Disabled and without a carer for the night …. go to Asda

Reposted from Kate Belgrave

This one goes out to every prat MP and commentator who says we must keep hacking away at social security until there is nothing left to cut. I like to think this story will remind those people about some of the crap that disabled people have to put up with as they take the brunt of cuts:

Video: I didn’t have a carer and I was so thirsty I went to Asda at 5am in my wheelchair to get a drink with a straw and help

A week or two ago, I again accompanied Angela Smith of Wembley as she travelled to her jobcentre and work programme appointments in her wheelchair. (I first went with Angela to Wembley jobcentre about a month ago). Angela has a master’s degree and worked for about 20 years in policy and disability support until she was made redundant in a couple of years ago. Angela has cerebral palsy. She must sign on once a fortnight at the jobcentre and once a fortnight with her work programme provider, which is the Reed Partnership in Harrow. She uses public transport – the bus – to get to both places.

So. When I arrived at Angela’s house before we set off to Wembley jobcentre, Angela told me that she was very tired. There was a reason for this. She’d woken up very early – at 4am – because she’d been very thirsty. There was a reason for this, too. Angela’s afternoon carer had been off sick the day before, which meant that Angela had not had anything to drink since 2pm the previous afternoon. She finds getting a drink for herself very challenging: the involuntary movements of her head and arms makes co-ordination and turning on the watertaps difficult. Her afternoon carer usually leaves her something to drink, but didn’t on this occasion, because she didn’t come to work. So Angela woke up at about 4am, thirsty. By about 5am, Angela was so thirsty that she decided to get out of bed, climb into her motorised wheelchair and travel down the road to the 24-hour Asda to buy a drink. She said that staff at Asda helped her – “they are very nice over there.” Angela showed me the receipt from that excursion – you can see the date and 5.14am time stamped on it:

You see where I’m going here. This is the sort of reality that disabled people get to enjoy while career twats like George Osborne, Chris Leslie and Andrew Rawnsleyblather on about social security cuts being an unavoidable fact of modern life. They leave disabled people in a dangerous position indeed. I asked Brent council for a comment on this Asda situation and on Angela’s care and the council’s care and cover systems generally. That was about ten days ago and I haven’t heard a single thing back. I understand that the council has since had a meeting with Angela, but a response this way would be welcome, too. Angela is embroiled in an ongoing battle with the council about care services. The whole thing is a complete mess.

I’ve seen plenty of correspondence about it. Angela doesn’t like the agencies the council uses, or some of the carers that agencies send. She doesn’t like the restrictions placed on her direct payments spending (this is a point that several disabled people have raised with me recently). She has made formal complaints. The council argues in its correspondence that it makes adequate provision to cover care and that Angela could hire her own carers with direct payments. Angela’s point is that she doesn’t want cover from agencies that she doesn’t trust and that it’s hard to hire good people in an ongoing way when you only have a small amount of hours and money to offer.

The upshot of all this is that Angela’s younger brother is now her carer, more or less. He has been coming around in the morning to get her out of bed, washed, dressed and fed. He’s certainly been there most mornings when I’ve visited. It may be that sometimes, family is easier to negotiate, or work with or rely on. I’ve fed Angela breakfast on days when her brother has had to leave early. I fed Angela lunch on the day of the 4am Asda journey, because if I hadn’t, she would not have had lunch that day.

This is the sort of thing that happens. The care system is under enormous stress and the people who must use it really are at the rough end of it. There’s a real you-have-to-take-it-or-leave-it aspect to things for disabled people now: people are sent carers they don’t like, or different carers who they have to train anew, or carers who must rush through their hour with you to get along to their next job. If disabled people don’t like it, they’re told that they’re difficult, rude, aggressive, etc. Angela says (as many disabled people say) that it’s particularly difficult to get personal assistants after about 7pm from care agencies and/or funding to pay for personal assistants at night (Independent Living Fund recipient Sophie Partridge talks about that here). That means disabled people are put into their pyjamas and prepared for bed by about 6pm, for all the world as though they were babies.

You can see why people prefer to give all that a miss and to rely on friends and family, or people at the local 24-hour Asda. You can also see why disabled people who receive Independent Living Fund money are prepared to fight to the death for it. Those people generally use their ILF money to pay for the extra care hours that councils can’t afford. That money makes it possible for people to hire the personal assistants they choose themselves and to give those people enough hours and pay to make an income out of one job. With stable care from consistent personal assistants who understand a disabled person’s specific needs and situation, people’s health can stabilise – a point that ILF recipient Kevin Caulfield has made several times to me. Without that stability – tough shit. You have to shut your face and take what you’re given – and if you complain, you’ll be told that you’re the problem. That’s care for disabled people in the 21st century, folks – a fraught and underresourced shambles. And a dangerous one.

–———

Anyway. That was the morning. The next stage was the trip to Wembley jobcentre where Angela has to sign on. Angela uses public transport to get to her fortnightly signing-on day and also to see her work programme provider at Reed Partnership in Harrow. She describes both of these sessions as a complete waste of time. She is right. Absolutely nothing of note or use happens at that visit to the jobcentre. Going there is pointless in the extreme. We get on the bus, travel for about 15 or 20 minutes into Wembley, wait at the jobcentre for another 15 minutes for someone to attend to us and then hand over a piece of paper which shows evidence of Angela’s jobsearch activities.

That’s it. We had the same experience (perhaps I should say “non experience”) last time. There were no offers to help find work, to make calls to recruiters, or to fill in application forms – nothing. The great irony of it all was that Angela was actually writing out a job application that very day. She had to complete the application (the form was detailed) and send it off by the following Monday to meet the application deadline. She’d done a lot of work on it – before we left the house, she showed me the person specifications she’d completed on her computer. Angela showed the jobcentre staff the job ad, but the bloke we saw just sort of nodded at it. Nobody offered to help her fill in an application. Just think about that for a moment. Angela basically had to put off working on a job application to go to her jobcentre and apply for nothing. Once she had her visit to the jobcentre out of the way, she could get back to applying for a job. This “system” really is the living end.

So that was the jobcentre. Next up was a long bus ride through the rain to the Reed Partnership at Harrow – a trip which took the best part of 45 minutes. The bus driver here was very good and very helpful – quite different from the guy we got last time. That bloke left Angela sitting in her wheelchair in the doorway and then shut the doors on her foot. This driver walked down the bus and asked people to fold their buggies to make room for Angela’s wheelchair. He did have to move the bus backwards and forwards to find the right angle to lower the ramp (I think that was the problem), but we got there in the end.

Whether getting there was worth it for the meeting we had at the end of the ride was debatable. Very. The work programme guy at Reed Partnership was pleasant enough, but we wondered again at the point of it all. He booked Angela on to some sort of “employability” course. He did offer to look at the job application she was working on and told her to email it through when she got home…which meant we’d just taken a challenging 45-minute trip from Wembley to Harrow to be told to go home and email a document through…gah.

We got back on the bus and were back at Angela’s by about 4pm so that she could continue with her job application. We’d left her house at about 11am. Guess that’s a day neither of us will get back.

Read more about the fight to save the Independent Living Fund with Disabled People Against Cuts.