To holiday or not: Can Direct Payments be used for short breaks?

 

13th February 2024

bbc.co.uk/accessall

Access All – episode 97

Presented by Emma Tracey

 

 

EMMA-           Hello Jem and Victoria. You’re going to be with me later talking about underwear. But now Jem has just told me that in her bag she’s got something that I might like to see.

JEM-                I have got something that I have made, some DIY [laughs], because it’s so difficult to get your own adaptive clothing I have to resort to making it myself. Now, this is what I call the wrap and roll. And what I’ve got in front of me is my old black duffel coat from 2008, I cut off the sleeves.

VICTORIA-     Nice.

JEM-                I sewed them back up – well actually my neighbour did – and then I can wrap it around my legs like this, and now you’ve got the wrap and roll that keeps my legs dry and warm and comfortable when I go out. But what is really great about this is it’s so easy to get on and so easy to get off. So, from just transferring into the car just whip it off, chuck it in the car, and off I go.

EMMA-           Is that all? Have you got anything else in your bag for me?

JEM-                A banana? [Laughter]

MUSIC-           Theme music.

EMMA-           Hello, it’s me, it’s Emma Tracey, your friendly Access All presenter, here to talk all things disability and mental health. Because apparently I’m slightly qualified for this, well at least for some of it, because I do have a special registration card in my wallet that says that I’m severely sight impaired. So, there you go.

                         Anyway, coming up on this episode: should you be entitled to a short break if you can pay for it with savings you’ve made from your Direct Payments? Nathan thinks so, and he’ll be telling me all about that. And there’s so much going on in the world of accessible fashion that we have invited not one, but two fashionistas into the studio. Woo-hoo. Sound fun? If so you can subscribe to us on BBC Sounds. And if you’ve caught us on 5 Live, hello, you can hit that subscribe button too, you know, so that you’ll never miss an episode. Right, on with the show.

                         I have a question for everybody now: is it your human right to go on holiday? Nathan Lee Davies thinks so. He’s from Wrexham in Wales, and he’d been saving some of his social care money, so that’s the money he’s given by the council to live independently, and he’s been saving it for his first holiday in 24 years. Nathan has Friedrich’s ataxia and that affects his coordination and his balance and his speech, and he has a limited life expectancy. So, he's keen to be in the here and now and do what he can. The council says that the money cannot be spent for flights and accommodation for the two PAs that Nathan would need to bring with him on holiday. They’ve also clawed back quite a lot of the money that he had saved for the holiday as well. Nathan is with us, and also Nathan’s friend, Chris. Hi Nathan, hi Chris.

NATHAN-       Hi there, Emma.

CHRIS-            Hi, Emma.

EMMA-           Tell me about the holiday that you wanted to go on. Where were you wanting to go and when?

NATHAN-       Well, first of all I would say that I don’t like to call it a holiday as such. It’s more of a short break, because a holiday sort of suggests that I’d be going on a jolly just because I want to. But really it’s a short break to have a bit of respite from the mundane reality of everyday life. I’ve gone through drama of divorce and I’ve been in and out of hospital with kidney stones; and I just planned a trip to Florida to help my mental and physical wellbeing needs that I think I deserve.

EMMA-           You were going with a specialist travel company, so you were going to get accessible places to stay, and you were going to go to Florida for six days.

NATHAN-       Yeah.

EMMA-           And how much would you have needed to save for that and how much would you needed to have spent on that?

NATHAN-       Well, it was £3,500 when I was first given the original quote. But because the council wouldn’t let me book it then when I was finally in a position to make the booking the costs had obviously risen, so now it’s £3,800.

EMMA-           And that money’s just for you to go on holiday?

NATHAN-       No, that included the PAs. I have never wanted my holiday to be paid for.

EMMA-           So, you’re paying for your part of the holiday out of your own money?

NATHAN-       Yeah.

EMMA-           Okay.

NATHAN-       But what I do object to is having to pay for the people that will be working to support me.

EMMA-           You’ve been told that you have to pay for their flights and accommodation. How have you managed to save so much of your direct payments up?

