citizens Information for some reason, we can look at potentially supporting somebody with a social welfare issue, but we'd always try and encourage the CIS route first. And I'd say, I think just at the most basic level, because it's their bread and butter to do day in day out, whereas we don't. MABS then, they can help people with, I suppose, budgeting arrangements, setting up payment arrangements for example, or have good advice on how to manage bills. So they're also, I suppose, a good one to link in with if somebody is struggling with managing finances. So look, that's I suppose a whistle stop tour through a lot of things there and I'm not sure if it feels as relevant as you were hoping to, but if there's obviously questions or I suppose anything else that you wanted to ask me, I'm happy to stay on and sorry, I'll just close off that.

Nicola Welford (01:02:31):

Thanks

Mary Carroll (01:02:31):

For that, Mary.

Nicola Welford (01:02:34):

It's actually even surprising to see the amount of work that the organization does do, and I'm not sure if everybody here realized that, maybe you all did already, but it's fantastic to see. Has anybody got any specific questions, guys? Was there something that you came on here for particularly that you were hoping maybe to find out about that you haven't found out about or that you'd like to know more about based on what Mary has covered? And if you don't want to ask, let's say on camera, you can put it into the chat there as well and we can address the questions through that if you're happy to do it that way. We'll give them a few minutes. I have a question for you, Mary, if that's all right. Okay,

Mary Carroll (01:03:14):

Of

Nicola Welford (01:03:15):

Course. Have you ever, I suppose it's not financial related, but it is to do advocacy and it is to do with rights in my opinion. Has MAS ever looked at the voting system in Ireland and accessible voting? So I suppose the right to vote and secrecy as well.

Mary Carroll (01:03:31):

Yeah, we haven't tackled it as a social policy issue. We are aware that it has come up for people, for example, somebody who is blind for their ability to be able to vote independently in private. And then there's often obviously the physical accessibility. We have staff members who have accessibility requirements themselves and will be very familiar at a personal level as well as a systemic level about the issue. But it's something that I know, I think it's Disability Federation of Ireland will usually do a piece around the time of election around accessibility.

Nicola Welford (01:04:20):

Yeah, they do. They have a booklet on it, don't they?

Mary Carroll (01:04:22):

Yes. Yeah. So I know that what we find, and it's interesting I suppose in terms of, I meet with a lot of groups where they might have an advocacy group and a service, for example. And when I say, "What do you know about rights?" And people will say, "Well, we have a right to vote." And it's something that is becoming more, I suppose, understood that everybody has the right to vote, but the next step is around making it very accessible for everybody to be able to vote. And then there's the bit about, I suppose, groups knowing how to lobby and lobby their politicians around issues that are relevant to the group. And I think that's the real value of group advocacy in that situation. But your concern or your question, would you be thinking from a physical accessibility side of things? Yeah.

Nicola Welford (01:05:18):

And I suppose our community in particular, because the physical disability, one of the main things that we're navigating, but yeah, it's just the physical access to the booths is one thing. And then the actual access to putting that X on the paper is the other thing. And then to be able to do it in privacy, everyone else can vote in secret.

Mary Carroll (01:05:40):

Exactly.

Nicola Welford (01:05:41):

So even if you did have somebody to assist you with all of that, it might not be in secret.

Mary Carroll (01:05:46):

It's

Nicola Welford (01:05:46):

Just one of my own pet hates that I

Mary Carroll (01:05:49):

Have. I know, no, no, no. Like I say, we would be aware of it, but like I say, I know that it is advocated on a bit more by probably DFI. And I think it's one of the things where we're still trying to. I suppose when you look at the history of an organization, it's interesting. I mean, we're up and running since 2011, but so much of our time, when you're getting an organization up and running and trying to establish your vision statement and really your purpose and getting your name out there and getting a place at the national table on important matters and all of these things. And it's really only in the last few years that we're really able to get to the point of saying, how do we do the systemic stuff as well as

Nicola Welford (01:06:40):

Representative?

Mary Carroll (01:06:41):

Again, because it's like, where's all your energy going at a given time? And I don't know, hopefully in time we're actively trying to see how can we highlight issues on a more ongoing basis at a systemic level. It's something that. So I would say we haven't flagged it as a systemic issue. And sometimes what we do is we'll have a case book every year and we'll try and bring up issues that we find are coming across. Sometimes that gets a little bit of traction, sometimes it doesn't, but we are trying to bring up things that way. I'm not sure if it's come up in any of our case books yet, but it's an interesting one to hear from you as well.

Nicola Welford (01:07:16):

Something

Mary Carroll (01:07:20):

That our community could look at. Oh, absolutely. And linking in with say the likes of the ILMI, the independent living movement as well. And I think probably it's the sort of thing that would benefit from alliance across DPOs to really speak very loudly on that because I think there's lots of people are individually doing it, but I think it needs to be a cross sector one. Yeah. Yeah.

