Summary
This episode of CareLab explores how AI is reshaping independence for seniors and people with disabilities. Guest expert David Banes discusses the benefits and challenges of AI in caregiving, such as smart home technologies, document summarization, accessibility tools, and AI companions. The conversation highlights the balance between opportunities and risks, the importance of inclusive data, and how caregivers and families can advocate for safe, effective, and equitable AI solutions.
Key Questions Answered
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What is the Equitable AI Alliance, and what does it do?
It’s an initiative under the Zero Project that educates families and professionals about AI, highlights opportunities and risks, and shares best practices for equitable use of AI in disability and caregiving contexts. -
How can AI help caregivers with overwhelming paperwork?
AI tools like ChatGPT can summarize complex reports and documents, making it easier to identify critical information without spending excessive time reading. -
What role does AI play in supporting daily independence at home?
Smart home technologies integrated with AI allow people to control lights, curtains, or temperature, and even anticipate routines—helping both individuals with disabilities and their families save time and reduce stress. -
What AI tools are particularly useful for people with disabilities?
Apps like Seeing AI, Be My Eyes, and Aira use AI to describe objects, read text, recognize people, and guide navigation—supporting those with vision loss, dementia, or learning disabilities. -
What are some risks of relying too heavily on AI in caregiving?
AI may reinforce biases, provide incorrect advice, or replace human interaction. It’s important to critically evaluate AI outputs, ensure inclusive data, and use AI to facilitate—not replace—human connections.
Transcript
Emilia Bourland
What if technology could give back the one thing that caregivers and families never seem to have enough of? Time. In this episode, we explore how AI is reshaping independence for seniors and people with disabilities. From smart tools that make daily living easier to innovations that lighten the load on caregivers, we'll uncover how artificial intelligence is changing what it means to live and care with dignity and freedom.
Brandy Archie
And we're gonna do that today with David Baines. He's the chair of the Equitable AI Alliance and General Secretary of DATE Europe and the European Assistive Technology Industry Association with a career in leading innovation and accessibility and assistive technology services in Europe and the Middle East.
as well as supporting the development of emerging technologies and innovations. He works globally to support the implementation of AI in a system and accessible technologies from policy into practice, including AI for communication, mobility, education in the workplace, all things we've been talking about on CareLab in order to highlight how to unlock the potential and also mitigate the risks in the development and implementation of AI. David, thank you so much for joining us today.
David Banes
It's good to be with you!
Emilia Bourland
Yeah, thank you so much for being here. I think the first question is probably on everyone's mind is how did you come to be in this position, this role?
David Banes
I have to go back a long time to start us off. I have a brother with cerebral palsy. So I start from there. So I grew up with a younger brother. He's now 60, I'm 63. So I spent my entire life watching my family, my parents and Paul and how technology and support has changed over many years. As we get older,
My father is now nearly 90. And I now find myself in a situation where many of the things that he took responsibility for, for my brother, are things that he's now passing on to me. So it's one of those slightly weird things where many of the things that I spoke about for other people for many years, including getting old, are now my life and including some degree of providing some support and help.
my brother.
Brandy Archie
So how did finding I mean you could have just been like I'm on a mission to find help for my brother and just kept it at that but you didn't do that you're also doing things that are sharing it with others so tell us how you got to that point
David Banes
Well, I think there's a little secret here, which is for many, many years, the things that I've recommended for other people in terms of their right to make choices, their decisions and so on. When it's your brother, you feel a little bit differently about it. So when my brother decided that he didn't want to use walking support anymore, he just wanted to use a wheelchair, I found that really difficult. So many of the things that I've done.
I've applied to many other people that I've worked with all over the world, but I'm very conscious of that emotional link, that personal link you have with a person, where you may have seen people invest many, many years in trying to deal with a problem, a challenge, an impairment. You may have very different feelings about it to what theoretically we believe underneath for other people.
Emilia Bourland
That's such an interesting point. And I think that we can, we all have examples in our own lives of when that happens. know, know, Brandy and I are both occupational therapists, but it's really different being an occupational therapist, going into a clinic or into someone's home and working with them professionally. It's a, when it's your own family, all of that really goes out the door, right?
