Sam Woods
Digital Communications
One and a half million people. Most have never been asked what they'd like to do with their own money. The Aviva Foundation and Mencap are changing that.
The Aviva Foundation is funding Mencap to deliver financial confidence workshops for people with a learning disability across England, Wales and Northern Ireland. Workshops designed and created alongside the people they’re for.
That’s why Jo, the project manager leading this work at Mencap, has been travelling around, visiting other Mencap projects, and talking to people with a learning disability about managing their money.
She wants to know what’s working and what isn’t. She wants to know what they want to know, or what they need help understanding, so it can be included in the workshops.
Recently I did a bit of travelling of my own and visited Mencap’s London office to hear what she found out, to learn more about what the organisation does and about the project that’s being funded by the Aviva Foundation – as well as to gatecrash one of their co-creation sessions.
It wasn’t that much travelling though. Their office is literally just around the corner from Aviva’s. Handy, that, when you’re hauling so much filming equipment
‘The way things are and always will be’
Jo is one of those people that you just want to talk to. Warm, friendly and funny, I was immediately struck by how well suited she is for the work she’s doing. I saw firsthand how people open up to her, even about money - something lots of us find awkward to talk about.
Sitting down for our interview, she explained how important it is to hear the stories that people share with her.
Jo told me about a man she’d met at one of Mencap’s projects that is not focused on living or financial skills. He lives on his own, she said, and he lives independently. He’d told her, during a project consultation meeting, that there are times when he doesn’t have enough money for food by the end of the month.
... One person said to me, "Yes, I've had times when I don't have enough money for food to last me until the end of the month."
That was one of those learning moments where you think, "Wow, this is why [this project] is needed."
Nobody had ever sat down with him, Jo said, and worked out whether he was receiving all the benefits he was entitled to. Nobody had taught him as a young person or adult about budgeting. Nobody had asked if he knew where a food bank was.
He’d just accepted it as the way things are and always would be.
And that, really, is the problem Mencap’s project, funded by the Aviva Foundation, is trying to solve.
A substantial chunk of our society
Mencap is one of the UK’s leading learning disability charities and Jon Sparkes OBE, Mencap’s Chief Executive, put their purpose to me simply.
“We exist so that people with a learning disability can live life to the full.”
Living life to the full came back a lot during our conversation but when Jon started laying out the numbers, there’s an obvious gap between that ambition and the current reality when it comes to money.
“There are one and a half million people with a learning disability in the UK1. This isn’t a small marginal group of people who policymakers and businesses can think are irrelevant. This is a substantial chunk of our society.”
“This is one and a half million people who on average will die 20 years younger than the general population. If you think about their employment, 76% of the UK adult population has a job. For disabled people, that’s more like 50%. For people with a learning disability, that’s half as much again.”2
This obviously has an impact on financial confidence, and Jon was clear about why that matters.
“In so many ways, money is a gateway. It’s access to choice to be able to live the way you want to live.”
In living life to the full, in other words.
Nobody had ever asked
That’s the big picture. But the man who couldn’t afford food by the end of the month wasn’t the only story Jo brought back from her conversations. Across everyone she spoke to, a pattern was appearing.
“Nobody I spoke to had ever been given, as an adult, any information about budgeting, about where their money comes from, about how much is coming in, about how much they have to spend on their care or their bills.”
“From the people I’ve spoken to,” she told me, “most people were almost resigned that what’s happening currently is what should happen or what is possible.
Jo said she’d been surprised at how many parents were still managing their adult children’s money. Daily cash allowances were common, and that creates its own problems in a world that’s increasingly cashless.
“If you’re going to the cinema, for example, you may not even be able to buy your ticket in advance without a card.”
Then there was the question of what people weren’t being allowed to do with their money. Jo told me about a young man who’d racked up some debt - spending on beer and gaming, she said. His parents weren’t happy. Understandably so, I thought to myself, but then Jo put that in perspective for me.
