“I lost my benefits at 16 for saying I could cook”
Thousands of teen claimants lose benefits at 16, ѿý data find.
ѿý research has revealed that nearly a third of child claimants of Disability Living Allowance (DLA) have been rejected for adult benefits when they turn 16.
ѿý Data Unit reporter Joanna Morris has been investigating to find out why this is happening, and shares that many rejections come because the forms are addressed to the teenagers who try to complete the paperwork themselves.
That includes Holly Crouch. Holly, who has epilepsy, tells Access All she was turned down for Personal Independence Payment at 16 because she had written on her form that she could cook - even though the risk of seizures meant she could never use the cooker without supervision.
Also on the programme - Jonny Heaver, fresh from being fired as a contestant on The Apprentice, gives an exit interview and talks about living with a facial difference.
PRESENTER: Emma Tracey
PRODUCERS: Daniel Gordon, Alex Collins
EDITORS: Beth Rose, Ben Mundy
SOUND RECORDING AND MIX: Dave O’Neill
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Transcript
11th March 2025
bbc.co.uk/accessall
Access All – episode 150
Presented by Emma Tracey
HOLLY- Do you want some toast?
EMMA- Who are you talking to?
HOLLY- Fletch, my disability epilepsy awareness dog.
EMMA- And did you get Fletch as a pup and get him trained yourself?
HOLLY- So, we got Fletch as a puppy. He trained himself originally, and then we spoke to quite a few people, they came and had a little see of him. He’s quite switched on as a spaniel, and he’s now registered properly, which is really cool.
EMMA- Oh. Has he a little jacket?
HOLLY- He does, yeah.
EMMA- Oh nice.
HOLLY- He’s got the little blue one that says Epilepsy Seizure Alert Dog.
EMMA- How does Fletch notify other people, he goes and annoys them doesn’t he, Holly?
HOLLY- He goes and barks in their faces, he’ll fuss around their legs. He’s a very licky dog when he’s agitated and when something’s wrong, and then he’ll get more and more intense and start barking in people’s faces to get them to realise something is actually wrong.
EMMA- And what’s his success rate?
HOLLY- He’s only ever missed one seizure that I had, and it’s just because I was too far away we believe; I was upstairs and he was in the sitting room. He used to come to college with me and it was quite impressive, the teachers always knew when I was going to have one because he’d just start rampaging around the room, jumping up at them, barking consistently. But he also, whilst I’m having a seizure, he’ll lay on me, a bit like a weighted blanket, legs fully stretched. It makes you feel more comfortable when you come round, you’re more cooperative, because post-seizure you can be not cooperative at all because you’re postictal. It’s where your electrodes are then rebalancing in your brain so you don’t actually know what’s going on. And having that comfort there is quite nice. When you breathe next to someone your breathing goes in synch, and it’s the same with animals so he’ll breathe in synch.
EMMA- Ah, like spooning someone or whatever. Ah cute.
HOLLY- Yeah.
EMMA- What signs is Fletch picking up on that you’re going to have a seizure?
HOLLY- What they actually pick up on is a significant increase of heart rate and your blood pressure, and then apparently very close to the time of when you’re going to drop you release a pheromone that apparently they can sense, which is incredible to me.
EMMA- Amazing. And when he tells your teachers or your parents what can they do to support you?
HOLLY- It’s all about making you safe. You can never stop a seizure from happening but you can put in precautions. So, clearing a safe space; if they can get me down on the floor before I just collapse that’s always a pro; making sure they have my rescue medications; making sure my parents are informed; and monitoring how long it is so we know when to call 999.
EMMA- Oh wow. It’s a pity he can’t use the phone himself, isn’t it, so if your parents were out for dinner or something he could, like, let them know?
HOLLY- [Laughs] he’s not got them on speed dial.
EMMA- Get on the dog and bone, Fletch.
HOLLY- [Laughs] yeah.
EMMA- We’re going to be talking to you a little bit later, Holly, about disability benefits, so something completely different.
HOLLY- Yeah.
EMMA- On with the show.
MUSIC- Theme music.