David Banes
You are so invested. You are so invested in what you want to see happen. It is not a one-sided relationship. There is a part of you in that as well as your son, your brother, whoever with a disability. to come back to it, yes, I have made many recommendations from my brother and advice, some of which he's taken, some of which he hasn't over many years.
Brandy Archie
including our expertise.
Emilia Bourland
Including our expertise, yes.
David Banes
Obviously over time I was involved in a much wider range of disabilities and a far wider range of care situations. Some people were people providing remote care, some people were in people's homes where you maybe have got support services coming in or not. And I've realized that all of those are variables and understanding the context and the setting is a huge part of what advice you can give and finding solutions that work for the family.
the person with the disability.
Brandy Archie
So can you tell us a little bit about what the Equitable AI Alliance and the different organizations you're a part of now, what they do that ends up helping people?
David Banes
So we do two things. The Equitable AI Alliance was set up as an initiative of what's called the Zero Project. The Zero Project is an initiative of the ESSOL Foundation, which looks to move forward an agenda on zero barriers across the world. A couple of years ago, we did a little bit of work around recognizing that AI was going to have a huge impact in our sector.
We produced a thing which was called a basics document, trying to explain to people, parents, families, professionals, what AI was, how it worked, and why it was important. And we then got supported by an organization called the Seneca Trust to try and take this forward a little bit further. So what we try to do now is to seek balance in terms of where we stand on AI. There are such huge opportunities.
that AI offers to us. So many things that it can make easier and enable people to do things that previously have been very difficult. But we also know that that comes with certain risks, certain challenges, both to the person with a disability, their family, and actually to some extent to professionals as roles change and so on. So the Equitable AI Alliance tries to offer some insight into both of those.
highlighting best practices, but also suggesting some of the challenges and some of the mitigations to deal with.
Emilia Bourland
like how you're approaching this from that perspective of like cost and benefits and trying to find the balance in there, because I think you're right. This is really interesting. Actually, Brandy and I just did an episode where we discussed the use of AI for like some, particular things in, caring for older adults. And balance is one of those things that we were kind of trying to find in that conversation. I'm wondering, what are.
If you could kind of like highlight some of the benefits and then some of the risks a little bit more specifically for people as you are going out and, know, the same way that you would educate people, you know, regularly. Yeah.
David Banes
So I would start for the family members, strangely enough, on technologies that can help them. So having just got into a situation where I'm trying to understand all the documents, all the reports, all the benefits payments and the structure that's been handed over by my father, I find myself in this reading and thinking, actually, you know what, I do not know what is important in this document and what is not.
So one of the things I did very early on as I started to get them, as I scanned them and I put them into ChatGPT. And I asked it to produce me a 500 word summary initially of each document. Now that didn't tell me everything I needed to know, but it probably gave me between 80 to 90 % of the really critical information. Who was responsible for what, what I needed to do and what costs.
Emilia Bourland
and
David Banes
there were to that and so on. I think one of the biggest challenges for family members, and I would start off with, is
It's like navigating a maze. But it's a maze where people keep moving the hedges and the walls whilst you're walking through it. It's like a terrible, terrible horror movie sometimes. And no matter where you go, you always seem to hit a wall. And I think that AI helps us to provide a map to navigate that maze, to highlight what do we actually need to know? Yes, then we can delve a little bit deeper.
Brandy Archie
Mm-hmm.
David Banes
then we can ask it to give us more information or we can just read the document again, knowing what's important to start off with. But I think that also highlights the flip side and we're gonna constantly come back to that, which is.
You still need to look at the advice you're getting from the AI with a critical eye. Don't assume that it's got everything right. Maybe if you've got an AI summary, then maybe you phone somebody who's providing care or if I'm saying, I want to check that I've understood this correctly and take them through it. And if they say, no, no, that's not right, then you can correct it. But at least now you know the questions to ask.
Brandy Archie
Mm-hmm.
David Banes
You've got some sense of understanding and you don't feel that every phone call is a blank sheet. And I think for me and for many people I speak to in care, not feeling so lost, feeling a little bit more in control and most importantly, not having to spend that huge amount of time. Cause you don't want to be your family member's administrator. You want to have a relationship with them and that paperwork is
Brandy Archie
right.