“Actually, my son’s 21. He spends his money on beer and gaming, as a student. It might be too much time, and I may not agree with how much money!” She said, laughing.
“But he’s allowed to, he has to learn to budget.”
“If you have a learning disability and someone else is in control of your money, then some of those decisions are taken away from you. I think that’s quite a moral dilemma I hadn’t thought about before I started this job.”
“It’s like they’re being held to a higher standard…” I said, talking over my own recording, slightly ruining a take.
“A much higher standard!”
Obviously being in debt because of video games and alcohol is not ideal no matter who you are, but most 21-year-olds make questionable spending decisions. I probably did that myself… But if someone else is in charge of all of your spending, that freedom disappears.
For good or ill, freedom to make your own youthful mistakes is still a freedom.
Like Jo said, it’s a moral dilemma. It’s one that’s been playing over in my own mind for a while after she told me about it.
This young man was something of an outlier though.
“You don’t tend to come across people who have credit cards,” Jo said. “Their money and finances are managed to an extent that they don’t have them.
“I didn’t come across anybody who talked about savings either.
“Parents, guardians, people who work with them are making those decisions to make sure everything’s covered, everything’s planned for, but not always having conversations about ‘what would you really like to save up for?’”
Parents, guardians, people who work with them are making those decisions to make sure everything’s covered, everything’s planned for, but not always having conversations about ‘what would you really like to save up for?’
Vulnerable and scared at the same time
Back with Jon, he continued to frame the big picture for me.
First, cost. Families that include a disabled person tend to spend far more money than families that don’t. Almost a thousand pounds more per month, in fact.3
Second, dependence. People with a learning disability often have to rely on someone else to manage their money – which limits choice and in the worst cases, Jon pointed out, “there’s a risk there to financial abuse.”
Third, complexity. Mortgages, tax… “some of those are really quite complicated concepts and they’re just not explained clearly.”
And it’s getting more complicated, not less, which leads to other issues.
“If someone comes into your bank, or your shop, and they take a little bit more time to understand what’s happening, the moment you’re frustrated with them, the moment you’re thinking beyond them to the next person in the queue… that person who’s had people say ‘no’ and ‘you can’t do that’ all their life is just going to see: oh, here’s another person in authority. Here’s another person who’s stopping me accessing life and getting in my way.”
“And it really puts their confidence back, as well as not being able to do the transaction that they’re trying to do.”
The result, Jon said, is that people feel shut out. “It cuts down on choice. You feel vulnerable and you feel scared.”
Designed by and for
This is where the Aviva Foundation comes in.
Alex Christopoulos, who runs the Aviva Foundation, told me it exists to fund practical solutions and invest in longer-term change.
“For some people, they’re just one bill away from experiencing really challenging times in their lives. What we want to do as a Foundation is try to help people get ready for the future, to look forward with confidence.”
When Mencap came to the Foundation with their proposal for this project, two things stood out to Alex.
“It’s what Mencap wanted to achieve and how they wanted to achieve it,” he said. The programme was ambitious but grounded, with workshops for people with a learning disability, training for staff and families, and resources to share widely.
But it was the way they wanted to do it that really impressed him.
“They didn’t want to design something and do something to the learning disability community. They wanted to do it based on understanding from people with a learning disability, so hand in hand and done together.”
That co-creation approach is central to how Mencap works.
Aneesa Farthing, Mencap’s Head of Communities, was clear about why.
“In practice, co-creation means involving a person with a learning disability from the start,” she told me. “It doesn’t mean asking them for feedback or opinions at the end when you’ve already designed a programme. They have a role in shaping the language that we use. They’ll help us design the resources and the materials. They’ll help us define what success looks like, because they’re leading it.”
Jon said co-creation means people with a learning disability are involved not just in what the answer is but in framing the question.
