Session One: National Disability Strategy 

“I’m dyslexic so it took me a very, very long time and there was a very, very, very long audio version of it. It wasn’t a strategy; it was just a selection of comments in my opinion. It didn’t really set out how they would approach any issues, it was just “Oh, in this area, we’ll do this”. That’s not a strategy. I’m even more annoyed that it’s potentially illegal now, because that was a load of hours that I won’t get back in my working week, could’ve been doing something more useful! But it wasn’t consulted and actually the way they went about consulting with people in and of itself was in parts quite offensive. I think one of the questions was “Would you have sex with a disabled person?”, in the consultation, just completely the wrong approach. And a document that wasn’t really worth the paper it was written on.”

“I’ve not read the report, but I have read lots of the stuff that the Tories have put out over the last 13 years and like it’s always a mixture. Some of it’s very well presented and they’ve got some good ideas and good concepts in there, but the problem is they say one thing on paper and they do another thing in actual life. Brexit was supposed to deliver so many amazing things and never really did and I think it’s just like that across all departments, especially with disability. But I think in particular disabled people have had it really, really bad under this government.“

“When we read the strategy, one of the big things that jumped out transport-wise was that the Government said that they’re going to do access audits – and put money into doing access audits – of all the train stations. Well I thought under the law that exists already, that was a duty. I just cannot understand how it’s suddenly become a duty when it’s been all the way along, it just seems relly strange. We certainly had our rail station send through plans for what it was going to do. It didn’t include us in the plans of what was going to be done, they just sent the plans through and said “Oh, by the way, we want your reaction by tomorrow.” Well, we wanted to use a proper access auditor that we work with on a regular basis. These plans are very technical. They said things like “Well we can’t fit in one of the disabled parking spaces, is it alright if we do a half-size one?”. No! No, it’s just not. And all of these things seem like an afterthought.

It’s that involvement, all the way through planning, and compensating for your time. It seems like disability is always something that’s like “Oh, it’s a little bit of an add-on and it doesn’t have any financial value to it. We’re going to get in consultants for everything else, but your opinion as the local DPO? No, you’ll give it to us for free.” It’s really annoying and I think we could do a lot better.”

“The strategy for me, and I think we’re in a safe space, it really isn’t worth the paper it’s written on. It’s not progressive enough, it’s not inclusive enough, it is for me a complete tick box exercise to show that they’ve done one. But they were doing the White Paper for social care in 2015 and we’re still at that point seven years later, that we don’t have a robust social care system. So disabled people have been completely ignored for the last 12 years of this current government, well the government of the Conservative Party. Why would we trust anything they’re putting down on paper now?

My thought around disabled people and access, which you were talking about before Tan, around taxis and everything, disabled people have been totally, totally ignored throughout the last two years of Covid and so why would anything change? And I don’t want to sound cynical because I’m a glass half full kind of person, but I’m completely exhausted with the false promises and on the ground, we know what’s going on in our communities, but nobody’s talking to us about that and just coming to us and saying, “Can you consult on the future high street of St Neots?”. Well no, because you’re not paying me to do it, so why would I do it? So I am a little bit cynical and I would like to be proven wrong, but I just have no faith that any of these points or things that they say they’re going to do will actually be delivered.”

“I would rather have a smaller set of promises that are deliverable. One of the things that I have been really cross about is benefits, the fact that during the pandemic Universal Credit, quite rightly there was a £20 uplift and that should have remained. But people on disability benefits got nothing. And actually the cost to them of the pandemic was greater, statistically, than people on Universal Credit. So I’d like Labour to pledge that they would really look at the entitlement of people with disabilities in terms of benefits. But also the process of going and applying for benefits.  

We support people filling in the forms and it’s traumatic, it is a horrible experience and then you’re met with a medical assessor and their job is not to process that, their job is to stop that. So really have a root and branch look at the benefits system in its entirety, please and make it more fair and more equitable. And that’s what I personally would like from a Labour government.”

