The Care Bill presents a once-in-a-lifetime opportunity for disabled rights

The Care Bill returns to the House of Lords this week. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

Here’s why social care is so important. Disabled people want to live independently. Sometimes they need support to do so. That could be a personal assistant to help them get up, get washed and dressed. In 2013, I think most people would agree that this support should be in place. But independent living also means disabled people having a say in where they live, who they live with and how they go about their day. This means not being forced to get up the same time every day, eat at the same time every day and go to bed at the same time every day. Again, in 2013, I think most people would back that aspiration. Unfortunately, this doesn’t reflect the reality of many disabled people’s lives.

Take Martyn Sibley, a young disabled internet entrepreneur. He runs Disability Horizons and has just trekked from John o' Groats to Lands’ End in his electric wheelchair. He also still has to argue with his social worker about getting support to go to the toilet. This is unacceptable.

During party conferences Nick Clegg talked-up capping care costs; Ed Miliband backed whole person care and Jeremy Hunt championed integration of health and social care. In the summer the Chancellor found £3.8bn in June’s spending review to start to tackle the crisis.

The Care Bill returns to the House of Lords this week. It’s a once-in-a-lifetime opportunity to reform the care system. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

I’m Chair of the Care and Support Alliance, a coalition of 75 organisations working together to improve the social care system in this country, so I know how important these issues are for older people, their carers as well. At the moment, there are two fundamental problems.

First, the London School of Economics estimates that 69,000 disabled people who need support to live independently don’t get it. Cash-strapped councils have been upping the bar for eligibility, with 83% of councils now setting the threshold at a higher level than they once did. Under the Government’s plans, all councils could set eligibility at the higher level. Experts say this will leave 105,000 disabled people outside of the system altogether. The Care Bill gives political leaders the chance to be take bold steps to reform the system.

The second problem is that even if you’re lucky enough to be in the system, it can be a struggle to get support that genuinely promotes independent living. In one recent survey, 40% of disabled people said that local care doesn’t meet basic needs like getting up, getting washed and dressed and getting out of the house.

Getting social care reform right will provide the groundwork. But councils need to place independent living at the heart of commissioning. Every disabled people should have a say in what support they receive, and how, when and where they receive it. Meanwhile, organisations like ours can’t just shout from the sidelines. We have to work together to show what’s possible. This means looking to the future, piloting and testing new ways of working, and making tough decisions about the services we provide.

As an example from our own organisation, Scope runs care homes. Our staff do a great job, but many were opened in the 70s, aren’t located in the heart of the community, and are simply not set up to offer disabled people enough choice and control in the 21st century. In the last five years, Scope has changed or closed ten of these services; last year, we decided to review all of our residential services for disabled adults because of these concerns. We’re now proposing to change or close more over the next three years. This will always be done in consultation with those most affected: disabled people who use them, their families and our staff, and we’ll always do our best to support all of those involved. But if we want to give disabled people the same say over where they live and how they live as everyone else, change is unavoidable.

I believe we can build a society where disabled people can genuinely live independently, but we have to think big. That starts this week with the Care Bill.

Will the Government put their money where their mouth is? Image: Getty

Richard Hawkes is chief executive of the disability charity Scope.

Photo: André Spicer
Show Hide image

“It’s scary to do it again”: the five-year-old fined £150 for running a lemonade stand

Enforcement officers penalised a child selling home-made lemonade in the street. Her father tells the full story. 

It was a lively Saturday afternoon in east London’s Mile End. Groups of people streamed through residential streets on their way to a music festival in the local park; booming bass could be heard from the surrounding houses.

One five-year-old girl who lived in the area had an idea. She had been to her school’s summer fête recently and looked longingly at the stalls. She loved the idea of setting up her own stall, and today was a good day for it.

“She eventually came round to the idea of selling lemonade,” her father André Spicer tells me. So he and his daughter went to their local shop to buy some lemons. They mixed a few jugs of lemonade, the girl made a fetching A4 sign with some lemons drawn on it – 50p for a small cup, £1 for a large – and they carried a table from home to the end of their road. 

“People suddenly started coming up and buying stuff, pretty quickly, and they were very happy,” Spicer recalls. “People looked overjoyed at this cute little girl on the side of the road – community feel and all that sort of stuff.”

But the heart-warming scene was soon interrupted. After about half an hour of what Spicer describes as “brisk” trade – his daughter’s recipe secret was some mint and a little bit of cucumber, for a “bit of a British touch” – four enforcement officers came striding up to the stand.

Three were in uniform, and one was in plain clothes. One uniformed officer turned the camera on his vest on, and began reciting a legal script at the weeping five-year-old.

“You’re trading without a licence, pursuant to x, y, z act and blah dah dah dah, really going through a script,” Spicer tells me, saying they showed no compassion for his daughter. “This is my job, I’m doing it and that’s it, basically.”

The girl burst into tears the moment they arrived.

“Officials have some degree of intimidation. I’m a grown adult, so I wasn’t super intimidated, but I was a bit shocked,” says Spicer. “But my daughter was intimidated. She started crying straight away.”

As they continued to recite their legalese, her father picked her up to try to comfort her – but that didn’t stop the officers giving her stall a £150 fine and handing them a penalty notice. “TRADING WITHOUT LICENCE,” it screamed.


Picture: André Spicer

“She was crying and repeating, ‘I’ve done a bad thing’,” says Spicer. “As we walked home, I had to try and convince her that it wasn’t her, it wasn’t her fault. It wasn’t her who had done something bad.”

She cried all the way home, and it wasn’t until she watched her favourite film, Brave, that she calmed down. It was then that Spicer suggested next time they would “do it all correctly”, get a permit, and set up another stand.

“No, I don’t want to, it’s a bit scary to do it again,” she replied. Her father hopes that “she’ll be able to get over it”, and that her enterprising spirit will return.

The Council has since apologised and cancelled the fine, and called on its officials to “show common sense and to use their powers sensibly”.

But Spicer felt “there’s a bigger principle here”, and wrote a piece for the Telegraph arguing that children in modern Britain are too restricted.

He would “absolutely” encourage his daughter to set up another stall, and “I’d encourage other people to go and do it as well. It’s a great way to spend a bit of time with the kids in the holidays, and they might learn something.”

A fitting reminder of the great life lesson: when life gives you a fixed penalty notice, make lemonade.

Anoosh Chakelian is senior writer at the New Statesman.