NATHAN-       It’s because of a failing with the care support plan, the care support plan should be through a series of wellbeing outcomes that ways in which I can spend my money maybe on trips to the cinema or things to help me engage in the local community. But it features absolutely zero wellbeing outcomes and it just feels like I’ve been short-changed by Wrexham Council.

EMMA-           Chris, your Nathan’s friend. Chris is going to give you a hand, isn’t he, to help you tell the story.

CHRIS-            The original care and support plan had three outcomes, and the third outcome was to use a hoist to carry Nathan out of his bed and put him onto his wheelchair. That was an outcome!

EMMA-           So, that should be a basic need instead of an outcome you think?

CHRIS-            Exactly.

EMMA-           The council has clawed back some of the money, haven’t they, Chris? You’ve seen all this happening. What did the council do?

CHRIS-            I’ve seen it with Nathan. And to be fair to Nathan, what has actually happened is you’d accumulated, as you say, this money. But that’s over a number of years, if you remember. We’ve also had COVID so it can take over a long time for it to slowly accumulate. But Nathan hasn’t then spent it unwisely. He’s reasonably saved it. And he does also provide quarterly accounts to the council, so they didn’t have a problem and they knew basically what money Nathan had.

EMMA-           So, what did the council do? They took an interest in the money and they took it back in an interesting way, didn’t they?

CHRIS-            Well, they have been sending Nathan letters asking for the money back. And they warned him if he didn’t pay the money back they would simply take the money in the months of October, November and – Happy Christmas – December. That he knew the money would restart in January, and he was forced obviously to live on what had been saved.

EMMA-           Nathan, what are you going to do now? Are you still going to get to go on holiday?

NATHAN-       Well, yeah I will have to ask my mum to pay. I just think it’s totally unfair to put me in this position where I’m having to ask my 75 year-old mother for some financial support.

EMMA-           I spoke to lawyer, Anne-Marie Irwin who specialises in human rights, including disability rights, and I started by asking her where the law stands on the level of underspend that Nathan had.

ANNE-MARIE-  A person should have flexibility about how they spend that money to meet their needs. And so in Nathan’s case it seems that that’s what he’s done, and he’s chosen to meet his needs in this particular way.

EMMA-           Wrexham Borough Council have clawed back quite a lot of the underspend. And obviously Nathan’s not particularly pleased about that because he wanted to go on holiday every year for the rest of his probably short life left. Could this end up in court?

ANNE-MARIE-  Potentially. There was a similar case in 2021 where Suffolk County Council unsuccessfully argued in a judicial review in a High Court that it wasn’t required any longer to meet the cost of supported holidays for two disabled brothers; and it had been doing that for several years prior to that. And in that case the Court of Appeal found that the local authority was ignoring a key element of the brothers’ needs and namely the ability to fund the means to access and take part in holidays. And so it really comes back to what is the assessment and care plan saying: does the person have a need in that area? And one of the things the local authority should be looking at is the need for somebody to engage in leisure activities, so that could of course include a holiday. The local authority is permitted to stop direct payments and to request a repayment, but only in circumstances where the person hasn’t been spending direct payments to meet the need. So, again it comes back to what is this person’s need, and allowing the person flexibility over how they choose to spend the money to meet the need.

EMMA-           The council say they will pay for the carer or the PA’s wages while Nathan’s on holiday in Florida, but not the flights and accommodation. And they’ve also said they’ll help him if he wants to source the PAs in Florida for his six-day holiday but they won’t pay flights and accommodation. So, that potentially could be argued not meeting the full need?

ANNE-MARIE-  On the face of it it seems to me that could be argued to be irrational, and public authorities have a duty to act rationally. Because how do Nathan’s needs get met once he’s out there if his carers can’t actually get out there to support him? I don’t know about what’s been proposed in terms of carers out in Florida, but presumably they will be carers who have no knowledge of Nathan, haven’t been able to meet his needs previously, haven’t met him. And of course that would have an impact on how his needs are met, and I’m sure Nathan wants carers who are familiar with him and care for him day to day.