David Banes
comes a barrier in that relationship if you're not careful.
Brandy Archie
I'm so glad you brought up that as an example. I have been using AI to do that for my own self, like as a business owner and like get these long contracts. And I'm like, and I'll prompt it to say, what is the most important things for me to know from this as the CEO or as the employee or as the whatever your role is. And then it surfaces those. And now I know where to look more deeply at it. Like, this is in there. Let me go find that exactly.
so that can just understand it in my own words. And so because I've been doing that so frequently, I kind of forget that not everybody has had that experience. And just the other day, I was working with a patient who has a brain injury and is living alone but still needs some level of support. And he also is going through a legal issue. And so he had these documents that he basically didn't have the attention span to read through and understand. And I said, well, why don't we try to do this added on chat. He had no experience doing this.
And once we, his literal jaw dropped, right? And because he was like, I understand that and I can ask you more questions. I can go through as many times I need to to retain the information because he has a brain injury. And that's like allows him a level of independence that he probably wouldn't have had without it.
David Banes
Yeah, I think that's absolutely right. I think that's absolutely right. You know, we always talk about the importance of consent for the person with a disability, but that consent has to be informed consent, that they understand the consequences of the decision. And the documentation can be a huge barrier to informed consent. It's actually not informing, it's confusing. We end up with this confused consent.
Brandy Archie
So my question, go ahead.
Brandy Archie
Right.
Brandy Archie
So yeah, that's totally true. So now he can understand as opposed to his sisters or somebody just saying, hey, just sign right here. Like he doesn't know, you know? And technically he's in control of his own life, but you know, he needed a little extra support. And so what are, so that's a great easy way to like help make caregivers lives a little bit easier. Cause you have to deal with so much documentation paperwork. Do you have another example of a way that you feel like AI is helpful to caregivers?
Emilia Bourland
Mm.
David Banes
Yeah, I think you start off with, again, one of the things I often find out when I've spoken to caregivers over many years, the things that cause them the biggest level of stress and anxiety is not the big things, but it's the constant flow and need to do little things. They're very small things. said, she said, I'll give you an example. It's not
that I need to find a book for my brother to read is that he then wants me to turn every page. And he said, that's what, cause that's a constant disruption to trying to do anything else in our house whilst I'm there and so on. And I think that that understanding of how we get back time by reducing some of the burden on the small things as is important as the big things. And I think this is where home control systems and AI
become really important. most of the families I worked with, particularly in the Middle East, any young person with a disability is going to stay living with their parents for most of their lives. Partly culturally that's very acceptable and it's something which actually without a disability you often stay within the family. But that does create certain demands upon the family throughout the day.
So smart home technology, and perhaps at one time we talked about it as environmental control systems, but smart homes are a mainstream way of controlling the environment and the integration of AI really brings in this element of anticipation and prediction. So we can start to see how things like voice control can be used to set up a routine for somebody.
How those can be used to change the position or close curtains, close windows to change the temperature in a room without having to call out to mom or dad to come and do it every time. I can't see the TV screen because the sun has dropped to a certain position. Can we just close the curtain a little bit so I can see it properly? And it's those sort of things. Can even just, can I change the channel on the TV? Actually, AI technologies help us to do that.
David Banes
And I think that those small things in the environmental control systems are really important. But I would take that a little bit further in this idea of prediction and anticipation of needs. That actually a lot of us have certain routines that we do every day. So, you know, as somebody now who may find himself awake in the early hours of the morning. Now there's only one place I need to go.
at two o'clock in the morning you'll have suddenly woken up. So at the end of the corridor and it's in the dark. So if I start, I can set up systems which say if I start to open the door and walk down the corridor, turn on all the lights so I can see where I'm going. I don't need to call somebody else to come and help me go from A to B if I'm mobile, but I do need the lights on. So that prediction, that anticipation that we think we know where you're going.
Brandy Archie
Yep.
