"We wouldn't be able to survive": A Carer's Fear Over Proposed Benefit Reforms

So can I get you to introduce yourself and let and tell me a little bit about yourself? Hi, my name's Jackie Darlington. Um, I'm a Single mom of an adult son with learning. Disabilities, autism, Down syndrome, and um. No speech

Um, thank you, Jackie for sharing that. Um, if you were gonna describe what you do to somebody, what, how would you describe what you do in the world? I have great difficulty doing. Describing this and saying what I do, and I think that's because I do so much, so many different things

Um, First of all, I'm a carer to my son. I am then seen as an advocate. For carers and those with learning disability

Um, I'm also one for making sure That the authorities. Especially my local authorities are following the guidelines. So, um, Depending what hat I'm wearing, depends on how I approach these

Situations Just breathe and relax into the moment. Um, so can I ask you, how do disabled people feel about the proposed benefit reforms? They're dreading it They are So confused. Um, Many of them are on Pip

Not many, majority of the ones I know are on pay. And Their understanding of it is limited. Um, as to what side of PIP is affected and

Things like that, or may be affected, um. There's the also the other side of things where They don't know what they're on. They just know that they, the money's affected

You've got those on ESA. Which are now gonna be moved over onto Universal Credit or whatever it's called. Cold, um

And it's just a total nightmare because they've not prepared the community for. Any of these changes, they've not put anything in easy read, as far as I know, they might have done now, but they didn't do. And even if they put them in easy read

A lot of our People with disabilities still need help understanding the easy read. So it's really a confusing time for them. And their carers as well

We'll come to that in a second, so are there any concerns or hopes that people have as a result of these proposed changes? I think most of them are hoping that they don't lose money. Um, They're hoping that there's no change because. Those that I'm dealing with and coming across with coming across are mainly those with autism and learning disability, and change is difficult for them

So they can't understand. How They're gonna make their money. Stretch any further

And that's no different, really, to the rest of the world, or the rest of the country. We're all trying to make our money stretch further, but we understand, we may not agree with it, but we understand the cuts and could cut our cloth accordingly. Those with disability cards

So you're saying that those with disabilities and long-term health conditions. Can't reduce their spending anymore, but, you know, yeah. What impact is it having on you as a carer? As a carer, I'm having to

Think about areas that I may be able to reduce. Um, I'm looking at the fact that. My son loves going shopping on his own, even if it's just buying lunch

And I've started to cut back and say you can't go this week, but you can go next week. So that when it, when, because I don't think it's a if, I think it's a matter of when it happens. I can then say to him, you can't go, and he'll accept that

Um, You know, it's just a difficult time on whole really and I mean and worrying about it is causing, Mole stress. And more anxiety. In everybody concerned

What do you think needs to happen, so if you were gonna create a system and a process that works for disabled people, what would that be? Um, I think that's quite hard to say because as much as we all believe that one size does not fit all, we need a, A straightforward system that everybody can understand. And everybody, you know, if you're missing an arm, you get 1000 pounds. If you're missing a nose, you get, you get X

If you're missing this, you get X. If you can't do this, you get this amount of money. And it might be more straightforward that way

With The ability to, to make changes when people are um more complex. You know, I hate that word complex when people need to know. So do you think, but do you think that will create an unfair system for some people, particularly those with fluctuating conditions? It might do, but that's why I said, you know

There's got to be an ability to look at the different needs, and I use the word complex in, you know, but look at the different needs, then, of individuals that don't fit into any of those areas that you can get the funding for. Mm. And when we say funding, we really mean welfare benefits

Yes. What? Impact would the loss of benefits have to you and your family? Um, We wouldn't be able to survive. Simple, we would not be able to survive

Um, You know, There's just no way you can do your shopping. Yeah, uh I'm paying 3 times as much for food. Than I was paying the beginning, this time last year

Mm. So how on earth? Can we survive We're buying the bare minimum. Um, There was a time, the amount of money I would spend now would fill the cupboards, and I'm looking thinking, where do I put this? Got no space in the cupboards

Now it's, oh, there's space in the cupboards. You know, it's just not buying the same amount anymore. And how do you, if you, you, as a parent, as someone that knows about all of these opportunities to get it right, what, what, how would you think we should approach the reform of the welfare, um, yeah, the welfare reforms? I think the welfare reform is gonna be really a difficult one

