Carers of disabled children and direct payments

Direct payments have offered parents of disabled children the flexibility to purchase their own care services, develop close ties with a care worker of their choice, and potentially gain greater control over their lives. But many local authorities have failed to engage with the scheme and there are concerns that payments are inadequate, the system too bureaucratic and the market of providers too small.

There is also some confusion about how many parents have sought direct payments and who should be collating the figures. “We don’t collect figures for numbers of children who receive services via a direct payment as local authorities are expected to sort it out at a local level,” says a spokesperson at the Department for Children, Schools and Families. Neither are there any public sector agreement targets for direct payments to parents and carers of disabled children under 16.

There are some statistics collected by the Commission for Social Care Inspection (CSCI), however, the most recent of which reveal that 5,027 parents of disabled children had received direct payments by March 2006 – up from 3,991 in 2005.

In its report, State of Social Care in England 2005-06, CSCI says that in March 2006 there were still 43 local authorities which had not made any direct payments to either vulnerable adults or the parents of disabled children. CSCI statistics reveal that direct payments accounted for only about £1 in every £100 of social care expenditure by councils up to 2004-05.

Christine Lenehan, director of the Council for Disabled Children, believes that children’s services have “struggled to take on direct payments because they were an adult-based concept plonked on children, and it took quite a while to untangle what they meant for children”. She says local authorities have also had “a cultural concern about handing over control, and about where that squared with their child protection duties”.

Direct payments, which are provided to fund care in lieu of social care services following a needs assessment, were introduced as a cost-neutral measure. Councils using them to fund services for disabled children, therefore, have to do so from their existing budget for disabled children’s services, but also shoulder the burden of start-up funding and support services for parents handling the payments.

Jill Harrison, director of external affairs at the charity Contact a Family, takes a positive view of direct payments, emphasising that they fit in with the trend towards a more personalised agenda for social care and allow individual families to choose what services they need, and then go out and find the people they want to deliver them. However, she says that in some instances parents have been restricted to payments equating to just £7 an hour, which in many areas is nowhere near enough to secure the care they need for their child.

Another downside to direct payments, she says, is that some parents find it difficult to manage the tax and national insurance implications of becoming an employer. “People feel daunted by that, so we are encouraged by the growth of support organisations that do payroll for parents and make it easier for them to come on board,” Harrison says.

The Independent Living Association (ILA) helps parents of disabled children in West Sussex to navigate their way through the direct payments maze. Team manager Terry Stanley says the number of parents taking up direct payments has risen from 49 last year to 120 now. He adds: “The bulk of our work is employment advice, management of the direct payment itself and making sure that everything parents and carers do is in line with the rules of the scheme.”

The direct payments support scheme run by disability charity Leonard Cheshire plays a similar role to the ILA by helping the parents of more than 200 disabled children accessing £1.5m a year in direct payments in Hertfordshire. Sheila Reynolds, the council’s interim head of disabled children’s services, says Hertfordshire has developed “very clear eligibility criteria” and an equity panel decides on the basis of a social care assessment and the needs of a child and their family whether direct payments are suitable.

Reynolds says direct payments provide elements of care which would not have been possible through a traditional council-provided package, such as one-to-one support that allows disabled children to enjoy leisure activities such as riding and swimming.

The payments, which do not count as income and do not affect any other benefits, cannot be spent on statutory services. They are increasingly forming part of a holistic approach which complements and supplements services provided by education and health colleagues, she adds.

However, Harrison says many parents still find they have to prompt social workers about direct payments. “It takes time for the culture of any large organisation to change, and it will take time for mindsets to change and for social workers to routinely think of using direct payments,” she adds.

West Sussex Council ensures all paperwork sent to social workers has a “prompt”, steering them in the direction of direct payments. Stanley says: “We do tend to see the usual set of social workers involved in direct payments and we are trying to be proactive and reach out to those who don’t instinctively refer people for them.”

But Harrison says that, even when parents and social workers have been convinced to take the direct payments option, there is often a shortage of providers to fulfil a child’s caring needs and they are left “drumming their fingers wondering what they can spend the money on”. She says: “As well as promoting direct payments, the government needs to stimulate the market and encourage service providers to move into that more flexible and individualised provision.”

Lenehan contrasts the lack of providers for children with the number of providers in adults’ services and agrees that the marketplace of children’s services providers needs to be expanded. Recalling the lack of clarity and consistency in the way direct payments are implemented revealed in last year’s parliamentary hearings on services for disabled children, she argues that it is time to “rethink” what direct payments for disabled children are really for.

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This article appeared in the 6 December issue under the headline “Still an unknown quantity”