I got to see some of that co-creation in action. During my visit, between interviews, I’d been roaming around Mencap’s offices with my camera, filming some b-roll of colleagues at their desks, or in their kitchen area, people chatting and working together. Now, in the same meeting room where I’d interviewed Jo a few hours before, a co-creation session was underway.
It was a proper mix of people. Some were regulars at Mencap’s projects, some worked there (I recognised a few faces from the b-roll I’d just filmed), and some had travelled down on the train specifically to take part. A couple of Aviva colleagues had used volunteering days to escort them from King’s Cross and back, and they’d stayed to join in too.
At one point, a wheel-of-fortune style spinner appeared. Everyone gave it a spin to land on an amount of hypothetical money, and then shared what they’d do with that sudden windfall. Holidays came up a lot. Gifts for family. One person did say they’d save it, which got a round of nods and agreement from the table – no surprises, but it might have been someone from Aviva Investors who said that.
Jo was in the middle of it all, making sure everyone was comfortable and everyone got heard.
It was during sessions like these that Mencap found something they hadn’t anticipated.
Luke Brookfield, the community programme lead, described a moment from one of the co-production groups that almost totally shifted how the team thought about what the workshops would cover.
“We had someone who had absolute zero knowledge of how to manage their own money,” he said.
“They had zero knowledge around budgeting, benefits, paying their own bills. We thought maybe the workshops might be more top-level stuff. But now we know we will have people who are coming on these workshops who have absolutely no experience at all in managing their own money.”
He called it a lightbulb moment, and it just reinforced the idea behind the workshops.
“To improve their confidence by five or ten per cent is going to make a real, long-lasting impact.” Luke said.
Making sure no one’s left with questions
The workshops are now running across England, Wales and Northern Ireland.
They’re being delivered by Dosh Financial Advocacy, a charity that specialises in financial inclusion for people with a learning disability, in partnership with Mencap.
Jo told me the Money Charity had described the work as ‘innovative’, saying they’d been pushing for this kind of direct, face-to-face financial education for people with a learning disability for years.
Something else that stuck with me about how Jo described the process was the level of individual care going into it. She phones every participant before their workshop to check what they’re hoping to get from it, and she follows up afterwards to make sure they’ve got everything they need.
“If we aren’t able to cover anything, then we’ll be making sure no one’s left with questions they don’t have answers for.”
The team is also building training for Mencap’s own people and for partner organisations, and developing fact sheets that any charity can use on their website or social media. The training is being built into Mencap’s online portal, so it has a life beyond the project, too.
It’s that layered approach that Alex found compelling about the proposal. It’s more than just workshops for individuals. It’s also training for the people who support them, it’s resources for the families around them and materials that anyone can use.
I had choice. Paul didn’t have choice.
Towards the end of our conversation, Jon told me a story that, I think, explained most clearly why he leads Mencap and why this work is so important.
“The first time I felt the inequalities faced by people with a learning disability was in my childhood,” he said. “I lived next door to a boy called Paul. He was exactly the same age as me, and our lives were identical in every way, except Paul had Down’s Syndrome and I didn’t.
“In the very early years, you didn’t see the inequality at all. We used to play together, we used to go swimming together…
“But then he would be in a different classroom.
“Then he would be in a different school.
“Then he’d be in a school in a different town.
“He will probably have gone on to some supported employment, maybe lives in a care home, and will die 20 years younger than me if the averages work.
“All of that is unfair. I had choice. Paul didn’t have choice.”
Choice. That word kept coming up in every conversation I had at Mencap. Choice over where your money goes. Choice to make your own decisions, and choice in influencing your own financial future. Choice to save for something you actually want.
Jo again put it really clearly: “We want, at the end, that people with a learning disability have choice. That they know what’s possible. And even if they don’t want any changes to their arrangements, they know what’s possible and they have that choice.”
Aneesa described what it looks like when that shift starts to happen.
“When someone goes from feeling excluded to feeling more in control, it’s often small moments, but really meaningful moments. It could be something as small as somebody feeling confident to ask a question that they wouldn’t have asked before. You may even see their body language change. They might relax. You see the confidence just in their face and in their body.”
