Individual budgets can be used to benefit disabled children, but only where the circumstances lend themselves to personalised services, writes Molly Garboden
Personalisation has been the dominant agenda within adults’ services for several years, but is often overlooked by children’s departments. Yet many in the sector believe the families of children-in-need could benefit from personalised services.
Disabled children are an obvious starting point but progress has been slow.
Christine Lenehan, board member of Every Disabled Child Matters and director of the Council for Disabled Children, says that although disabled children can benefit from the flexibility of the system “we always knew personalisation within children’s services was going to be a challenge”.
“The main issue we’re facing at the moment is that local authorities coming on board with the programme are starting from different levels of expertise and resources. So for now we’re mostly asking questions about what skills are needed by the workforce in this area.”
In Control, a social enterprise, launched personalisation pilots for children in six authorities in July 2007. In a paper on the topic, Nic Crosby, In Control children’s director, and Simon Duffy, former chief executive, argue that personalisation is not a “disability model” or linked to any particular group.
The model can be problematic, however, when it comes to safeguarding. Tony Crouch, service manager for children with disabilities in Essex, one of the pilot areas, says giving families a greater decision-making role over their child’s care could further compromise the safety of children in abusive households.
“I think personalisation will become widespread in disabled children’s services, but, in my view, mainstream services would not be so keen to embrace the model. A lot of mainstream work is at the higher end of the spectrum in terms of looked-after children and safeguarding and although we wouldn’t necessarily exclude somebody who had safeguarding issues, it would be more questionable.”
Crouch also argues that the initial steps in setting families up with budgets can be just as valuable as families actually using the budgets. “The fact that families’ support plans are very detailed is very useful to us,” he says. “It gives us a much better picture of what’s going on with the child than what we usually have.”
Karen Good agrees. She and her 16-year-old son Stephen, who has autism, are taking part in Newcastle’s personalisation pilot and started their budget at the beginning of April. Good says the most beneficial aspect so far has been the re-evaluation of her son’s needs. “The process really made us step back and look at the services he had been using,” she says. “It was only then we realised that Stephen had outgrown some of them and needed to be challenged and engaged a bit more now that he’s older.”
Good says she “changed everything” about Stephen’s care. She’s putting a lot of the money towards his love of volunteer work in the local community. Stephen’s respite care has also been replaced with the more flexible short breaks system.
However, Martin Donkin, individual budget pilot project manager in Newcastle, warns that personalised budgets are not a complete solution to a family’s challenges. “Even with the individual budget, families can still struggle – it doesn’t just wash away all problems. Proactive families with high expectations are going to thrive under this system, but for families with a bit more negativity, an individual budget by itself isn’t going to make much change.”
He also points out that personalisation can make commissioning difficult for councils. “Families with individual budgets can choose whether they use private services, which creates competition for local authority services. That can create problems, for instance when some people don’t want to use the local authority’s residential unit but others do – how are authorities supposed to pay for a service that only a few people want?”
Crouch agrees it is a concern but says there are also benefits when it comes to commissioning. “The programme will give us a lot of pointers as to what choices service users want to make, which will ultimately help our commissioning processes – we can be that much more specific about service users’ needs.”
How do budgets work?
● Available funds are identified, unlike in more traditional means of support where plans are made, followed by fund allocation. For this reason, many argue that individual budgets can save money in the long-term.
● Service users develop a plan. The plan is focused on the child, their life and that of their family and carers. The plan maps out how the budget will be used, using the framework of the five Every Child Matters outcomes.
● The council approves the plan, ensuring it effectively delivers the authority’s duty of care.
● Families receive varying degrees of help in organising the money. They can receive help from a nominated representative, independent living trust, budget holding lead professional, care manager or other representative of children’s services. How the money is managed, and by whom, is set out in the support plan.
● Families organise their own support by speaking to providers directly.
● At this point, the family sees the new support plan in action and seeks help if support needs to change or there is a crisis.
● Finally, the plan is assessed. The review looks at whether the money has been used to provide the support as agreed in the plan. It also monitors the extent to which the budget has been used in support of achievement of the five ECM outcomes.
Roslyn Barr, personal budget user: ‘Budgeting and planning can be a lot of work’
Roslyn Barr has two children, aged seven and two, both of whom have an undiagnosed disability that impairs their vision. Samuel and Alexander received personal budgets from Newcastle Council at the start of April and Barr says the flexibility has been helpful as has the focus the planning stages gave to their needs.
“I don’t expect to stick to the plan completely because that’s not what life is like. But that’s what’s great about this system – it’s far less prescriptive than direct payments were.”
More choice means the family has been able to gain more sensory therapies such as hydrotherapy and music therapy.
“It’s great because those are both things the boys really enjoy,” says Barr. “The personalisation programme says we should prioritise their health and well-being, but it also says to make sure the children do things they like doing.”
To this end the budget has been used to give the boys a holiday.
While Barr recommends the programme, she adds that “it might not be for everybody because the budgeting and planning can be a lot of work”.
This article is published in the 20 May 2010 edition of Community Care under the headline “Don’t forget the children”