EMMA- Hello, I’m Emma Tracey and this is Access All, the podcast that prides itself on sniffing out the best there is in guests and news from the world of disability and mental health. I think you lot have really good noses as well, so if you think there’s something that you’ve sniffed out that you think we should be getting on top of then please get in touch. You can email accessall@bbc.co.uk. You can find us on social media @ѿýAccessAll on Instagram and X. And you can get on the WhatsApp, send us a voice message or a text message to 0330 123 9480. Listen, in a little while I will be talking to Jonny Heaver who was fired recently from Lord Sugar’s boardroom on the ѿý reality TV show The Apprentice. He has a tutoring company, he has a facial difference, and we’ll be talking about all of that in a little while.
We know that the government is preparing to set out cuts to the benefits bill in the coming weeks, including payments made to disabled people. And we understand how much that will be worrying a lot of you, so as soon as there is an official announcement we’ll be here to tell you what the impact will be on you. But first, ѿý research has revealed that nearly a third of under-16s who receive Disability Living Allowance have had their applications rejected when they’ve reached 16 and need to move on to adult benefits, so Personal Independence Payments. Child Disability Living Allowance is paid to help with the extra cost of being disabled, of which we know there are many and varied. Our reporter, Joanna Morris, works in the ѿý’s data unit, and she is in charge of the research in question and she’s with me now. Hi Joanna.
JOANNA- Hi, nice to meet you.
EMMA- Nice to meet you too. As is Holly Crouch. Now, Holly was one of the people that Joanna spoke to and interviewed for her research. Hi, Holly.
HOLLY- Hello.
EMMA- Stick with me, Holly. I’m going to start with Joanna here. Joanna, what is Disability Living Allowance?
JOANNA- So, when it comes to children DLA is designed to help with the extra cost of bringing up a disabled child. It can be claimed for children who have got mobility difficulties, those that might need a bit more care than non-disabled children do. Last year nearly 800,000 under-17s were receiving it, and it’s based on the support the child needs rather than their condition or their disability.
EMMA- Okay. And then what happens to these teenagers when they hit 16?
JOANNA- Under the current rules when a child gets to 16 they have to apply for adult disability benefit. They’re invited to apply for this ahead of their entitlement to DLA ending, and they do continue to get the DLA until a decision is made, but there’s no guarantee that they’re going to receive PIP. This is not an automatic transition to adult benefits; they have to go through the same application process as anyone else would. And if they don’t receive it and their carers will lose eligibility for other forms of support that PIP can open the doors to, such as Carer’s Allowance or even Motability cars, transport to school or college potentially. And disabled young people and their families that we’ve spoken to tell us that that support can disappear really quickly and the impact of losing it can be enormous.
EMMA- Joanna, you’ve been crunching the numbers around this, what have you discovered?
JOANNA- Through looking at DWP data that 29% of initial child DLA to PIP claims have been rejected since PIP was introduced in 2013. Now, in real people terms that’s more than 124,000 young people that have had claims rejected since then.
EMMA- Why do you reckon that 29% of children who were getting Disability Living Allowance and are told they need to move on to Personal Independence Payments, why are they being rejected in the first instance?
JOANNA- So, the data we’ve got from the DWP breaks down some of the reasons in a very general way. So, it shows us that some claimants didn’t send the forms back on time; others didn’t show up for their assessments when invited. But the vast majority of the rejected claims failed the points-based PIP assessment. The assessments are based around a series of questions around a claimant’s mobility and their ability to carry out day-to-day tasks. But three quarters of those who were assessed and had their claims ultimately rejected didn’t score enough points to qualify for the benefit.
EMMA- And you found that quite a few of these 16 year-old teenagers with all sorts of different disabilities, including learning disabilities, autistic kids, lots of different impairments, were actually filling out the form themselves. What has that meant? What’s the implication of that?
JOANNA- There are a lot of people out there who are filling the forms in themselves. Parents can apply to be their appointees and to act for them during the process, but those who feel able to can and do represent themselves. But that can bring issues with it I suppose. Experts have told us that the young age of this transition, coupled in some cases with learning disabilities for example, can sometimes mean that an applicant doesn’t have the best understanding of the kind of nuanced answers that are required to score points in the PIP assessment process. We’ve heard several examples of young people going through this process, and among those we’ve heard about who have had their claims rejected, for example there’s a young person saying that he could prepare meals for himself, but the assessors weren’t aware of the fact that he’d blown up several microwaves in the course of a year.