And sometimes, she said, it’s even simpler than that.
“It can be moments when people say something as simple as, ‘I can do this.’”
“They may seem small, but those moments are really life-changing for the people we support.”
What’s at stake
Jon explained what happens if this kind of work doesn’t get done.
“The problem if we don’t fix financial confidence is that people who are shut out, people who have less choice, will be more shut out and have even less choice.
“This isn’t standing still. If access to the financial system is becoming more complex, even if we stand still, people become more locked out.”
That sort of summed it up. One and a half million people, a financial system getting more complicated every year, an increasingly cashless society that doesn’t work for everyone, and, until now, nobody asking the most basic questions.
The workshops are running now. They won’t fix everything – there is no magic solution for every issue, as Alex had said to me.
But for the man who couldn’t afford food by the end of the month, or the young folk whose spending is being controlled, or the people who’d simply never been told what was possible, they might be the first time anyone has sat down and asked: what do you actually need?
And maybe… what would you really like to save up for?
Watch Ready for Tomorrow Episode 1: Financial confidence
One and a half million people in the UK have a learning disability. Many have never had a conversation about their own money. This film shows how the Aviva Foundation and Mencap are working together to change that, building financial confidence workshops designed alongside the people they're for.
Ready for Tomorrow: Financial Confidence
Our new documentary series shows how Aviva is helping the UK get ready for the future. In Episode 1, we meet Mencap and the Aviva Foundation to explore how financial confidence can help people feel more in control, more confident and more ready for what comes next.
Transcript for video Ready for Tomorrow: Financial Confidence
I always remember a story a young man told me once about what it felt like to not have money, to be poor. And he said it felt like he'd lost his layer of skin. And to him, that meant that even just a gentle brush past you is going to hurt. It meant that if you got hit, it was going to go deep. And he said that people can see it all over you.
There are one and a half million people with a learning disability [in the UK]. This isn't a small, marginal group of people who policymakers and businesses can think are irrelevant. This is a substantial chunk of our society. So Mencap is a learning disability charity. We exist so that people with the learning disability can live life to the full. And that means having choice over their lives. It means having access to their community. So making sure that if people have more profound needs, that the support is always there for them to get up in the morning, to eat safely, to get the toilet safely, to get out into the community. People who have maybe less need, making sure they have the ability to see friends, to get a job, to live life the way they want to live it.
Financial confidence is really important for everybody and it's certainly important for people with a learning disability. So, we're going to be leading on workshops for people with learning disabilities across England, Wales and Northern Ireland. And the workshops are going to cover a range of aspects of finances and money, but the core content will be around budgeting and planning, where your money comes from, what sort of things you need to pay for, but also your choices in the processes and what your rights are too.
So, our partnership with the Aviva Foundation is really important on many levels. I mean, first of all, and fundamentally, if we're working on financial confidence, then here's an organisation that does financial confidence. So, you know, one of the things we always think in a charity is we can't do everything. There are experts in things that are important to people with a learning disability. There are experts in finance, there are experts in transport, there are experts in employment. We want to make sure we're working with the experts. So, the expertise that comes with a partnership with the Aviva Foundation is really important.
So the Aviva Foundation is a charitable foundation that focuses on helping fund practical solutions for today's problems and investing in longer term change. So we're focused purely on social impact. The future the Foundation is trying to support is to help people weather life's shocks that come along. For some people, they're just one bill away from experiencing really challenging times in their lives. And so what we want to do as a foundation is try to help people get ready, look forward with confidence to the future.