EMMA-           We invited Wrexham County Borough Council on but they declined. However, they did tell us this:

COUNCIL-      The Council supports use of Direct Payments to meet the core assess needs of individuals. If an individual chooses not to use their social care funding on meeting their assessed needs then the policy in terms of clawback is clear that surplus funds are to be returned to the Council. All individual’s assessed needs are designed to support them to have their care needs met alongside social activities within the authority’s overall resources social activities. Mr Davies has confirmed that he has not engaged in the social activities that he receives Direct Payment funding for, which is a choice that he has every right to make.  

EMMA-           And specifically in regards to Nathan’s Florida trip they said:

COUNCIL-      The Council is willing to fund Mr Davies’ care whilst he is on holiday. He has also been offered options around sourcing care and support whilst in Florida.

EMMA-           Thank you so much to Nathan Lee Davies and to Chris as well for joining us.

CHRIS-            Thank you.

NATHAN-       Take care.

EMMA-           And thanks also to John Pring from the Disability News Service who highlighted this story. So, are holidays crucial for living a good, rounded, fulfilling life? Let us know. We’re BBC Access All on X, formerly known as Twitter. And it’s accessall@bbc.co.uk on the email.

[Clip]

CLAUDIA-      You are the last surviving players on The Traitors.

MOLLY-          I’ve kind of spent most of my life since I was 11 quite unwell. I kind of wanted to advocate for people with limb difference and a stoma. If I looked at myself three years ago I couldn’t even leave the house at points, so to now be here, like, running around with you guys is kind of crazy.

MALE-             With total strangers.

MOLLY-          Yeah [laughs].

[End of clip]

EMMA-           Gosh, Molly from The Traitors was great a couple of weeks ago, wasn’t she? An absolute standout moment for me was when she started talking about her stoma. Now, a stoma is when you get your colon removed and the waste needs to go somewhere, so a bit of your intestine is popped outside of your body and that’s where a bag goes to collect the waste. So, here’s a clip of Molly talking about her stoma, which she calls Sid by the way:

[Clip]

MOLLY-          He’s pretty well-behaved. Like, I can’t lie. Touch wood he’s been great. I change my bag kind of every three to four days, and I just empty it throughout the day normally when I go to the loo. And yeah, he doesn’t cause me many problems.

EMMA-           You’re quite proud of Sid.

MOLLY-          Yeah, I’m very proud of Sid. He’s helped me in many ways.

[End of clip]

EMMA-           We asked you on X if you name your stoma or other access stuff. And listeners, you did not disappoint. Paul’s stoma came into being, or was born as he says, which I think it pretty cute, when his large bowel was removed due to cancer. And he’s actually on TikTok now, he’s so excited about it, with his stoma. And the stoma is called Shrimp. And Paul took the time to send us a voice note, woo-hoo, about his stoma Shrimp, and about the bag he hangs on it to collect the waste:

PAUL-             After chemotherapy, radiotherapy treatments I went into hospital on 28th November 2022 where I had my large bowel removed, and Shrimp the stoma was born. I struggled to come to terms with cancer and indeed the operation. I considered not having the surgery, but after seeking counselling I decided to not only embrace my stoma but to use my experiences to help others. So, I joined TikTok as Shrimp the Stoma and Me, and together we show there’s life after cancer, and there’s a life worth living with a stoma. Shrimp not only saved my life, he gives me life. My bag isn’t a bag for life, it’s a bag for living.

EMMA-           Oh Paul, that is really, really lovely and a really great way to talk about a massive change in your life. I really, really love that. Sticking with giving stuff a name here’s Mandy:

MANDY-         Hi, I use a reclining wheelchair and it’s called the Mand Wagon. It was named by my friend Jennifer.

EMMA-           Now, Soup of the Day sent us a post on X about their crutches, which they call Thelma and Louise. I love this. Soup says, “I’m hoping one day that I can throw them both over a cliff. But it’s been five years now so it might be a lifelong friendship”. Oh, so well thought through. Thelma and Louise, amazing film about friendship where they…I’m not going to give you a spoiler, but there’s a clip involved. Anyway, really well thought through and it makes me want to watch that film again.