Because you're gonna have to change something that's been in situ for a long time. And they have changed to do various things over various time. Um, and it's just not worked

I, I think it's going to be. Um, I don't know. I'll be honest with you, I don't know

And you wouldn't like to be in their shoes doing it, but I do feel they need to include those who are receiving. Welfare benefits. In the Um, not just decision making, but in their conversations

Mm. Do you think if tomorrow your son's benefit came to an end, there would be a a job for him out there in the big wide world? No. No There'll be nothing at all

The nearest is coming to. Working is being part of a CIC organisation. Where all the profits get ploughed back into the business, and any surplus gets divided amongst those that work there

And that's the nearest he he can get. He cannot concentrate for any length of time. With unless someone is keeping him on task

Um Yeah. And how would, how do you think this is gonna affect you personally as a mum? I think it's gonna be soul destroying because all the things that he can do because of the benefits, what the benefits allow him to do, it's gonna take us right back. Down to where he was stuck at home, and he wasn't doing anything, you know, he won't be able, the, I started a group because I was, Disappointed with the system

That didn't provide for those over 25 years old to do anything in the evenings. So, you know, I formed an organisation, but the numbers are dwindling and they're dwindling because people cannot afford. To be doing leisure activities, which is what the organisation is seen as

Where it is It, it does cover the leisure, but it also covers the social, it covers the. Um, Finances. Um, and take turn taking and, you know, it covers daily life

But if the funding goes. People are not going to attend organisations like that. And those sorts of organisations will have to close

I've seen so many carers centre to close down because. Uh, they've not got the funding. Hm

So you, what you're saying to me is that already as a family, you, you, the money that you're receiving around benefits doesn't go far enough and you're doing the basics. And then the stuff that could enable you to have a good life, if that goes, then it has a knock-on effect to the charities and all the places that. Yeah, sounds difficult

Yeah. It is and it's, sorry, it is and it's um it's frightening as well. Because It's a life that you're, you've never

Experience before. You know, when you, when I was growing up and things might have been rough, you know, I know things were rough for my parents. But they never let it show

And you got the best that you could get. You know, um, you know, if I wanted anything, then I'd say, oh, not this week, but let's see how much money we can get next week. So you always got it worded in a way that you knew you were gonna get it, but you just didn't know when

I don't know if I will be able to do that. Mhm. I can't promise something when there's just no money coming in

Mm. And what impact do you think this will have on your wider family? I think um the wider family may have to substitute some of the some of the things I'm not able to provide myself. Um, but they too are going to have issues, you know, they may not be affected by the benefit cut because they

They are actually going out to work. Well, as things are getting more expensive, they too are going to have financial issues. Um, And they won't be able to substitute what I've lost on a long-term basis

You know, they may be able to give me a tin of beans today and a loaf of bread, but they might not be able to do that every week. And I know I'm being very basic when I say that. Cos most people can give you a loaf of bread and a tin of beans, you know, that's been as basic as it comes, but

You need more than one loaf of bread and a tin of beans to last the whole week. Mhm. So yeah, it's gonna be difficult

And is it more expensive to be a disabled person? Do you find you spend a lot more money being uh you know, supporting your disabled son, having a disability yourself? I think it is, yeah, it definitely is. Um. You know, having a dis, like you said, um, which I've not mentioned prior, having a disability myself, I am forking out a lot more

On equipment, which, yes, I could wait to local authority or OT. To give it to me. But that waiting list is unbelievable, and I need it now, not, not 3 months' time

And. My son, the same, you know, he, he's, he's not gonna be able to, um, Understand that he can't. Have his communication aid for another 3 months

You know, he uses his iPhone, he uses his iPads. And a communication, communication aid. And he literally interchanges between them, depending on who he's speaking to

Yeah. And now, going back to when we first started the conversation, you said you're very connected and you do a lot about. The like the rights of disabled people and carers, how beyond your family do people and your son and you, how do people generally feel, disabled people about the proposed welfare reform? Are there any concerns, are there any hopes for it? I think the hopes that's there is that it's going to improve

And they want to, they want to believe that things are going to improve. Um, But the, the gut feeling is um. Based on what we already know

I, you know, those that are on. Um, PIP are going to be affected. The the motability side, uh, is not, because just imagine if they took that side away, people would be housebound