Nicola Welford (01:07:47):

Okay, Mary, we have a question here. Is the booklet, my money, my rights, my options suitable for a young person getting disability allowance at age 16? Are they signposted to it when it is granted?

Mary Carroll (01:08:00):

So they're not signposted, but I suppose it's one of those where we are trying to encourage awareness. There is the 16 to 18 age gap is an interesting one so that people get disability allowance at 16, but wouldn't necessarily have the legal rights as an adult until 18. So it's always a slightly different area. But the booklet is there is relevant around the idea, I think, of building this idea that your money is your own property and being able to, this idea of having support if it's needed, but what good support looks like and having, I suppose, but an idea of autonomy and building that idea of autonomy. And I think it would be a good thing to use as a transition into adulthood. So like I say, our service is geared at over 18, so we did design it for over 18, the booklet.

(01:09:06):

We didn't get into that 16 to 18 or if you're under 16, but I do think there'll be things that are relevant in it and it would be great if it was routinely signposted to people getting disability allowance. But I think that's something that I'm not sure that the departments are great at signposting people towards rights generally.

(01:09:35):

That's not an official last comment. There isn't necessarily always a sense of here, make sure you absolutely know your rights. But Citizens Information website is always a good one as well for generally for information on entitlements. I know I mentioned that already, but they'd be probably more likely to push for people towards Citizens Information website. But yeah, if you want to help get the word out there about the booklet, we'd be delighted.

Nicola Welford (01:10:08):

We'll put it on our list. Thanks. Hannah, you have your hand up there. You got a question for us?

Webinar Participant (01:10:15):

I don't have a question really, but I was just going to say that in my local voting station in Port McGee, it is accessible. There's a wheelchair table that, but like Nicola was saying, I wouldn't be able to sign properly, say my mom would have to help me sign. So say if I need to sign a form, if I'm out and about anywhere, I have this thing that has my signature, how they'll solve it. But on the ballot paper, you need to do the mark, and so my mom would have to do that for me on my behalf.

Mary Carroll (01:10:59):

Yeah, no, and it's really interesting to hear that. And like I said, I would think every venue nearly at this stage is probably accessible technically in terms of you can get in, but like I say, it's the next level about how is it. Yeah, I think that's really interesting.

Nicola Welford (01:11:21):

In my own case with my daughter, she's 11 now, so she's obviously not voting yet, but I'm thinking ahead for her and she's nonverbal and her disability affects her hands, so she wouldn't be able to hold a pencil to do the ex for vote, but she uses an eye gaze computer and she uses other types of. So I suppose I'm thinking more about the system of voting that's not just that pencil and that piece of paper systems are taking place for people with disabilities.

Mary Carroll (01:11:48):

Yeah, no, I think it's something that really needs to be probably pushed a lot more. And I'm just thinking, so Hannah, I'm thinking down Carrie, I know the independent living movement group, they also have a program called Voice Group and they would look at, I think it's Kirk Kerry area, Nicola Mickle runs it. I think it'd be great if you were collaborating with them on these sorts of issues that were coming from the ground up.

Webinar Participant (01:12:13):

Yeah, I'll just say about that, that there is one in Kirk. They did try and get one set up in Kerry, but I don't think there was enough interest. But what I also found interesting that was brought up is that you said most of the calls that you get tend to be from people with intellectual disabilities. Is that what you said?

Mary Carroll (01:12:44):

No, no. Well, I was probably saying a lot of things, Hannah, so trying to filter through, I'd say was probably hard because I was speaking very fast as well. I was saying that we do have a lot of calls, and I wouldn't say it's a majority, but a worrying amount of calls, I would say, from family members who have children with disabilities and they're trying to get supports for their children. And because we are a service for adults and we know that it can leave family members feeling very isolated about who helps when you're struggling to get supports for your child, that's a hard one.

Webinar Participant (01:13:30):

I was just talking about that's like, do you know when you went through the different types of disabilities?

Mary Carroll (01:13:37):

Yes. Oh yeah, that digress. And yeah, so the largest amount of our area of workforce is intellectual disability.

Webinar Participant (01:13:47):

Yeah, and I find that interesting. Do you know why that is over

Mary Carroll (01:13:56):

Other - Because I think, so a lot of people with intellectual disabilities live in services or go to day services. And also I think you've used the word capacity a good bit when I was talking and capacity, like say somebody's ability to, I suppose, the ability to understand and make decisions, and there can be a lot of judgment around that and a lot of presumptions, particularly for people with intellectual disability. There's traditionally been a very, I suppose maybe what would've been traditionally a charity model for people with disabilities,

Webinar Participant (01:14:40):

Which is - It's now going towards more like a social model where the emphasis isn't placed on the person or their disability, but more the societal barriers.

