The great divide

Despite rising numbers of children with disabilities and their needs becoming more complex, there is often a woeful shortage of childcare places for them and no specific help for their hard-pressed families through the tax credit system.

The Children Act 2006 appears to offer these families hope. It requires local authorities to offer parents an assessment of their own needs as part of any assessment under the legislation for their disabled child. Under an earlier piece of legislation, the Carers (Equal Opportunities) Act 2004, local authorities are supposed to consider parents' needs in relation to caring and work.

But passing legislation is one thing; ensuring that it has a meaningful and beneficial impact on disabled children and their families is another. A hard- hitting report from the Every Disabled Child Matters campaign questions the effect of the new act and warns that, even with new duties in place, 'without significant demand and supply-side funding and performance targets, local authorities will continue to struggle to deliver any real improvements for disabled children'.

The demographic changes in child disability due to advances in medical technology have been dramatic. Elaine Mounter, who runs the Disability Database at Stockport Council, has no doubt that 'the population of children with disabilities is changing'. She says, 'There are children with physical disabilities that perhaps would not have survived before.'

There are many more cases of autistic spectrum disorder than ten years ago.

Research in the medical journal The Lancet suggested that it affects one in 100 children in the UK. Two-thirds of the 1,400 children on the Stockport database have a learning difficulty; one-third have a physical disability.

Instances of children with Attention Deficit Hyperactivity Disorder are 'increasing at an amazing rate', Ms Mounter adds.

In its recent report, Between a Rock and a Hard Place, the Every Disabled Child Matters campaign cites a survey in which 90 per cent of families found that the cost of childcare was a major barrier to work. Childcare for disabled children was 'neither fit for purpose nor affordable'. And, it should be emphasised, not fair either - 60 per cent of the families surveyed had been asked to pay a premium 'to cover additional support in childcare services'.

Families with a disabled child pay up to five times more towards childcare costs than other families. What the report describes as 'the affordability trap' works like this: employing a home childcarer at 8 an hour to look after a disabled child for a 35-hour week can cost at least 280. Under current working tax credit rules, 80 per cent of 175 is the maximum claim, so only 140 can be recovered against childcare costs.

The weekly shortfall of 140 makes work 'uneconomical', so the Government's preferred route out of poverty and exclusion through work is barred to many parents of disabled children. Meanwhile the shortfall for a family with a non-disabled child paying a childminder around 4 an hour is a manageable 26.40.

Inflexible rules

Liz Gardiner, policy and campaigns officer at support group Working Families, says the tax credit system is complex and inflexible for families with disabled children. 'The system works against them because it is per child and does not take into account extra costs. There may also be big variations in their childcare needs, with a disabled child having to spend time in hospital and parents having to pay for childcare they don't always use.'

Many parents of disabled children also fall foul of the tax credit rule which bars them from making any claim for childcare costs if they work less than 16 hours a week.

Philippa Russell, a disability rights commissioner and senior policy adviser to the National Children's Bureau, agrees that the Government must take account of parents' need for flexible childcare. 'The current level of tax credit is not sufficiently high or flexible for most families. For instance, you may need an induction period of time when you are not earning to identify and train the right carers,' she says.

'The Government envisaged quite rightly that the cost of delivering the Childcare Act would be largely covered by using tax credits, but local authorities will have some development costs if they are to improve the quality of childcare options.'

She says that individual budgets, which are being piloted in a number of areas, could be a useful way of assessing a disabled child's needs and allocating money. 'Individual budgets may well make a difference, but we don't know at this point how much childcare will be incorporated within them.'

Ms Russell praises the Early Support Programme, which is funded by the DfES through the Sure Start Unit and has been developed in conjunction with the Department of Health and the voluntary sector. 'It has had a huge impact because it has encouraged local authorities, local children's services, parents and the voluntary sector to get together at local level to improve all the arrangements around the early identification and provision of support for families of very young disabled children,' she says.

Originally designed to help parents of disabled under-threes, the DfES says its principles are now being applied to children under five. When it launched the ten-year childcare strategy, the Government said it intended to build on the work of the Early Support Programme, stating, 'The introduction of key workers and Family Service Plans will help facilitate both earlier discussions with parents about their childcare needs and the provision of information.'

Ms Russell says the programme has been particularly effective in helping parents of newly diagnosed children who 'need a lot of support in understanding the system'.

Helen Norris, head of specialist support services in Bromley, London, and head teacher at the Phoenix children's resource centre, says the borough has used the programme to support the families of very young disabled children from the moment they are discharged from hospital. This has become crucial as the council has 'identified a large increase in children with profound and multiple learning difficulties, especially premature babies born between 24 and 27 weeks that might not have survived before'.

Bromley has pioneered the use of 'dual workers' trained in a range of medical competencies, such as tube feeding, to promote an inclusive approach. Once they are approved by a senior nurse trainer, these staff are then deployed to help disabled children within mainstream settings.

The council is also bidding for funds from the second phase of the Childcare Affordability Programme, which aims to provide additional help to parents of children with disabilities. Helen Norris is adamant that these families should not be charged more just because their child needs extra support.

June O'Sullivan, chief executive of the Westminster Children's Society, says she would like to access the element within the Transformation Fund for special educational needs directly to develop training programmes. The WCS has trained parents as learning support assistants to work with disabled children in return for a free childcare place.

In Bradford, six children's centres are receiving extra resources to each cater for the needs of eight disabled children - money which had previously been channelled into nursery classes and nursery schools. Maggie McDonald, acting access and inclusion manager, says the decision to develop what are now known as children's centre-plus facilities followed a review of the city's SEN provision. Specialist schools have been closed down and new ones have been built on the sites of maintained schools.

Training the workforce

Giving families access to childcare places must be allied to developing high-quality training. Liz Gardiner says, 'There must be sufficient support with the right staff who are able to understand the needs of a disabled child. This training should be embedded in all childcare courses.'

Philippa Russell says the Children's Workforce Development Council 'has done a great deal of positive work around raising awareness on disability in its workforce development'. She echoes the views of the EDCM campaign report in urging local authorities to engage with families of disabled children in developing local training and strategy. Among a raft of proposals, the report also calls for a national disability childcare fund to develop a skilled workforce and increase the supply of childcare places.

The political profile of the campaign for better services for families with disabled children has been raised by Ed Balls MP, former special adviser to Chancellor Gordon Brown. Mr Balls has launched a private member's bill calling for a minimum entitlement to short breaks for such families. He has also supported calls for a review of services for them.

Campaigners are hoping that this signals that the issue will be prioritised in the next comprehensive spending review in 2007.

Further information

* www.edcm.org.uk