I think for everyone, feeling confident about money is a complex subject. people have said that banking and building societies can be difficult, that the majority of the resources, the staff aren't necessarily trained to work with people with a learning disability. So, there's very little easy read materials which is accessible for people who may struggle to read long-winded banking information. Also, attitudes. Quite often, people will talk to parents or carers and not to the person who's just asked them the question about their own banking.
some people told me that their parents will give them a daily allowance. And quite often that's cash. And that causes problems because as we move to a cashless society, if you're going to the cinema, you may not even be able to buy your ticket in advance without a card. you don't tend to come across people who have credit cards. But on the other hand, I didn't come across anybody I spoke to who talked about savings either. Nobody I spoke to had ever been given as an adult any information about budgeting, about where their money comes from, about how much is coming in, about how much they have to spend on their care or their bills.
I was visiting a project But I said, does anybody have problems? And there's one person said, yes, I've had times when I don't have enough money for food to last me till the end of the month. That was one of those learning moments where you think, wow, this is why it's needed. financial complexity, financial access affects people with a learning disability in a couple of ways. I mean first of all families that include a a disabled person, have a more expensive life than the general population So first of all there's just access to money at all. Secondly people with a learning disability often have to rely on somebody else to support them in managing their money. First of all that limits their choice but also there's a risk there to financial abuse.
When someone feels confident managing their money, they'll have more choice, more control, and more independence. I suppose when that confidence isn't there, they'll often rely on others in a way that they don't want to or they don't need to. And even when there is support with the right kind of education that we are able to deliver as part of this program, can go on to be more independent and be more confident with their money.
Co-creation means people with a learning disability are involved not just in what the answer is but in framing the question. It's so important that people with a learning disability are involved in designing solutions, because they're experts in their own life, and the power of lived experience is huge. You can't beat that. they have a role in shaping the language that we use for a program. They will help us design the resources that we use and the materials. They'll help us look at the workshop delivery that, you know, are part of this program, and also they'll help us define what success looks like because they're leading it.
I'm William Kettle. I'm a Lived Experience Advisor at Mencap. So my role is to provide a lived experience perspective to colleagues at Mencap and also to people outside Mencap too, I advise on policy, campaigns sometimes, projects, But that's what I do for my job. It's important, I suppose, to co-produce it, because then people with a learning disability get involved in the very beginning on it, and if they are, then their views are taken into account and they understand what it is, and it's not just a tick box thing where you just go to the end and say, "Look, how's this?" Because it's not a good idea to do that. From the start is important, if they shape the programs and the projects, then they can give their views, and their views are heard by everyone, and not just people with disabilities, but also people outside here as well. They get to see and hear what people with disabilities think about these sorts of projects,
So we were asked to do a workshop on this to help people with financial literacy. So that basically means to help people with disabilities manage money we kind of plan what those sessions were gonna be
So we were put into groups and we had to answer some questions they were also of like money and obviously what different ways that you can manage money but also what platforms you use to manage it.
So we used a spinner to answer some of the questions. it was, what would you do if you had a certain amount of money? So it was all different kinds of amounts. Some people wanted holidays, some people wanted a day out, some people wanted other things. I hadn't really done that sort of work before, about managing money and obviously, a lot of people struggle with that. It makes life harder, doesn't it? But I suppose if they're given the right support and advice, they don't think they can get through these periods of uncertainty and anxiety in some cases.
So I come to this with no preconceived ideas about what it's going to look like, what it's going to feel like and the kind of change it's going to aim to seek. In some ways what excites me most is I want to see things I haven't expected.
I think in one of our co-production groups, we had someone who had absolutely zero knowledge of how to manage their own money. Zero knowledge around budgeting. Benefits. Paying their own bills. I think we thought maybe we would need... the workshops might be more top level stuff and there may be a baseline knowledge of people being able to manage money, but we will have people who are coming on these workshops who have absolutely no experience at all in managing their own money. I think that was a bit of a light bulb moment for us that we're going to make a real huge difference. we're not just working with people who've already got experience when we're actually working with people who've got no experience at all. So to improve their confidence by five or 10% is going to make a real long lasting impact.