David Banes
and we can get that ready, we make that movement easier for you. So I think that some of these things, that prediction and anticipation, that spreads out into all sorts of other areas in the future. But using AI with home control systems at actually really quite low cost, because they're based around consumer technology. Whether it be a smart speaker, whether it be a phone, all of these things can be linked together really quite cheaply. And of course, anybody in the family can use them. It's not just.
Brandy Archie
Mm-hmm.
David Banes
for the person with the disability. There's no stigma to those systems.
Emilia Bourland
really love these examples that you're bringing up because it is so much easier to access this kind of technology now than it used to be. I remember when I was first in graduate school, it was before any kind of smart home technology. And so when we were learning about like home control systems for people with disabilities, it was like hardwired tech, radio frequency, it was very expensive to do. And now,
David Banes
Yeah.
Emilia Bourland
anyone can go out and really without having to do a construction or anything like that can make their home more or less into a smart home. it's so, it creates so much more equity and evens the playing field for people's ability to be independent at home. And like you said, it doesn't feel, it doesn't feel weird to people.
It feels normal. feels, it's very normalizing, you know, to say that, that everyone is using this tech. makes everyone's lives easier. and it doesn't single people out. really promotes this idea of, universal independence. And so I just, I love that example. I'm wondering if you have examples of AI that are being more specifically used for people with disabilities.
David Banes
Yeah, so I mean, think some of the things that are also extremely helpful is,
Emilia Bourland
And hold on a second. I'm sorry. Can I interrupt you? There is someone actually at my door. So actually I'm gonna, I'm gonna go. You can keep talking if you want to and answer the question. I don't, I don't know how you guys want to do this. You can go and keep talking in for the question. I'll mute myself. You can just start that answer over and we'll edit there. And I'm really, really, really sorry.
David Banes
That's okay.
Brandy Archie
Yep, that works. Because I was going to ask the next question anyway. So I got this marked. We'll cut that part out. And I'm ready for you.
David Banes
So yeah, there were many, technologies that are using AI quite specifically. One of the ones that I really quite like, and I think it's really helpful for a lot of people, is AI technology that's recognizing objects, people, and things like banknotes and so on, and then describing to the person what's there. I think some of the things that we're always quite anxious about is
Does everybody have the information that they need? So particularly, maybe as you get older and issues of dementia and so on can kick in. Things such as AI that will recognize and tell you who a person is can be really helpful. Just to describe who they are, perhaps even when you last met them would be the sort of thing that is certainly a next step of being able to recognize people. But also objects.
Brandy Archie
Mm-hmm.
David Banes
I found a lot of people using things like seeing AI to be able to tell them when they lose their vision, what is this thing I've got in my hand? What exactly is it? Because the shape may not be enough. And if you lose your vision when you get older and you become dependent on someone, you're probably never going to learn braille. The chance of learning braille at 60, 70 years old is really challenging. But something that would say, I know what this is, this is jelly, this is coffee.
Brandy Archie
Right.
David Banes
this is whatever, is actually really helpful if your vision has become the point that you can't actually recognize things from there. So seeing AI is a really good example of products and there's a whole range of others that do that. And we're seeing products that maybe initially started by offering individual personal guidance where a person was at the end of an internet connection and would talk you through
where you are, what you're doing, what's around you in the environment, steadily being enhanced by AI doing that. And that helps reduce the cost, but it also means that there's an on-demand. If there isn't a call handler available, the AI can do a pretty good job to get you started. I think that's really important as well. Products like Aira, as I mentioned before, Seeing AI, and particularly Be My Eyes, are really helpful for people who are going out into
community and be my AI as they call it. And you want to be guided where you're walking. You want to know, am I going the right way? And these technologies will help you find your way. And there was a really nice, I was working with some young people with learning disabilities a few years ago now. And they all needed to, they wanted to get in a situation where they could walk
from the day center, the day services they used back home. It wasn't terribly far, but you did need to follow certain pathways. And we use a quite a nice little program, which at that time was called Hot Stepper. Hopefully it's still available. And what Hot Stepper did, rather than following a line on the sort of augmented reality, it used AI and to some extent AR to follow this little pink man.
in shorts and a little hat and you followed him along a route to get back home or back to the day center in the morning. And I think those sort of things are really interesting as well. They're actually making it easy for people to be independent in the community by following a route that's given. And if you want to, you can build in a degree of monitoring for the family so they can see that you got there safely and they see that you're on your way home and can watch out for you and know that you've got there okay.