“One thing I’d like to bring up is, I use buses quite a lot because I’m in Norwich, in the city, so it’s not a great service but there is a bus service. There is a train station but that’s obviously just for travelling to other parts of the country. So I do use the buses a lot but it’s all one company, their standards are pretty poor, the buses are really old. What I’d like to see, I put up with a lot because I’m stubborn, I don’t drive, I’m not going to get taxis everywhere because that doesn’t work for me, especially in the daytime so I do use buses, but oh goodness. It struck me today, I was out briefly, and I got one particular bus, and do you know it was so pleasant, the bus was quite new, the driver was really good, the ramp thing you get off…  

But sadly, that’s unusual, but it shouldn’t be. The drivers are rude, they’re obnoxious a lot of the time, they won’t lower the ramp things down. I used to use just a walking stick and that was bad enough, but now my mobility’s got worse so I’m using a walker, so obviously that takes up a little bit of…and the hassle of getting that on and having that on the bus. What I do every so often, I’ve contacted the company and said, “Do you have any disability training for your drivers?” and every time I’m told the same thing, “Oh yes, we do, we do have disability training for the drivers.” But one, where’s the proof of this? Because I don’t see much evidence of this, and they’re telling me “yes we do” but how do I know that? So shouldn’t there be a better way of doing that? Should someone be able to see their training? The county council work with them? What is this training and why is it not working? It’s like taking your life in your hands.  

I kind of push ahead because I’m just like that, but it is actually…sometimes you just feel traumatised after and your mental health goes down, you feel like really… Sometimes when I’m getting off the bus, they’re not near enough the curb so someone ends up trying to help me so I’m half flinging the walker, bit dangerous, and then I hear the mechanism, the driver, he’s then lowering the bus but then I’m halfway off by then! And that’s a regular occurrence. So I just wonder whether something could be done around that to make the council or whoever work with the bus companies and say “Where is your evidence? What are you actually doing to improve things?”. 

“Just on a practical point, I think the problem is that the users and runners of transport very rarely seem to be brought together on a practical basis. I feel the one thing we do have on our side is the trade unions, because obviously the drivers are part of a union. But I think if we met on a regular basis through forum things might get better. So one of my suggestions is that we create clear local guidelines and support networks with taxi companies, because a lot of people who drive taxis are also in trade unions, so we need to have more forums that are interactive and together we’ll try and come up with solutions.  

The other things is having a long-term consultation plan for each disabled individual for needs-led assessment, so I think each individual could have a needs-led assessment every year, so what do they need and when do they need it, and we can work to get those solutions. Obviously, the other point is social care, and I think we need to start inclusivity from nursery age for popular kids to take disabled kids under their wing. I’m not saying that we need to force friendships, but the popular kids do need to be the ones who mentor the disabled kids to go and make their own friendships so they’ve got someone who’s a bit of a figurehead in the class to say, “This I how I’ve made friends, this is how you could make friends.” I think if they could have those mentorships from a young age, that could create inclusivity.  

And I think when it comes to social care, the companionship side of social care should be a last resort, because I feel social care should be about trying to make friends for that person, trying to help them to move forward. And I know it’s a mixture of both, because I think at times you do try to move someone forward and for one reason or another they just can’t integrate into a community because they might have complex needs. I’m coming across now more often that people are using their personal assistants as more companions rather than actually to help them integrate into society. We do need a lot of stuff to highlight on that.  

And also, one thing I’ve found useful is that we need families of experience who’ve done good interventions in the past. One of my friends was sectioned about four years ago but now he’s gone back to university, because of brilliant work that his mum did. And I think there are people like that across the country that don’t see an end in sight for their child if they’re in a similar situation. So people who’ve got that kind of background can be in a mentoring relationship with those kinds of parents, because I think there’s a lot of struggles out there and we need to bring those kinds of links together.  

And finally on benefits, I feel that a lot of attention gets put onto benefits so I’m happy to refer to the Commission on Social Security. However, the disabled haven’t had the right financial support under the Tories. I feel that a lot of attention has been put on the pay of social security, but not on the conditions. Looking at the jobcentres, what are they doing to help disabled people? Looking at private providers, what are they really doing? To me they’re doing very little, just getting a wage and pushing us through the system. That’s not really giving us much benefit.”

“My first point is the amount of responsibility put on the individual when stuff goes wrong with our transport system. We had a gentleman in Norfolk who received from his taxi company on his automated text, he was referred to as “Mr Wheelchair”. And the only way he could actually get this addressed was by taking them to court himself. He got some help with that from some human rights commission, but he had to do that himself, the council didn’t step in and say “That’s not good enough, we’re taking your licence away” or anything like that. We hear stories about that a lot.  