EMMA- Let’s bring in Holly Crouch now. Joanna interviewed you for her research.
HOLLY- Yes.
EMMA- Why did you get DLA in the first place?
HOLLY- So, I have epilepsy. It was really impacting my life and the way I could do things, but it wasn’t just impacting mine, it was impacting my parents’. It meant that I wasn’t able to do anything independently, even down if I wanted to go to the shops or just to town with my friends it meant that they had to be there really, taking me to school. So, it impacted the fact that the independence was completely lost, which made my parents have an extra cost that you don’t necessarily expect with a teenager. They don’t expect to be taking them everywhere and having to pay for the petrol to get everywhere. It just disrupted their lives as well as mine.
EMMA- It’s been five years since you turned 16, but what happened when you got to 16 and you needed to change from Disability Living Allowance to Personal Independence Payments?
HOLLY- It’s a very complicated system probably is the first thing I’d say. It’s not an easy process to do, to the point that I didn’t do any of it, it was my parents. And originally, from what I know, my claim got rejected because I didn’t meet the points for PIP. And I think the main reason for this is epilepsy is such a fluctuating condition that you answer some of the questions, a bit like what was said before, I can cook, yes I’m very able to cook, but because epilepsy is so unpredictable I put yes, but realistically it’s one of those things that I can cook but if I’m using boiling water you’re subconsciously very, very careful. At any point I could have a seizure and then that means major potential burns and stuff. So, they’re very direct questions that you get asked; there’s no room for if, buts and maybes. And I think that’s something that needs to be changed because the form doesn’t necessarily allow for all of the different conditions.
EMMA- And it’s hard, isn’t it, especially when you’re 16 to talk about in, say an assessment situation, the things you can’t do when you’re trying to find your place in the world and trying to work out what you can do and trying to do more than you should do in some ways, some points?
HOLLY- Yeah, 100%. But I found for me anyway you sort of hide how bad things are because you put on a smile and you want to make everybody’s life as easy as possible. And also everybody around you, all your peers are growing up to be able to do things that you can’t, and you don’t necessarily want to admit that actually I can’t go to town on my own or I can’t get from A to B like you can. And it’s hard, because if you don’t have PIP or you don’t have the government’s almost faith you can’t get the things you’re entitled to; you’re not longer allowed to get the disability bus pass and the disabled person’s train pass, so it adds those extra costs that you don’t necessarily even think about. It builds up, it really, really does. I mean, at 16 I wasn’t able to hold down a job. They never say it obviously, but you do believe that you get turned down for little Saturday jobs and stuff because of the condition, the impact it might have on their work and business. I mean, even today I’ve been turned down by an awful lot of jobs this year, so it means that my parents, literally I have no financial stability at all, they pay for everything, which is a massive drain.
EMMA- So, your benefits got cut and your parents lost their Carer’s Allowance for you. Did you or your parents appeal?
HOLLY- Yes. My mum was dealing with everything if I’m honest, because at 16 I was really, really unwell, was seizing, we were counting days, sometimes hours, we weren’t even on weeks yet between seizures. So, I wasn’t in a place mentally or physically to be doing stuff like this. But I know that we appealed and eventually I did get put on my PIP. It was tough, it was not fun. And then only last year they, you know when you have to renew things they do an assessment for you, they turned it down. They said no, you no longer meet the standards because you’re working, blah, blah, blah. And I’m still [laughs] waiting on the decision of the appeal.
EMMA- So, you’re waiting on a decision now. Are you getting benefits at the moment?
HOLLY- No. So, it’s one of those where we appealed it, the appeal failed, so we were advised to resubmit. So, literally I posted the letter two months or so ago and we’re still waiting on a decision. But my fear is, if I’m honest that, hopefully it will be backdated to when the appeal started, but you never know because it’s a completely new submission. It’s hard, it’s very hard.
EMMA- What is the way forward? What is the solution so that this doesn’t happen to other 16 year-olds do you think?