They wouldn't be able to get out of the house at all, that, you know, and things like that. So they've, they've taken it away on the other side, which means that people are gonna be left in their homes. Without someone coming to to get them

Or get them dressed or washed and deal and deal with the personal care side of things. And then that pushes pressure on The care agencies. On the local authority to provide that, so it's taken away from one

To put pressure on the other. Mm, interesting, and I wonder about that sense of feeling that people have. So in the conversations you're having are people, you, you said people, it did take me back, people are scared and frightened

Yeah, because they're just. You know, we can't, none of us can for um forecast what tomorrow's gonna bring. But knowing that this that that something's coming

It's filling them with dread. You know, um, they know they're gonna be cuts. And they're already panicking

Um, during COVID, there was, there was this thing about you can't get toilet paper and everybody ran out and bought toilet paper and stocked up, then nobody could get toilet paper. But the fact is we can't even run out and buy. The extra things we need, because we haven't got the money in the first place

So when there is no money. What is going to happen then? It feels sometimes I'll be going backwards in. In years then forwards

You know where um you won't be able to afford a washing machine, you're gonna go back to washing by hand. You won't be able to afford. Um, heating, so you go back to using

Paraffin eaters, you know, and that's what I'm thinking in my head. It's gonna go backwards rather than forwards. So if your washing machine broke down tomorrow, would you be able to afford to replace it? Not unless I got it on credit

And how am I gonna pay the credit? You know, I know my washing machine's on the way out. Because Joshua's already broken it and we've managed to fix, uh, temporarily fix it, um. And I've, you know, and it's a matter of taking away his of independence because he's putting things in the washing machine

But leaving um things like with a drawstring, the drawstring is left hanging out. So the seals, there's no seal on the washing machine, so. It's dripping, and then you've got clothes spinning round and knotting up because you've got one drawstring hanging out

To the point where this. A wire spring thing that holds the rubber in place has gone. But the thing is, we can't get it back on, unless I call an engineer out to get it back on

Now to call an engineer out. That's extra money. So at the moment we are washing and praying, or praying and washing, I'm not sure which way round you want to put that

And if you had a magic wand and you could change. The approach, what, what would your, what would you, what would your, what would you do? The approach to the welfare or to welfare reform, yeah. I think it would have been

Better. To uh. And I don't know whether they did, did this or not, but to have people around the table discussing the pros and cons of, The cooks I think also it would be better when they announced it to then also have dates in as to

How they can, where people can dates, where people can have webinars. On how they can go about doing things and how it's really gonna affect them. All we've been told is that you need 4 points in, Any one of these 3 or 4 categories

That's all we've been told. And some people like myself will only have 1 point or 2 points. In any of the categories

So it, it doesn't leave you feeling. Hopeful. Mm

Is there anything you want to ask me? Um, I think I would like to know if you are in the position to tell me whether I, I know I'm not the only person feeling this. I know that because I've spoken to many other people. But have you got any other people coming to you and saying, How they feel or they might feel opposite to me, I mean, in which case, why do they feel opposite to me? Yeah, so most, so I've had a lot, a lot of people reach out who feel concerned

And some of the questions I talked about were hope as well. And I'm not getting any sense that people understand if things will be better or if there's any hope. So we're collecting these stories just to ensure that we're not losing sight of what some of the challenges people are talking about

So people feel. Um, concerned, um, feel it's really hopeless, and they don't necessarily know what it all means, and it's not really been communicated in the right way to them. So we're hoping this will make a difference in, in trying to get some of those answers

OK. So basically they're feeling the same way, but by you collecting the stories. And presenting them to whoever it is

We'll get some decent clear. Yeah. Answers

Well, even just having the stories out there is important and. We will work together to think about who do we share these messages with to make it better for people like Josh and yourself. When we had our debrief meeting and you told me there's many more layers to a briefing meeting, you said there were many more layers to it

It's not just your son, it's impacts you as a person now needing care. It will impact your wider family and, and then there's that confusion of like, if you can't afford the basics now, how do you. Afford the basics when you have no money

Mm. Yeah. Yeah

OK, thank you, Jackie. I well I haven't got any more questions for you. You've got any for me? No, no, that's, that's all I've got, thank you, thank you

Well, I'll stop the recording there..