I absolutely love getting your messages. We want to hear you on Access All, we want to read your stuff, so if you name your access kit, your cane, your hearing aid, your walking frame, your prosthetic limb, we want to hear what it’s called and why and who named it as well. I like that. But if you’re not into naming your stuff – and I’m actually not, none of my canes have ever had names – I want to hear from you as well, my kindred spirits. Send me a voice note on 0330 123 9480. And if you can pop the word Access before your message then in the long list of BBC messages we will know that this one is for our Access All podcast. And if you don’t fancy sending a voice note do email us accessall@bbc.co.uk. And we’re on X @BBCAccessAll.

EMMA-             High street staple, Primark, have unleashed a new range of adaptive underwear. There are four pieces in the range, and it’s Primark’s first of this kind. The pieces have magnetic closures and soft, comfy fabric. The promotional campaign for this has been getting an awful lot of attention online. But does the fashion industry still have a long way to go to make adaptive clothing ready to wear and easily available in the shops? With me we’ve got Victoria Jenkins, the head honcho at Unhidden clothing, and you have designed clothing for Lucy and Yak, and you’ve even had your own range in London Fashion Week last year. And Jem Hubbard is an influencer – would we say?

JEM-                  Influencer, content creator.

EMMA-             Content creator. You’re known as WheelsNoHeels online, and lots of our listeners will have come across you reviewing various aspects of being a wheelchair user in the world. So, let’s go back to the adaptive underwear now and let’s start with you, Victoria. What was your initial reaction to Primark’s campaign and to the range itself?

VICTORIA-       The initial reaction was just finally, you know. The representation alone was wonderful. But I think it really marks a shift in high street retailers at least starting, albeit it slowly, but starting to consider and include adaptive options.

EMMA-             What we actually haven’t explained is what adaptive clothing is, Victoria.

VICTORIA-       For me I try and switch between adaptive and universal, because universal is what we should be aiming for, but there is a need for adaptive. So, adaptive is any kind of garment or clothing that is adapted to a specific disability. In some cases that might mean seated knickers or something really specific for a particular concern with dexterity issues or…

EMMA-             Seated knickers?

VICTORIA-       Yeah.

EMMA-             What’s the difference between seated knickers and, I don’t know, ambulatory knickers?

VICTORIA-       So, ideally they would be a bit longer in the back rise, so they would have a different shape to them. And where the seams are positioned would slightly change that back bit, and the front piece would need to be shifted. It all comes down to what condition you’re trying to choose. Whereas obviously I try and do universal design where I can because that means anyone can wear it; it’s not only for people with disabilities, it just has things built in for if you need them.

                          But I think also that helps new mums or new parents, or anyone who’s just broken a leg or someone who’s just had surgery, but it’s something they’re not going to have forever. The need for this is a lot bigger than just this community.

EMMA-             But Jem, the issue is you didn’t see this Primark underwear on the high street, did you?

JEM-                  Yes, I was really excited one day, I woke up – because I film an episode on my YouTube channel called Disability News – saw that Primark had launched this range. Headed very excitedly to my local branch, which was Brighton, went to look for the underwear and I couldn’t find it. I could find all shapes and sizes and little bits of string that they call underwear [laughs], but I couldn’t find the adaptive line. They said, “Oh maybe you could click-and-collect” so I thought okay, I’ll give them the benefit of the doubt, maybe I can click-and-collect. Went home. My nearest store for click-and-collect was Croydon, 40 miles away!

EMMA-             So, you’re probably not going to go 40 miles away for an £8 pair of knickers?

JEM-                  With a disability.

EMMA-             With a disability, yeah.

JEM-                  No chance.

EMMA-             So, why, Victoria, is it not available in all the stores do you think?

VICTORIA-       Obviously I’m a bit guessing in the dark, but I assume that because it is a new project that to just have it available in every single store across, you know, they’ve got something like 330 stores globally, to make that much product when they’ve never done it before I think they just didn’t want to overproduce. So, they’re trying to be a bit more sort of ethical and sustainable.