David Banes
But that independence of not needing somebody to come and come with me and take me step by step, as well as again, that lack of demand upon the family. These products, which are particularly aimed for people who are confused with learning disabilities, with visual impairment, are really helpful.
Brandy Archie
love that you brought up those examples. I spend so much time using AI on my computer, I kind of forget about it being integrated into devices. seeing AI and Be My Eyes are like transformational levels of technology that existed before AI and now are better with AI. And so I'm so glad that you brought that example up, especially because so many people lose their vision or lose their functional vision.
David Banes
Yes.
Brandy Archie
as they get older because of the age-related eye diseases. And you're right, they don't go to voc rehab, they don't learn how to do braille, they're often not getting access to an orientation and mobility specialist in order to learn how to navigate the world without vision, because we don't have systems set up that way that encourage you to do that when you're at an older age, and these technologies can allow you to do it. The thing that I thought was interesting that you brought up was like,
and built into some of these technologies is like facial recognition. can describe to you who's in front of you. And it makes sense for somebody with low vision, but I hadn't thought about it for somebody who might just forget. And so have you seen, how have you seen that being, like how does that show up in the world? It's like a pair of glasses. Is it like something that attaches to the glasses or a speaker in the ear? Like what is the way that somebody who has dementia maybe might wear it?
David Banes
In this world, we sometimes talk about redundancy. And in this case, redundancy means that there's lots of different ways of doing the same thing. very nice dog, by the way. I don't know that's who you had to let in. So this idea of redundancy, because one single approach isn't necessarily suitable for all people. So initially, when we were doing this a few years ago, it was basically augmented reality on a smartphone.
Brandy Archie
Uh-huh.
David Banes
You just held your phone in front of you and followed the dancing man. But you're quite right. We're also seeing that idea being built into things like smart canes, where tactile responses, vibrations tell you which way to go. Or a little headset. So your phone connects to a headset and it tells you, know, walk on 30 yards. If you know a yard is roughly a long step or whatever, then you know roughly how far to go and then turn right, turn left and so on.
Brandy Archie
Mm-hmm.
Brandy Archie
Mm-hmm.
Brandy Archie
Mm-hmm.
David Banes
And also I think things like the next step is without smart glasses, the integration of displays that you're looking through so that you're getting this sort of information presented visually to you. think for certainly for people with confusion, with learning disabilities, the idea of augmented reality where we add very, very easy to consume data to
the real world is a big step in the right direction. We don't have to go down and look at our phone. We don't have to listen to something. Again, in this case, we just follow the line or follow the dancing man.
Brandy Archie
I got you. Okay, one more question though about half stepper specifically. Does it recognize streetlights? And like does the man stop?
David Banes
no, this is purely root finding. So, but I think, you know, the point you make is a good one. That is the next step. So I was talking to somebody, in a few days ago, and he's developing technology for use in the home for people who are deaf and hard of hearing, which recognizes sounds in the environment and converts them into text or tactile or visual.
Brandy Archie
Got it. Got it.
David Banes
indicators. if you're a parents of a person who's so if you're deaf parents and your child starts crying it will tell you baby crying and it will come up on if you've got a smartwatch or whatever come up on there wake you up and say your baby's crying.
Brandy Archie
Got it.
Brandy Archie
Mm-hmm.
David Banes
Now that's really good there, but also in terms of getting that sense of security. So if you know that your son or daughter has got this and let's say there was an alarm went off at home.
they would get notified at the same time as you did. So they may be a little bit more prepared for when you go in and say, have to get out. You the house isn't safe or whatever. So I think these sort of notifications and alerts also really important because in this case, they buy you a little bit more time and it warns somebody of something that needs to do. But if you think of that technology in the environment, here in the UK, whenever for most of our
Brandy Archie
Mm-hmm.