Mary Carroll (01:14:52):

Exactly. And I suppose there's a movement even beyond the social model to make it very rights-based, and that it's just based on a person's rights are fundamental and they just can't lose them. So I suppose the charity model though would've been a bit of the poor thing, sure don't they need to be minded type of an approach that a lot of people will have grown up with. And a lot of services, a lot of disability services came from very, very, very well-intentioned and huge amounts of fundraising from family members and from communities and very much by trying to offer care and support, but they would've traditionally maybe been seen as a person who needed care and support and being this vulnerable person who wouldn't be able to take care of themselves or make decisions. And so this is the culture shift that's needed, and that's why a lot of our work is in the intellectual disability area is because you're

Nicola Welford (01:15:53):

Trying

Mary Carroll (01:15:53):

To shift to saying, no, this is actually an adult person who might need support with making decisions and with doing all these things, but they're actually a rights holder and we need to stop seeing them as somebody who can't make decisions and look at the strengths and the abilities and the ways people do communicate what they want and being more creative about how we see people.

Webinar Participant (01:16:20):

Obviously some people with intellectual disabilities would find it more difficult to make decisions, but it really depends on what the disability is. Some people with intellectual disabilities, they go out and they have great jobs and stuff. Absolutely. It's just not to overlook it and stuff.

Mary Carroll (01:16:44):

Absolutely. And I think there's a model, it's called circle of support style decision making, where if somebody isn't able to make decisions for themselves, it can be somebody is supported with those decisions by all those that are important, like family members and services and everything, but where they look at the will and preference piece.

(01:17:02):

So I'm thinking of one situation where those family members very concerned, there was changing needs for their sibling who had an intellectual disability and those decisions needed to be made and it was all about next of kin, which doesn't exist. It's an inheritance term, but it was being used and so there was sort of a presumption that this next of kin could make the decision, but the other siblings didn't agree and it was all sorts of contention going on in the family about what was right. And then you just went into the situation and said, look, none of you get to make the decision, but all of you together can support her with her decision and really think about and sit down together and look at what do you think she would want, what would her will and preference be in the situation? What does she tell you directly and what did she tell you indirectly?

(01:17:54):

What do you know about. And once they're able to step back from this and really step back from what they though was best interest and focus on do a circle of support style decision making around a person's will and preference, they were actually all able to come to a very clear consensus because you were able to actually do know what she would want and they were all unified then when they knew that. And so she herself wasn't really able to fully make that decision because of the way things were for her at that point, but they were able to then use what they knew about what she would want and try and support her decision around that. So that's I think the difference.

Webinar Participant (01:18:31):

Yeah, and that does make sense why people with intellectual disability would be the biggest category because some of them might need more help with actually making the decision, whereas people with physical disability, they might be able to make the decision, but as Nicola said, it's like some people with physical disabilities can't communicate, but they might have the answer ready and rearing to go in their head. It's just to get it done properly.

Mary Carroll (01:19:05):

Exactly. And that's the one thing about the Assisted Decision Making Act is it does stress that it's important that a person supported to communicate and that puts the onus. So instead of it's changing it from the person having to prove they have the ability to make decisions to what have I done to support this person to make decisions? How did I look at the communication piece? Did I do easy to read social stories? Did I look at the assistive technology? And because communication is such a huge area, we had a very profound situation where there was an advocate was asked to come in and meet with a person around a decision. And we always as a first question will ask has the person been reviewed by an SLT? If we're hearing about communication differences, what's been done and the person have been? And everybody was saying, no, this person can't make decisions.

(01:20:03):

There's no hope they can make decisions. But when we pushed for the SLT to become involved, it turned out the person was able to use apps on an iPad and turned out they're actually extremely well able to communicate and they had so much ability. They moved out of this residential service into independent living once they had the tool to communicate. So the communication piece is so overlooked sometimes and it's really, really important and so good that it's in the act. So like what you're saying, Hannah, if somebody might know exactly what they want is how to get that communication piece across though. And

Nicola Welford (01:20:42):

That's where

Mary Carroll (01:20:43):

Sometimes the advocacy piece can be about coming in and focusing and saying, "How are you listening to this person? How are you supporting them? What's the person's communication style?" And respecting that then. Yeah,

Webinar Participant (01:20:54):

Because it can be very frustrating for a person that maybe might have their answer but just might not be able to get it out.

Mary Carroll (01:21:03):

Exactly.

Webinar Participant (01:21:05):

It almost probably feels like they're being locked by their body.

Mary Carroll (01:21:10):

Yeah.