HOLLY- I think there needs to be a wider selection of options and answers within the actual form, as well as that you have to assess every condition in its own right. And I found when I was 16 and this time around that they try and put every condition in the same box, is what I’ve seen.
EMMA- So, a more bespoke way of figuring out what disability benefits someone needs. Joanna, let me bring you back in here, what have the government said?
JOANNA- We’ve put all of these kinds of concerns to the government. They’ve told us that there are going to be reforms to health and disability benefits and they will be set out within weeks. And they’ve also said that a DLA award as a child doesn’t mean automatic entitlement to PIP. They’ve said a young person can become more able to independently manage their condition as they grow older, meaning they’re no longer eligible for disability support. But they’re saying that their proposals for reform would provide children, young adults and their families with the kind of support they need, and then they finished by saying that they’re going to do this in a way that’s fair on the taxpayer, in a way that helps those that can work secure employment.
EMMA- Joanna Morris, thank you for crunching the numbers and doing that research, and Holly Crouch, thank you for telling me about your experiences of applying for Personal Independence Payment as a young person.
HOLLY- No worries.
JOANNA- Thank you.
MUSIC-
EMMA- Jonny Heaver was a contestant on the ѿý reality TV show The Apprentice until last week. The tutoring company owner who has a facial difference became the latest person to be fired from Lord Sugar’s boardroom, and he’s with me now for his exit interview, it’s Jonny Heaver. Hi Jonny.
JONNY- Hello. Thank you so much for having me, thanks Emma.
EMMA- So, describe The Apprentice for people who haven’t seen it.
JONNY- So, The Apprentice is a ѿý kind of reality competition show where 18 candidates battle it out to win Lord Sugar’s £250,000 investment. And you’re put through a series of trials and tribulations, and then one or two or more people leave each week, and then Lord Sugar invests in the person’s business who wins the process.
EMMA- You were one of the 18 this time. What was the experience like?
JONNY- Just absolutely wild. It’s just bigger than you could ever imagine, bigger in the fact that so many tens of thousands of people apply, hundreds of camera crew. It’s just an incredible massive experience of which I completely loved being a part of and felt very lucky to be a part of as well.
EMMA- Describe the final task which led to you getting fired?
JONNY- We were jetted off to Turkey, which is incredibly exciting, where we had to put on a corporate awayday for some very highbrow clients, they were Vodafone and they wanted us to put on a big corporate awayday for them and their highest performers in their team.
[Clip]
NARRATOR- Back in Bodrum [Turkish music playing].
ANISA- Chisola said 250 euros max, so if you can get down to that we’ll consider it.
NARRATOR- Weighing up whether to pay for pros…
ANISA- Wow!
NARRATOR- Anisa, Emma and Jonny.
ANISA- Wow! [Applause] That was amazing, thank you so much.
JONNY- So, what kind of price could you do for us?
FEMALE- They want 500.
JONNY- We were, kind of, thinking around about the 200 euros, so we were wondering if you could just come down any further?
FEMALE- 350 maybe.
JONNY- Um, if we were to, kind of, um, thinking could we maybe, we could maybe go up to 230. Do you think that would be okay?
FEMALE- No, I cannot.
NARRATOR- Team building costs slashed.
ANISA- Oh, it’s awkward.
NARRATOR- Dancers stood down.
[End of clip]
JONNY- I think some bits we did well but other bits we didn’t do very well. Unfortunately we got criticism that the tour part of our corporate awayday was quite boring, which I do agree with. But there was a limited amount that we could do. And then it was followed by a three course meal on a boat as well with some character building activities [laughs] from Fred.
EMMA- I mean, actually nobody really likes those sorts of awaydays, or lots of people don’t, so you had a difficult audience.
JONNY- Yeah. I feel like with me and my team in the real world I’d just take them out for a meal.
EMMA- You put yourself up for manager that day and you didn’t manage to get that, but then you were offered the sub team leader, and you didn’t take it.
JONNY- No.
EMMA- And that seems to have not looked well. Why did you not take it?