The other one, is we employ a lot of disabled people and traditionally a lot of our staff had mobility vehicles. Over the last 10 years, due to the changes in benefits that are supposedly put in place to encourage people to go out and get work, that has resulted in lots of people who were entitled to mobility vehicles now not being entitled, which has had the knock-on effect of some of those people saying “I can’t afford to work anymore because the only way I can afford to work is by having an adapted vehicle.” It just feels like overall there is absolutely no coherent…it’s something like 80% of disabled people who want to work, you haven’t got to encourage people to work, but you have got to give them the opportunities to do that. There’s a whole lot of building blocks that need to be put in place. And the benefits systems is one, but actually the mobility scheme was an incredibly useful and supportive scheme and has really been restricted.”

“Bring back equality impact assessments as statutory duty, not just due regard to. It needs to be done. People are looking at making city centres pedestrian only with absolutely no regard to how disabled people would do it. They’re looking at shared pavements, shared walkways which again can be an absolute nightmare. Involve disabled people is the bottom line, all the time, in all the decision-making and in the training. I wouldn’t give it back to the county council to see if it’s ok, give it to a DPO. I think you’d get a very different reaction.”

“Train services, that’s a great difficulty because I’ve used them, l had to travel up to Yorkshire last year. It’s ridiculous things again, I arranged all the assistance and everything, I didn’t go to one station because there’s no way of taking my walker because it’s only accessible on one side. I travelled to a different town only to be told the train are accessible, but the ramps they had didn’t fit those trains. There was a big mess up trying to get me off the train and my bag, which had all my medication and my stuff in it, went down the side of the train. It was horrendous. This was 2021!”

Session two: Social Care

“I went to a presentation this morning from our local council who’ve just taken on some new consultants and they’re going to be paying them £5.5 million over the next three years to save them £50 million from the social care budget. I suppose the thing I have about independent living at this point is a real sense, every time councils talk about it, of déjà vu. That every five years they have a new brainwave of how they’re going to bring in independent living, it’s going to save everybody loads, make everyone’s lives better and they don’t change anything. My view now is councils can’t run this. We see so many councils across the country who can’t run it.  

Here we’ve had a Conservative council and we’ve had a rainbow council, and neither of them could run it, it wasn’t good under either of them. And it just feels like it’s so important and it has such a huge effect on people’s lives that it’s too big for local politicians to have their hands over. And it leads to such a huge postcode lottery, so people have completely different experiences in every county. It’s madness, if you have a PA on this side of the border, they’re paid £1 less than they are on the other side. The whole system is so based on how good it is in that area and it just doesn’t seem to change, they just don’t seem to improve or actually make real change.”

“For me I think it’s a national care service. Having it national and very much based on individuals’ rights to receive and those being very clear. The other issue with county councils is there is essentially no accountability for councils, they can do wrong and the only thing you can do is take them to court. And people don’t. I was really surprised even ombudsmen’s rulings they don’t actually have to follow. They can ignore them.”

“I completely agree, especially with the home placements into sheltered accommodation or full-time care.

I think you also have to be really careful on the phraseology, because I know a lot of councils will look at independent living as “Let’s let people get on with it themselves”, whereas supported living is putting in the support services so that people can live independently, and I think there’s a real mix up between those words. And the packages, we see them over and over and over again, from the needs assessment, it’s just washed, dressed and fed. And that’s it. Not quality of life, no looking at transport and going out, no looking at anything. It’s three or four half an hour visits and that’s your lot. And it’s not a life.”

“I think if we get the education system right and family feel like they have  choice in the best education or their children, you start to engage the families and you develop really positive relationships with them, instead of people feeling like they’re having things done to them all the time.

I’ve worked in social care, and I’ve worked with some amazing social workers, and I think I’d like a Labour government to try and remove the demonisation of people that work in social care, especially social workers because they do a tremendous job. And carers do a tremendous job, and unpaid family carers also. I’d like greater emphasis to be put on the care sector as a whole and those portions of it to be recognised independently and celebrated for the contribution that they do make. So that’s what I’d like a Labour government to do.”