(01:21:11):

No, and again, we had another example recently of somebody who was locked in, I suppose, after acquiring a disability and they had very, very blinking communication. And the advocate came in and just was able to ask a question very generally that. So everybody had come in and been just doing yes or no questions with this person, and the advocate came in and really tried to open up more open conversation. And it turned out the person, their question was, "What happened to me?" And it turned out they didn't know how did end up with a disability. They'd acquired it through medical incident, and it's like they woke up with a disability and they were locked in. Presumably people had told them, but maybe the way it was told at the time, they didn't recall. And they have been dealing with this for a couple of years at this stage of not knowing what was going on.

(01:22:11):

And everybody was so shocked and it took a long time, but they were able to come in and give the medical feedback and give a lot of support. But again, it's that openness to asking questions and really understanding what's going on for the person. So yeah, I'm just conscious of the time and I know there's another question there.

Nicola Welford (01:22:31):

We have another question here and there. Another hand up.

Mary Carroll (01:22:39):

Sorry, you're on mute.

Webinar Participant (01:22:44):

Is there an advice sheet regarding the procedure of opening a bank account for an 18-year-old or a 16-year-old? I know you have the booklet, but

Mary Carroll (01:22:55):

Just

Webinar Participant (01:22:55):

The whole procedure.

Mary Carroll (01:22:57):

Yeah, I can't honestly say that I know of it. I think it's the individual bank would be guiding you

Nicola Welford (01:23:05):

Towards it. Inclusion Ireland, Mary, they're great to have resources. Yeah.

Webinar Participant (01:23:10):

Sorry, I missed that.

Nicola Welford (01:23:12):

Inclusion Ireland, maybe on their website, they would have a lot of documents and resources for their community. Now they would work with intellectual disabilities, but they would be great to come up with resources and packs like that.

Webinar Participant (01:23:25):

Lovely. Thanks a bit. They might

Nicola Welford (01:23:26):

Have now. I don't know for sure.

Mary Carroll (01:23:28):

Yeah,

(01:23:29):

They might. And then also the banks, again, some of them are changing their titles, but some of them have what's called a vulnerable customer unit. So they're not at a branch level, it's at a national level, and they deal with situations. Now again, some of them are more progressive than others, so depending on the bank in terms of encouraging, sometimes they might need to do the intervention with a local branch around what's needed and encouraging not to be. So questioning of the person and to be able to support the process of opening an account. So I'd say if you're hitting a wall at a branch level, you can ask to speak to the vulnerable customer unit for that branch or for

Nicola Welford (01:24:13):

That branch. Another option would be your local ETB. So in your ETB, you'd have an adult literacy officer and they would often do financial tech courses or financial literacy programs where they would teach adults how to access finances or again, forms and going to the bank. So your local ETB might have a support person there.

Webinar Participant (01:24:36):

Lovely. Thanks very much.

Mary Carroll (01:24:38):

That's no problem. Sorry, I wasn't butcher for that one.

Webinar Participant (01:24:41):

No, absolutely. I've got direction. Thank you.

Nicola Welford (01:24:45):

Any other questions there, guys? We've covered a lot there, Mayor. You covered a lot. It's a minefield, isn't it? There's so much to it.

Mary Carroll (01:24:58):

Yeah. Yeah. No, look, I suppose I think it's positive that there is more focus on the area of rights, and I think it's just to

(01:25:06):

Keep that conversation going. And look, what I'd always say is that there'll always be concerns and challenges and whatever, it's trying to keep dialogue going and dialogue open. But if you can start from the basis of what somebody's rights and how do we support this in a positive way, that's always a good basis to then, if there's difficulties, whatever, it's how do you support somebody's rights and also give the support? It focuses on what does good support look like in that situation then? And like I say, the whole area of the ADM has really opened up so much discussion around a lot of things, and some of it's going in a lot of different directions. So I suppose to encourage a positive interpretation of it to take the messaging around supported decision making and the importance of that rather than putting in substitute decision making as the solution to doing it.

(01:26:11):

And obviously, look, if an order is needed, it's not to be completely against the use of a decision-making order. There are times when it is absolutely needed and will make a big difference in a person's life, but it's just to not go to it as the default.

Nicola Welford (01:26:28):

Okay. That's great, Mary. So guys, thank you very much, Mary, for your time and thank you for advocacy service. We really appreciate it. And we'll be sharing the slides from this as well. Guys will send it out in an email so you'll be able to look back over all the main points. And thank you very much for your time this evening. We really appreciate it. Most

Mary Carroll (01:26:45):

Welcome. Lovely to meet you all.

Nicola Welford (01:26:47):

Okay. Take care.

Mary Carroll (01:26:48):

Take care. Bye now. Bye-bye.