EMMA-             And what’s the price of the Primark range? And what would the price be if it was a specialist adaptive company?

VICTORIA-       Well, that’s the thing. And I do really feel for these small independent brands, not unlike my own, that have been trying to do this, and it obviously costs us more because we don’t have that kind of resource behind us. But yeah, I think the fact that it’s more affordable obviously makes it so much better for this community. We all know that we’re more likely to live below the poverty line, like 50% of us do, so I think it’s really important. And obviously higher end or just sustainable, if we talk about sustainable brands as well that are in this space, they are like £50 to £70; £8 just massively makes it easier for everybody.

EMMA-             And Jem have you used adaptive underwear brands before? And how has your experience been?

JEM-                  I haven’t had as much experience with adaptive underwear as I would potentially like, mainly because of the availability and the cost. I have tried some adaptive period underwear, which were really nice, really soft. But the clasps actually were surprisingly fiddly.

EMMA-             Oh no!

JEM-                  Yeah [laughs]. You know, there’s that line with trying to make them adaptive and user-friendly for everybody who may have dexterity issues. I think that’s where it can become quite tricky.

EMMA-             It sounds like you can feel the pain of someone trying to get a range like this off the ground, because your business has a very specific demographic.

VICTORIA-       Yes.

EMMA-             So, will this range from Primark, do you think, be a success?

VICTORIA-       Yeah, I really do think this is a step in the right direction. There just needs to be more. They need to be in all the stores [laughs]. And I think it’s again a piece about communicating with this community. I think the fear is always that they’ve never worked with this community in this way before so it’s completely new territory for them. So, I think there needs to be a little bit of grace given especially, because it not like any other high street stores are doing, so I’m sure there’s a tiny bit of they’re trying. I’m sure they’ll make mistakes. I’ve made mistakes and I will continue to make mistakes. It’s just a question of hoping to see more and hoping that they can expand it.

EMMA-             One of the things about Primark’s range is they had disabled models modelling the bras and knickers involved. And we got in touch with them to find out what their experience was like, and here’s what they had to say:

GLEN-               My name is Glen, or Glen the Great. I have Amniotic Band Syndrome, so I’m missing fingers on my left hand and I wear artificial limbs on both my legs. This was an amazing campaign for me to be in as I only have one hand, so the adaptive underwear range is absolutely brilliant for me. But I’m really pleased that we’re finally on the high street. Whoop-whoop! We need more and more campaigns which promote disability and inclusion, and this is just the beginning of the beginning and I really cannot wait to see what lies ahead.

EMMA LIONS- Hey, I’m Emma Lions and I have a condition called Charcot Marie Tooth which is a neuromuscular condition. For me it means that I am a full-time wheelchair user and have limited dexterity in my hands. This range is literally history making. I do think that underwear is a great place to start as it’s like the base of any outfit. And how empowering it is if you haven’t been able to put on your own bra for so long to now being able to have that freedom and independence to do that.

TIA-                   Hi, my name is Tia and I have cerebral palsy. And I am incredibly grateful because I’m not a model but I’m so lucky to have been asked to do this shoot. And I really enjoyed it because it’s really liberating. And I’m so happy that they are putting adaptive underwear and clothing in mainstream brands, because this is something that needs to be promoted more.

EMMA-             It was so nice to hear from the models, and they’re so enthusiastic as well. Here’s one for you: do men need adaptive underwear?

JEM-                  I believe so.

VICTORIA-       Yes, they absolutely do.

JEM-                  Yeah, yeah. You know, if you’re a male presenting wheelchair user you are still going to have the same difficulties putting on underwear.

EMMA-             That sounds so obvious, but a lot of it is about bras, isn’t it though, because that seems to the tricky thing, and bra fitting for some people.

JEM-                  Yeah, well bras are tricky I think even if you don’t have a disability. Who came up with the idea of putting them around the back anyway?