David Banes
Crossing points, there's an audio cue. So if you know that your system is also recognizing those audio cues, that beeping sound, and is telling you wait, and when it either changes or stops, tells you it's safe to cross, and you can integrate that into the previous technologies, we're all these different sensors and combining them to give independent mobility within the community.
Brandy Archie
Mm-hmm.
David Banes
All of these things are about what is possible and enhancing existing products. Not all of AI is about something new and replacing what we already do. Often it's about enhancing what we already do to have greater impact.
Emilia Bourland
That's a really good point. And I think that that's something that can make AI a little bit less scary for folks. think sometimes, especially if you don't use it at all, if you're less familiar with it, then it can be kind of scary to think like, this is going to replace all of these things. And actually, you know, the way I use it in my own life, the way we use it at LumaLink to help support people, the way that lots of different technologies use it is to integrate into other things in order to make.
that experience, easier, faster, more consistent, know, all of these things. So I think that's a really great point. I want to change directions in the conversation a little bit because I'm just genuine, I'm just really curious about this. So in the States, we have the Americans with Disabilities Act. And from that, we have their
are so many impacts of that that basically make it so people can get accommodations, it makes it so kids can go to school more independently if they have disabilities, it makes it so public spaces are more accessible, but there's a centralized law that that's around. Is there anything like that in the UK or Europe? how do you, and if not, how do you work to advocate
for implementing better accessibility with or without AI kind of as a whole, if that makes sense.
David Banes
Yeah, I mean, in Europe, for instance, we've just had the European Accessibility Act brought into law. And this requires companies selling products and services to ensure, particularly in technology, that they will work for people with disabilities. So across the world, we're seeing a lot of legal change and policy change with an expectation of greater
integration of some forms of assistive technology into mainstream devices. And where that integration doesn't happen, that they will work with assistive technologies. And it's a requirement of the developers to make sure that that happens. Now that gets really interesting. We start to think about things like health monitoring. So we have lots of health monitoring systems around where you have a wearable and it gives you your heart information, blood pressure, and so on.
Emilia Bourland
Mm-hmm.
David Banes
And these are really important. But I think what we're going to see is that those health monitoring systems for the whole population are now going to become much more accessible in terms of the way they present that information and perhaps trigger responses. I think linked with that, I've been looking quite a lot at things that are called tonal analysis. One of the things that I think is quite interesting with AI, and again, I come back to experience with
friends and family and so on. One of the things about being disabled, even with your own family, is it can often feel quite lonely. Other people have got other things to do. There was a wonderful quote from a guy I read online. He was autistic, he was in his 20s, and he said online, I had a huge insight yesterday.
I suddenly realized that my autism is not the most important thing in everybody else's lives. And I thought that was a really, well, probably a remarkable thing to say. But he suddenly realized that actually when people can't come to me, it's not because they don't want to, but because there are other things that they need to do. And that understanding that helps me understand a little bit more about some of the other things.
So one of those things about loneliness and communication is who is there for you to talk to when a family member isn't available? And we're seeing the growth of AI friends, companions, who you can talk to and who will ask questions not about anything important, but about the things that you're interested in.
alter ego my other life is I'm a huge fan of Manchester City Football Club. Tomorrow I'm going up to Manchester to see a game and so on.
Emilia Bourland
Well, I'm sorry David, but we're a Chelsea family.
David Banes
Well, I'm, you know, every family has its own problems. That's all I can say to you and me.
David Banes
but I can see already how, you know, having, if I, that was the case and I couldn't go to the games and I couldn't connect to other people easily, having an AI assistant that said, have you heard about the team changes for the next week? Apparently this is going to happen and you could ask it. So what's happened to player X and it will tell you, he's injured. Apparently, you know, we understand he's injured. Now that's really interesting. Just in companionship, having somebody to talk to about nonsense.
really. But there's another element to that which I think is really important and it really relates to these loneliness issues. There's this idea of tonal analysis where the AI is not just listening to what you're saying but how you are saying it.