“I agree with those three points, but I’m going to look at them from a trade union point of view. Obviously you’ve got the tenants’ union, Acorn, and I just wonder what they’re doing for people who are looking for independent living. Like with anything, disabled people often get put at the back of the queue with unions and sadly sometimes in the Labour Party, although that is improving. I think we do need to have some further work with the trade unions, and they need to have some better frameworks about how they’re supporting disabled people into independent living. Acorn have been doing some brilliant work around fighting for tenants’ rights, but you very rarely see it when it comes to disabled people’s rights and independent living. I think that’s something that we need to consider, how we involve the trade union movement in all of this.”

“I’m completely in agreement with what everyone else has said, especially about the care service and how people who work in care are treated. That needs a huge overhaul. Also the private contract system, that has, like with social security benefits, the DWP, the work capability assessments etc, the same sort of principle.

My son, he’s got some experience in the care sector and he said, “I think you’ll find Mum it won’t fit in with your lifestyle”. I said, “What do you mean, it’s only like 30 minutes a day”. I soon learned what that meant; basically they could turn up anytime between 7:00 in the morning until about 10:45. I don’t always get up…I might get up at 8:00 and it takes me a long time to do my medication, to come to; I’m always in a lot of pain in the morning so if somebody’s knocking on the door at seven o’clock without telling me, “Come on, you’ve got to have your shower now”. Oh, so we had that, it went on from there, the different times…. Sometimes I had appointments to go to, I mean I didn’t work, I had appointments, I had other things I was involved with doing. They expect you’re going to behave like you sit at home all day and just wait for this person to come.  

We then had arguments where I specified, because I wasn’t comfortable…you know it’s difficult…I’m not very comfortable with people seeing my body so that was really difficult anyway, so I said I obviously want a female. “Oh yes we can probably provide that.” Oh yeah, they could probably most of the time and then one day it like a big Portuguese man and he said, “Listen I’m your carer.” I almost felt like I can’t do this, what do I? Well, I thought I had to let him in, it was horrible.  

So we had that but as soon as I did anything about, if I went to the company, the company couldn’t care less. I kind of have an idea what to do, I’d contact the manager, they would just brush you off like you know, they just don’t care. In the end I was so sick to death of it, I thought I can’t put up with this anymore. I then told the council, I said I’m just going to finish it because I said this 30 minutes a day is just actually making life worse. “Oh, alright then, we’ll send out this other thing” – I can’t remember what it’s called, it was kind of a basic support for people who have just come out of hospital so like a short term… They’re even worse, these two women came in, one said “Off you go in the shower, I’ll wait for you out here.” I could hear she was going through my stuff in my living room! They said, “If you got this gadget and if you got this gizmo” and they were very off-hand, even the older one, she was quite kind of not rude but “Oh yeah let’s pull this bit of your body, we call this the something….” but she was really quite off-hand. I thought well it probably doesn’t mean anything to you but…she was kind of like “Yeah yeah, another body to kind of…”. I was really quite appalled this was this support service for the two weeks. “Oh, get this gadget, get that gadget” so I said, “Fine I’ll make a note of it, I don’t want you anymore”. So they came for a handful of days. So that was even a worse experience than the carers coming in.  

My last bit on that is that some of the ladies I had, they were lovely, they were so good. Two of them used to work for the service when it was with the council and they both of them told me it was so much better. They got their mileage paid for, they weren’t so rushed, and they had a patch, so they had the same clients all the time and if one of them was off, was sick or going on holiday the other person had that patch. They said it worked so much better and I just thought that’s where it’s gone wrong. The thought that I’d have to have that going forward, it doesn’t bear thinking about. It’s terrifying if that’s what it’s going to stay like.”

“I think my point is on privatisation, and the private companies. In Norfolk we had Cawston Park, which was owned by a private company, another private company that was strongly related over the land. There was absolutely no transparency.  The transparency that we have to show when we’re commissioned as charities, it’s huge and when you’re a private company that doesn’t seem to apply to the same commissioners. It’s the same organisation, if we had to pay VAT to not tell the council what we did with our money that would be great.  

But people are dying because of this. No one goes into care thinking “Yeah, I just want to be horrible and indifferent or go through my day being irritable” and all that sort of stuff, it is because people are pushed between dozens and dozens and dozens of visits and given very little time to make it from one to another. And they’re paid tiny, tiny amounts of money and it’s just criminal. We see, if you look at the reports of Cawston Park, the reason people died was because there was absolutely no transparency and people were making huge amounts of money out of selling these services for the NHS and county councils all over the country.