VICTORIA-       I know. That’s got to have been a male decision because it’s definitely I don’t know a single woman who wouldn’t prefer front fastening generally to be the standard.

JEM-                  That could be a universal change.

VICTORIA-       Yeah.

EMMA-             Front fastening between the boobs?

JEM-                  Yeah.

VICTORIA-       Which does exist, but it’s usually advertised like really saucy. Now, I’ve seen it in films where they sort of undo it, and it’s all from the front, and you’re like, okay, that’s also just helpful [laughter].

EMMA-             Yeah.

VICTORIA-       Not just sexy [laughter].

EMMA-             As important for it to be easy to put on as it is for it to be easy to take off, right?

VICTORIA-       Yes, exactly.

JEM-                  For every eventuality.

EMMA-             So, we reached out to Primark and we asked them a few questions. And one of the questions we asked was why people are struggling to get this underwear in their stores:

HEIDI-               Hi, my name’s Heidi Williams de Rincon, and I’m the head of buying here at Primark. When we introduce any new range at Primark we’ll often launch it just through a few selected stores to help us understand the customer demand and the response to the product range. This is a very unique and new type of product for us, and we want to ensure that the inclusive design features that we’re applying are exactly what our customers want and are looking for. And these learnings will help us to understand how we might scale our offering in the future.

JEM-                  They have done as much as they could, you know, including disability advocates, consultants, models. I just feel it’s just this last hurdle that they have slight stumbled across. But what Primark have done is amazing, and that definitely needs to be celebrated.

EMMA-             Is there anything else you’d like to see from adaptive underwear, ladies?

VICTORIA-       I’d like to see them do men’s, I think that’s also important, you know, not to be forgotten.  I mean, menswear is already really hard to find across the board if you’re non-disabled and disabled, so that needs to be brought in hopefully soon.

JEM-                  Maybe gender neutral type as well.

VICTORIA-       Yes, definitely.

EMMA-             So, how would we make men’s adaptive underwear happen? And would there be any difference now in the way that would be designed and produced than with women’s? Obviously there’s the comfy fabric, there’s the fastenings; is there anything else they need to take into account?

VICTORIA-       Yes, access tubes for catheters, which I think also needs to be included in the women’s, but as well as for men’s. So, yeah, openings for catheters; different ways of getting in and out of them; the fabric consideration.

EMMA-             Underwear that’s gentle on your bits when you’re sitting down basically?

VICTORIA-       Yes. And I think also it needs to be different shapes. It can’t just be, like for when we have thongs, French, Brazilian and all these things, you’d need to do it in briefs, you’d need to do it in shorts, and you’d need to do it in different lengths of shorts depending on what that person needs and what they ask for. And there’s also people with prosthetic legs, they’re not going to want to have shorts either, so that’s why you need to have the brief as well.

EMMA-             Victoria Jenkins and Jem Hubbard thank you so much for coming in and chatting to me all about adaptive underwear.

VICTORIA-       Thank you for having me.

JEM-                  Thank you.

EMMA-             That’s your lot for this week folks. I would love to know your thoughts on Nathan’s need for a short break in Florida. And also I’d love to hear about all your fashion finds and fashion hacks as well. We love a voice note here at Access All Towers. Please record and hit send to 0330 123 9480, starting your message by writing the words Access All. If texting isn’t your thing you can email us, it’s accessall@bbc.co.uk, or find us on X @BBCAccessAll. 

FEMALE-          The time for talk is over.

EMMA-             That was just too good not to use again. Ciao.

[Trailer for Newscast]

MALE-              Newscast is the unscripted chat behind the headlines.

FEMALE-          It’s informed but informal.

MALE-              We pick the day’s top stories and we find experts who can really dig into them.

MALE-              We use our colleagues in the newsroom and our contacts.

MALE-              Some people pick up the phone rather faster than others.

CALLER-          Hello?

FEMALE-          We sometimes literally run around the BBC building to grab the very best guests.

MALE-              Join us for daily news chat.

FEMALE-          To get you ready for today’s conversations.

MALE-              Newscast, listen on BBC Sounds.