JONNY- Yeah, that’s a really good question. So, I put myself forward for project manager because I really thought I’d be good at leading the team. I’d have put myself on the corporate side, not the catering side, so I’d be involved in negotiating the pricing and obviously putting on the tour itself. But then obviously Chisola got voted. Fine, that’s completely fine. But where I did not think my skillset would be utilised is by being on the catering side because my expertise does not lie in the kitchen, and actually I felt it would be disingenuous to put myself forward for leading a part of the team where my skillsets don’t lie. And I stand by that decision.
EMMA- And you do have a facial difference. I’m blind actually so can you describe for me your facial difference, is that okay?
JONNY- Yeah. So, I was born with a giant CMN, it’s called for short, but like a melanocytic naevus covering half my face and head. It’s a big brown birthmark, and that’s what it was for me from birth. They do come in all shapes and sizes. It can be on your face, it can be on your body. So, obviously my parents had a really difficult time and had to make really difficult decisions in terms of whether to remove some of it or to leave it. But they decided to try and remove some of the CMN because there was a slight risk of it becoming malignant as well at that stage. So, they decided to get rid of some of it, which has left me with quite severe scarring as well. But that developed over the years into causing other problems, so I then had something called an ectropion, which is an eye droop, which caused a lot of pain and caused ingrowing eyelashes. So, I’ve had a lot of surgery since, not only to remove the CMN but to correct what went wrong with removing the CMN, if that makes sense.
EMMA- Oh gosh.
JONNY- So, yeah, I’ve had about 20, 25 operations since birth, so a lot of my life has been in hospital and out of hospital. But I do think that has made me more resilient, I 100% believe that, and it’s made me a good entrepreneur I think. So, I do feel I’ve got challenges, whether they were laid out on that task or not I don’t know, but definitely in the world of business for sure.
EMMA- That task it was out in the country, it was hot, did it make you feel a bit rubbish as well?
JONNY- I do cope with a lot of pain on everyday life, but I’m kind of used to it. Because I live with constant pain it does become like a constant variable you can get used to, and I’ve got used to navigating that. But no, I don’t think it massively held me back on the task per se. But I definitely do feel it’s made me more resilient as a character on the whole, because obviously, unlike some others I’ve got to – you know what it’s like as well I’m sure – but when you walk into a room it’s not, ‘Oh Jonny, nice to meet you, you look fine’ it’s, ‘Oh Jonny looks a bit different’ and you’ve to work harder to win over that person in the room.
EMMA- Tell me about looking different going through school?
JONNY- Occasionally I had a mean comment, but I’ve been really lucky in my life that I’ve actually never been bullied. I think the show is another one where that’s worked in my favour because of course I was ready and prepared and equipped for quite a lot of hate, because you know how harsh and rude people can be. But actually, of course if you search hard enough you’ll always find a hater, but actually the public have really got behind me. And I found that so refreshing and so incredibly heart-warming.
EMMA- And what about the other contestants?
JONNY- Yeah, they’ve all been great. It was actually Melica, a fellow candidate, who really encouraged me to speak up about it after the show, because I’ve always been a bit like, oh I don’t really want to speak about it hugely, because I think it’s that fine line between celebrating your differences but also drawing attention to it and maybe making more of a stigma of it than there has to be. I’ve always kind of been on the fence. But actually it was Melica who spoke to me on the show and said, ‘You should really celebrate it and speak about it after the show’, and I’m really grateful for the support she gave me on the show because if it wasn’t for her I probably might not be doing this now or even talking about it on TikTok or any of the things I have done. And I’m pleased it wasn’t addressed actually in boardroom one for example of the show, because what I’m also a big advocate for is actually facial differences shouldn’t be a barrier when going into new work, whether that’s The Apprentice or whether that’s actually just a normal job. It shouldn’t be something that’s immediately spoken about and quizzed upon in the first boardroom or the first day of work. But actually I’m really glad I did talk about it later in the process.
EMMA- So, what do you do when you’re not on reality television?
JONNY- [Laughs] I love my own business. Honestly, I live to work, but I do also have a social life as well. But my company is a tutoring company where we work with young people and help them equip their academic goals with, I guess, financial ethics being right at the centre of what we do. I’m really happy to say that I’ve got a team of 35 now and yeah, we’re going from strength to strength. And The Apprentice has definitely accelerated that growth as well so I’m very grateful.
