Mike Davies asks whether the aim of direct payments is to help families take charge of their care, or help the state cut back on its responsibilities…
When you’re trying to come to terms with need, whether it’s your own disability or perhaps that of your child, you want help. Genuine, effective, timely help.
When my household was first dropped into the world of disability, we benefited from the kindness of some family members, but that’s rarely a whole solution in itself – not everyone has an extended family living nearby. And besides, they shouldn’t have to feel responsible for meeting all of your needs, especially if they have dependants of their own.
This is where you might expect ‘The System’ to step in and help. After all, even the most rabid state-shrinker would surely want to think that our society is capable of looking after its own – especially those who, through no fault or misadventure of their own, are affected by physical or mental disability. It’s what keeps our species a notch or two above amoeba on the evolutionary scale.
When it happened to us, we naturally approached Social Services. One social worker listened to our combination of challenges and sighed helplessly (true). Another suggested that we would be better off financially if my wife and I split up (also true). Someone else offered me a shed, because “Men need somewhere to go,” (unbelievable). However, we were eventually introduced to the idea of direct payments. I’ll reveal how we got on with them later – but first I was interested to see whether the system is still going and, if so, how it’s doing.
Freedom to manage
The principle is clear enough: freedom to manage your own affairs. Or, as the NHS Choices website puts it, “Direct payments aim to give you more flexibility in how your services are provided. By giving you money instead of social care services, you have greater choice and control over your life and are able to make your own decisions about how your care is delivered.”
You can look at this in two ways. Some people (particularly politicians) will say that choice trumps everything else. In a 2009 article for The Independent, then opposition leader David Cameron used his own experiences of being father to a child with disabilities to make his case: “A really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities – through personal budgets and direct payments.“
Mind you, he also complained that, “Life for parents of disabled children is complicated enough without having to jump through hundreds of government hoops…answering the same questions over and over again, being buried under snowdrifts of forms, spending hours on hold in the phone queue.” Given the increased pain that the people with disabilities are experiencing through his government’s welfare reforms, it makes you wonder whether he should have ditched his Work and Pensions Secretary instead of his principles.
Bitterness aside, there are undoubtedly ways in which arranging your own care can achieve a better result. Care budgets are not limitless, so if the only help your local Social Services can offer is at a time which is inconvenient for you, that’s no help at all. On the other hand, if the money is paid directly and you can find the right person to help at the right time, then all well and good. It’s that ‘if’ that’s the problem, though. What if you can’t?
Glossy on the surface
One mother of a child with complex physical and learning needs, including challenging behaviour, told me that the system initially worked well, especially when she was able to recruit carers from her child’s existing services. However, people move on, which means she would often find herself having to go through the hassle of recruiting and training someone new. And when the needs are complex, there’s a lot to explain. “They should have a register of people who are looking to provide care,” she suggested.
Another problem is the limited range of things you can put the money towards. For example, she could pay someone to care for her child while her family goes on holiday. She could also pay for her child to go on holiday with someone else. However, she’s not allowed to put direct payments towards a shared holiday for her whole family. As for using the money to buy a special wheelchair that would be genuinely helpful, forget it.
Another mum of a child with severe learning difficulties, complex epilepsy and very challenging behaviour told me that the direct payment system “Looks glossy on the surface, but the reality is very different.” Although she admits that it “Can be brilliant,” – especially for those with reasonably straightforward needs – when it comes to more complex cases, the system seems to fall down.
Echoing the first mother, she said, “It’s very difficult to recruit someone – people don’t want to do this for a couple of hours here and there.” What’s more, the administration can be quite daunting since as an employer, you are responsible for tax, insurance and employment rights. She’s previously had threatening letters from the Inland Revenue, and when pleading her case was told to “Get your accountant to sort it out.” As she points out, “I don’t want to be an employer – I’m a mum!”
Our own experiences have been equally depressing. We interviewed a number of people in response to our advertisements, but no one wanted to do what we needed. After a while, we re-advertised. This time there were no nibbles at all.
When we fed back to Social Services, we asked whether we could use the money in another way – to pay for a much-needed family break, perhaps? The answer was no. Heartbreakingly, we had to watch as hundreds of pounds which, let’s face it, had been granted to our son, was returned. The payments were stopped. The account was emptied.
This is what makes me question the whole premise of the scheme. If you’re going to give people the freedom to manage their care, then surely they should have the freedom to use the money in any way that will help?
Taking that money back casts doubt over the process. Is it really about empowerment? Or is there actually another motive, such as saving money? If, despite your best efforts (while saving the system a lot of legwork and employment costs, of course) you can’t procure the help you need, and nothing is offered in its place, a cynic might suspect the latter.
You can find further details about applying for and managing direct payments from the NHS Choices website