So it can say things to you like, you you've been talking to it for a few minutes, says, you sound a bit down today, are you okay? You sound depressed, is everything all right? And you can choose whether or not to answer or not. But you can also begin to think about building in triggers. So it can say, you've said that you're feeling like you're finding today hard to cope with, would you like me to phone your brother so you can talk to
Or would you like me to get in touch with your support service and call somebody to come and see you? And I think these sort of things, again, just particularly where families are providing support, but not in the same house, relying upon the person to call for assistance isn't always going to happen. So some prompts and cues that say, you've told us that when you feel like this, this is what you would like to happen.
Brandy Archie
Mm-hmm.
David Banes
we're going to suggest it to you. It's still about consent. It's still about your permission. But you let the system know when you're on a positive mood, what you want to happen when you're not. And I think those sort of things we're going to see very rapidly. And again, you could see how that works both for seniors as well as younger people with disabilities who want to live in their own homes, who want to live independently.
but it's not just about being able to cook or use the bathroom. It's about social exclusion and loneliness as well.
Emilia Bourland
Brandy, I know it's your turn to ask a question, but I have to ask a follow-up on that one. I, because I really loved, maybe I don't even have a question, but there's something that you said that I really loved, which was...
Yes, we can use AI to do these things, at the end of the day, having it facilitate a human connection is actually the goal in those kinds of situations. Because I think that what gives some people hesitancy and pause, and what I really worry about personally, is that people will form deeper relationships with their AI than they will with the actual people around them. And that
you know, to your point earlier about like chat GPT, sometimes chat GPT gets things wrong. Well, if we're relying a hundred percent on AI to lead that conversation, well, we don't, we probably don't always want it to do that, right? Because we have maybe vulnerable people having conversations and we want to make sure that it's a really safe situation for them. And so I love, you know, how you really mapped out that journey to where this can be the benefit, but also
at a certain point, can we call, can I help you connect with your brother? Can I help you connect with your therapist? Can I help you? It's about also facilitating that human connection and how powerful that can be. So I just wanted to thank you for saying that actually. I guess I didn't have, I didn't have a question, but Brandy does.
David Banes
I think this is a really good point, Amelia, Verandi, because we know from the research recently is that one of the tendencies in AI models is to reinforce what you're saying. So if I, again, to take our stupid example, if I say Manchester City, greatest club in the world, it's not gonna come back and say to me, you know what? A lot of people think Chelsea are better.
Brandy Archie
Mm-hmm.
David Banes
It's going to reinforce what I said. You're right. Manchester City won these trophies, did this and so on. Now at that level of nonsense, not really a problem. But the next step on is, you know, if it gets it wrong with something important, like I'm not eating and it says, well, you know, it's always good to lose a little weight, isn't it?
or you know it's very healthy not to have lots of meat or so on and so on so it reinforces the fact that you're not eating or it reinforces that you don't want to see people because people are annoying aren't they?
There's a risk. So, but what I would say at this stage is I don't think we realize how early a stage we are at in how the AI is being developed. We said earlier, we wanted to look at some of the risks and challenges as well. What is so important at the moment is that the AI models, the language models that are being built and so on are including
people with disabilities, with different needs, whether it be health and medical needs or social needs. Those data sets have got to include our input. Because if we're not included in the data, the responses that come out the other way will make huge assumptions about us. So it's no good having data that's based on 25 to 35 year olds all working in technology.
It's got to understand that many of us are older, younger, not working in those fields, not ever going to work in those fields and so on. So the data is really important, building inclusive data sets. So what I would say to families and carers is, sometimes you're going to be asked that when you're using something, can it be used to improve the quality? And think really hard about that. Because if you say no every time, the quality of the AI
David Banes
the people who will most get this huge benefit from it isn't going to happen. It's not going to be there in the way we want. And that is going to be a huge missed opportunity if we let that happen.
Brandy Archie
Yeah, think that's such a good point. I love how you talk. I think you could probably see me and Amelia smirking when you first started talking about AI companions because we spent a decent amount of time talking about it on a previous episode. And the nuance that can be lost there because of how right now AI is very sycophantic and gives you back what you want and...
That's okay if we're talking, and I've used almost the exact same example as you. I used talking about the Chiefs because that's my team, the American Football League. And so that's like not important, but it's fun to talk about. And maybe you don't want to talk about that with me, right? But if we don't have some barriers and guardrails or set the models up in a certain way to do the things that you just said, they can totally run off the rails, but it also could be super helpful and useful.