So, I think what we've learned from past projects about what works and what doesn't in terms of, I guess, co-production is it's really important to keep things simple and also make things relevant to the individual, you know, so they can feel involved and really a part of that conversation. what doesn't work is assuming that one size fits all. You're going to get nowhere. And also, if you overwhelm people with too much information, particularly if it's inaccessible.
We designed the face-to-face workshops for people with learning disabilities to be fun, accessible.
We're choosing venues which will be exciting and interesting in their own right. want to attract people with learning disabilities, some of whom have never heard of Mencap, We want to go as far and wide as possible in terms of who comes to our workshops.
You know, a lot of our work is focused on supporting the people with a learning disability to feel more confident with their money. And that's, you know, that's huge. And we've heard about the impact that's going to have. But it's only really effective if we're also working with their support staff and their support networks. And that's what's really exciting about this program, we're able to reach those networks, you know, not just staff, but, you know, we can work with families as well so that they can support their children. And so the change is on lasting.
And so we hope that individuals will have that information that they need. They'll have care and support around them so that there are people who know about money and finances and benefits to help them. also, we're building some of the training on two Mencap's staff training portal so that when this project finishes, staff can still engage in the training online as part of their inductions and as part of their staff training.
So when someone goes from feeling excluded to feeling more in control, it's often small moments, but really meaningful moments. It could be something as small as somebody feeling confident to ask a question that they wouldn't have asked before, or even being able to make more decisions by themselves and for themselves, like paying a bill, or even planning a budget. You may even see their body language change. They might relax. You see the confidence in their face and in their body. It can even be moments when people, you know, they say something as simple as, I can do this, they may seem small, but those moments are really life-changing for the people we support.
Financial confidence is really about choice in how we live our lives. So, the first time I felt the inequality of people with a learning disability was in my childhood. I lived next door to a boy exactly the same age as me, called Paul, and our lives were identical in every way, except Paul had Down syndrome and I didn't. And I watched the inequality between my life and Paul's life roll out from literally from the age of zero to the age of 18. So in Paul's life and my life as as children in the very, very early years, you didn't see the inequality at all. But then, you know, we used to play together we used to go swimming together. But then what we saw was first of all, he would be in a different classroom in the school, then he would be in a different school, then he'd be in a school in a different town. And, you know, there's a complete unfairness in that. And, you know, he will probably have gone on to either some supported employment in some way, maybe he lives in a care home and will die 20 years younger than me if the averages work. You know, all of that is is unfair throughout our lives. I had choice. Paul didn't have choice.
So the problem if we don't fix financial confidence is people who are shut out, people who have less choice will be more shut out and have even less choice. This isn't standing still. If access to the financial system is becoming more complex, even if we stand still, people become more locked out. So I think a huge amount is at stake. One and a half million people not having the same access to money as the rest of the population. When it's one and a half million people who are marginalised in so many other ways, it exacerbates that. And surely as a society, we don't want people to be locked out in that way.
We want at the end that people with learning disabilities who engage in this massive piece of work have choice, that they know what's possible. And even if they don't want any changes to the arrangements, they know what's possible and they have that choice.
Everyone deserves to feel as if they have some element of control over where their money's spent. Everyone deserves to feel that they can use some of their money for things that make them really happy.
So, how will we know it's working by asking people with their own disability what impact it's having on their lives.
Understanding is crucial with something like this, don't be afraid to ask questions about it There is help there available if you want it, or need it, more specifically, if you need it. If they're given the support, they can do things that people think they can't. look at people's abilities not disabilities.
Find out more
Mencap – mencap.org.uk
The Aviva Foundation – www.avivafoundation.org.uk
Dosh – dosh.org
References
1. How Common Is Learning Disability In The UK? How Many People Have A Learning Disability? | Mencap
2. Learning Disability - Getting A Job - Research | Mencap.
3 Scope’s Disability Price Tag research (2023) shows the average disabled household faces £975 a month in extra costs. (Disability Price Tag 2023: the extra cost of disability | Disability charity Scope UK )