There’s no accountability with it and that’s the same thing that’s going on in all the rest of social care services. I don’t know about the other parts of East Anglia, but what we’re now seeing is you can’t make money by offering that service in north Norfolk, and you can’t make money by offering it in the poor parts of Suffolk so there aren’t care agencies servicing those areas. We’re slowly seeing people will only offer those services where it’s…it’ll be like dentistry that you just can’t get care in certain areas.”

“The first thing that we’ve been discussing as campaigners with local government and and with the trade unions is the ethical care charters which some of the Labour-led local authorities are brokering at the moment with the unions. I wholly and fully support – as I’m sure everyone on this call does – the urgent need for improved pay and conditions for care sector. We all get that. But we have seen data that was gathered by the BBC News journalist Adam Eley which shows us that, I’m going to use the example of Leeds City Council, so since 2018 their care charges have gone up very, very significantly, even though data visualisation tells us that Leeds is projecting a very, very considerable budget deficit. That may have changed in response to the Covid grants, I’m not sure, but in any case, our concern is that the trade unions may be inadvertently, through their work pushing the needs of the care sector workers, creating a situation in which Labour-led local authorities are raising care charges for disabled people to offset the cost of the Living Wage deal. I’m sure you would agree that if we are going to do anything about intersecting structural disadvantage in this country, then we cannot have a situation in which trade union members’ rights are being properly advanced at the expense of the rights of disabled people. 

The second thing that I wanted to raise with you is the data that myself and Inclusion London are gathering on the numbers of disabled people who are in arrears to their local authority for non-residential care charging and the numbers of those people who are being pursued to court. So debt recovery, up to and including actual court proceedings. We are looking at the legal implications of that because frankly, as you know, Care Act statutory guidance, the overarching principle is the well-being principle, so quite how a local authority could be upholding the rights of the disabled person to have their well-being centred at all times in every aspect of the local authority’s delivery of care…how can that possibly be aligned with the local authority taking them to court? 

“Going back to the DWP and disability benefits, people really do need help to fill in the disability benefit forms. They’re 30 pages long, they ask for everything negative. It’s a traumatic thing that people have to do and nobody seems to understand that in local authorities when they cut services down to say “Well if we are doing it, it will only be for 30 minutes per client” when it’s taking 2 1/2 hours to do it properly. I just think that service needs to be rolled out across the country and have it there, and again provided by disabled people for disabled people and not just a generic service somewhere.”

“You need somebody that’s grounded in it, that understands the law, understands the casework that goes with it. It’s a difficult topic and I think unless somebody’s involved in it they don’t realise the ins and outs and the complexities of the system. Anybody can be an advocate. I’ve had tribunal chairs go absolutely…[unclear]…because they have an advocate with them, and they’re going “But they didn’t know the first thing about it, what are they doing here?”. This is not a hand-holding exercise, they need to know what they’re talking about. You’re letting somebody down, that’s why having a solicitor, when somebody else walks in, a window cleaner and they go “Well you can have the window cleaner today. He’s going to advocate for you, how’s that?”. No, thank you very much. We all need somebody who knows what they’re talking about. 

And Carers’ Allowance, I don’t understand the concept of it. It’s the only benefit where somebody’s signing up to say that they’re doing 30 hours of care per week and it works out about £1.60 an hour paid, when there’s a minimum wage. That to me just doesn’t add up, I just don’t understand it. I don’t know why somebody hasn’t made a legal case to challenge it, it would’ve been the European Court, probably not now, I don’t know where you would take it. But it really is the only benefit that’s like that and it’s just nonsensical.”

“I just want to take this opportunity to ask you to say this to Keir Starmer. In 2020 when he was running to be the leader of the Labour Party he emailed John Pring, who’s the editor of the Disability News Service, and he confirmed that he supported the National Independent Living Service model of social care provision, which was developed by disabled people-led organisations, and that model calls for universal, uncharged delivery of social care along NHS lines. There has been silence from Keir Starmer ever since I’m afraid and we’ve been trying very hard to get him to publicly state what the Labour Party’s position is on this and we would be very grateful to you if you could get any further information on that for us.”