And so it's in that nuance that I think that we typically hear anyways try to legislate, but it takes so long to get legislation to pass. And that, you I just hope that we're putting things out into the world that somebody picks up and hears and is like, yeah, it is actually kind of important that we include that. So I'm glad that you said that about our voices being heard within the development of this technology, because we can't always wait on legislation.
David Banes
And I think we have an extra dimension which is going to be challenging and why I do think families and people with disabilities have got a voice to put forward here. The legislation and policy that's been drafted is not really based on our needs. What it is, it's been based on mainstream needs, particularly things like privacy. Now we did some research a few years ago, two, three years ago.
Brandy Archie
Mm-hmm.
David Banes
And we found that many people with disabilities and their families were prepared to compromise much more on privacy because the benefits they thought they would get from it was so much greater. All the things we've talked about, time, lack of stress, lack of anxiety, independence, communication, interaction, involvement in the real world and so on, those are such huge benefits that sometimes have been very, very difficult to achieve.
Brandy Archie
Mm-hmm.
David Banes
But if the policy is written that prevents data being used to do those things, then we're not going to get those full benefits. So really we're looking for policy that acknowledges that actually one size doesn't fit all in this case. The cost benefit analysis for a family, maybe with a child with a disability or a sibling or a parent.
the benefits may outweigh the costs in ways that they don't do for other members of the community. They will do one day, but not at the moment. And that's asking a lot of policymakers to understand that diversity, that not everybody gets the same benefits or experiences the same costs.
Emilia Bourland
think that we could talk probably for hours with you about this subject and you are such like a wealth of wisdom on it. It's just really enjoyable to hear you talk about this subject and you are really a great educator on it. So I wanna thank you so much for that and for your work on this. We're gonna come to a close here though before we finish.
I would love to ask you one more question, which is where can people find out more about the work that you do? And what's one piece of advice you would give to folks to be better advocates for themselves in the use of AI to help everyone live the lives that they want to live?
David Banes
So certainly, I mean, people will find if they come to the Equitable AI Alliance website, that's part of the Xero project, they will find some information there. And that's right. I do think that I would also really recommend that to occupational therapists as well. Familiarize yourself with this, including some of the technologies that are now being available that will match people to the other types of assistive technology that they need without your involvement.
That's quite a helpful thing now for families where they can buy things directly from Amazon or so on, using AI to help match and find those needs. So yeah, come to there and find that, have a look around. Use AI to ask the questions. Say a little bit about yourself to chat GPT and say, how can artificial intelligence help me? Give me some real examples and it will do.
You don't have to go searching on the web. It will give you real examples. But when you do that, always remember to think about what you're seeing critically. Talk to other people on social media about what they're using and what they're not using. And I think from the advocacy point of view, never be scared when a new product is brought in by any of the big tech companies, when it's brought in by your local city council or district and so on.
Tell me how this helps people like me, my family, my children, my parents, and tell me how you're making sure they're safe when they use it. Ask those simple questions over and over and over again. Because I think when we, the more we do it, my wife has a theory, it's the pizza theory, okay? Which is, she says, when she was younger, she would not eat a new food until she had tasted it 10 times.
and then she would get used to it and should start to eat it properly. This is how I introduced her to pizza when we were at college together. However, there's another way around that. If you don't tell people the same things 10 times, they're never going to buy it. So don't say it once, don't say it twice, but say every time you're engaging with this technology to make sure that people hear it from lots of voices and they hear it over and over again.
Brandy Archie
Well, David, I'm really grateful for you being here and thank you so much for sharing so much with us. And we'll have, make sure we have the links to your website in the show notes so people can find you. And if you, dear listener, have made it to the end of this episode, we greatly appreciate you and hope that it was useful to you. And if you'd like to help us make sure this reaches other people, please do like and subscribe on the platform that you're listening to it on and leave us a review so we can know if we are hitting topics that are important to you and just let us know what you want to hear more about.
and we'll look forward to hearing you and seeing you on CareLab in a week. Thanks.
David Banes
Been a pleasure.
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