EMMA- Oh, that’s really good. And is it secondary school or university?
JONNY- So, we do from three years old, learning to write and read, right up to 18 plus and adult education as well, but including GCSEs and A-levels, so we do everything.
EMMA- And is it all, like, high-achieving children from families who can afford it? Or do you find, like we hear about a lot more disabled people struggling to get school places, struggling to get the right school places, maybe some more people being home schooled, have you found the clientele changing?
JONNY- Well, it is a big mixture because obviously one-to-one tutoring does have that stigma and it is something that’s expensive. But what we’re very transparent about at Achiever is people do pay different prices. Sometimes we’ll take a cut from someone who can afford it and use the money we make from that to perhaps provide tutoring to a family who can’t. Financial ethics and accessibility is what makes Achiever different, and we really try and stay true to that.
EMMA- And what kinds of families would you support with a cheaper price tag?
JONNY- Every family’s different, but it could be someone whose child has got a disability. It could be a family who is a single parent with multiple children who don’t have that income or capacity to provide a lot of teaching for their own children so need a bit of extra support. It could be someone who is suffering with mental health and needs that extra boost outside of school. We work with a lot of students who actually realty struggle going in to school, and I think this is a huge pool of students who get forgotten by the system as well.
EMMA- Yeah, you did say when you were going into The Apprentice, you said, I want to prove that nice guys can win.
JONNY- Yes.
EMMA- And you’re not £250,000 richer, you were fired, but do you think you’ve proven that anyway?
JONNY- I hope so, I really do hope so. And obviously it is a reality show so there will be moments where it’s heated and there will be moments of heated discussion. But I do believe I stayed true to myself throughout all the episodes, and I didn’t do anything that I wouldn’t do in my own business in real life. And I do think I treated people well and with respect, and did prove that business doesn’t have to be as cutthroat as it’s sometimes perhaps portrayed on TV, and that the nice guy can go far. Maybe not win on this occasion [laughs], but that nice guy can definitely go far and do well in business.
EMMA- Well, you got to week 6 so it’s no mean feat. What’s next?
JONNY- What’s next? So, I’m still hugely committed to my business, and we’re looking for investment still, because it hasn’t come from Lord Sugar. We’re at a really exciting time for growth so very exciting.
EMMA- The Apprentice continues on ѿý One on Thursday nights at 9pm, and it’s also on iPlayer. Jonny Heaver, thank you so much for talking to me on Access All.
JONNY- Thank you so much for having me. It’s been a pleasure.
EMMA- That is about it for this episode. And actually to be honest I don’t usually call disabled people brave, we don’t like it, but wasn’t Jonny Heaver brave to put himself in that position in that boardroom? And what a great person to speak to. I learnt a lot about the inner workings of The Apprentice there as well. You can contact us, tell us what you think we should be talking about on accessall@bbc.co.uk. 0330 123 9480 is our WhatsApp number. And you can find us on social media, we’re @ѿýAccessAll on X and on Instagram. And, if you haven’t already done so, please do subscribe to Access All on ѿý Sounds. Hit that big button and you’ll get us on your device every single week. See you later. Bye.
[Trailer for Newscast]
CHRIS- You know when you’re worried about something, but then you talk to your friend who knows more about the subject than you do, and straightaway you start to feel better? That’s what we try and do every day on Newscast.
MALE- Now, they’re saying that that would be simple to do, it would give everyone certainty.
CHRIS- We talk to people who are in the news:
FEMALE- You were chasing me round with a plate of cheese.
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MALE- At least I didn’t get up and slap anybody.
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MALE- I think that he’s decided he’s going to listen, and then he might just intervene.
CHRIS- And we talk to the best ѿý journalists, asking the most important questions:
CHRIS- What’s wrong with chinos? You don’t want them, people to start wearing chinos?
FEMALE- Don’t start me, Chris.
CHRIS- That’s Newscast from ѿý News, the podcast that knows a lot of people who know a lot about the news.
FEMALE- And I was like, go on Kate, put some more welly into it!
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