Users and carers fight restrictions on use of personal budgets

Cash-strapped councils are accused of stifling people’s creativity by imposing restrictions on recipients of personal budgets. But some service users have cast off the shackles, writes Vern Pitt (picture: One service user with autism uses his payments to participate in World War 2 re-enactments)

Personal budgets were designed to enable service users to have maximum choice and control over how their eligible needs for care were met. Yet Community Care and Unison’s annual personalisation survey finds significant restrictions being placed on clients’ use of budgets even for seemingly uncontroversial items. A quarter of social care professionals said service users faced a high level of restrictions in using their budgets for holidays, 13% said this was the case for computer equipment or attending sporting or entertainment events, and 10% for participating in sport.

Julie Stansfield, chief executive of personalisation charity In Control, says such restrictions are “stifling people’s creativity”. Although with councils under more pressure to control spending, she understands their position, she says. “It’s a really tough environment at the moment and local authorities are looking at every way possible to save money. In some circumstances, however, this is not about cuts, it’s about culture and the fact that some councils are basing decisions on what they feel the person is eligible for and base this on the traditional services the person would have received before personal budgets.”

David Congdon, head of campaigns and policy at Mencap, blames a failure to recognise eligible needs, which councils have to fund. He says care plans should clearly identify eligible needs. Without these, officials can deny access to money if they do not think a creative service is meeting a need.

“My advice is for people to challenge the council in the courts if they think that their needs are not being met,” he says.

Community Care spoke to two users and carers about their experience of restrictions and why freedom to spend personal budgets creatively has been so important.

Flexible support from direct payments

Today Gill Leach is able to walk again, but it is entirely possible that would not be the case if she had not had flexible support from direct payments.

Last July, Leach was diagnosed with Guillain-Barré syndrome, a temporary condition that damages peripheral nerves. She was left unable to stand or climb stairs. She was expected to take about two years to recover. However, she told Community Care last month: “I have just had an appointment with my consultant and she looked amazed at how quickly I had recovered.”

Direct payments have allowed her to concentrate on rehabilitation by paying for childcare. “I couldn’t look after my children; not when you’ve got a three-year-old who might be in danger upstairs and you can’t get to them,” she says.

Initially, she was prevented from accessing childcare because it was seen as meeting the children’s needs, not hers. What she needed was time, rather than support for herself, to do rehab exercises throughout the day. She says a supportive social worker played a big role in brokering the deal for her to use her direct payment for childcare. “It was crucial to have someone who could listen, would not just stick to the common lines of thought and was willing to think around a problem to find a solution,” she says.

Some of her budget also pays for personal care in the mornings, which she says helped to show she was using the money correctly.

Without a direct payment that could be tailored to her needs in this way, Leach says family life would have been strained. “My husband would have had to give up his job, then we would have been on benefits and cost the state even more money. It was the only option.”

Teenager with autism is keen on WW2 re-enactments

Alexander Percival is never happier than when under fire on the beaches of Normandy or storming the bunkers of Nazis. That’s why he uses his direct payment for support that enables him to attend World War Two re-enactments at weekends.

Percival, 19, has autism and finds it difficult to cope with change and to communicate with other people. But his mother, Sally, says: “When he is talking about World War Two he can really push himself and do amazing things, yet he would not be able to go to our local pub.”

Alexander has received a direct payment for more than 10 years, managed by his mother. She says the change has been gradual but transformative, building his self-esteem. His attention to detail is admired in the re-enactment group, which values accuracy and pristine period kit.

However, it has not been without some restrictions. Cumbria Council, which provides the direct payment, refused a request to invest in a period military ambulance, which Alexander and his mother wanted to convert into a camper van, to use as accommodation for re-enactments. Currently, the council funds his personal assistant’s half of a hotel room when they go on re-enactments.

“Common sense tells me that would have been the most sensible option. It’s a real cost saving over going to a hotel,” says Sally.

Cumbria Council argued that the ambulance was not a sound investment because of its age, although it has financed similar arrangements before. Additionally, Alexander’s need to attend college was more pressing and the budget would not stretch to funding both.

But Sally says her son’s college achievement has greatly improved as a result of the lift the re-enactments give him: “He has the courage now to try new things now. Before he would have just said he couldn’t do it.”

Alexander will continue to go to re-enactments with his PA.

Council placed restrictions on use of direct payments

A blind mother of two, Cindy Peacock was stuck in the house “surviving” because the council placed restrictions on how she could use her direct payments.

“I had become isolated but I didn’t know any different,” she says.

When those restrictions were lifted it set in motion a chain of events that mean Peacock is now more independent and less expensive for her local authority to support.

Previously, the council had refused to let her use the direct payment for support at a local mother and toddler group, arguing that the money was being used to support her child, not her.

But this changed when she moved on to her council’s personal budget system. “That led to me meeting new friends and then going out with them. From there, I could pay them to do things, which saved money that I then used that to pay for a computer,” she recalls. It is unlikely she would have been able to afford the computer under the restricted system.

The computer has text-to-speech software, for which Peacock needed special training, allowing her to manage her own correspondence, maintain a social network and hold down a job as a support worker.

“I receive a lot less money now than when I was stuck at home. I don’t need as much support now because I can do a lot of things myself,” she says.

Peacock says she is the exception and fears the ideals of personal budgets have been lost in bureaucracy: “When personal budgets first came out it was all about ‘you can spend your personal budget on whatever you want as long as it meets your needs’. As time has passed more restrictions have been put on that. It is falling back into the system from before.”

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