Parents of children with disabilities have often felt disadvantaged in the childcare market, finding they are pushed down waiting lists because providers are not prepared to meet their needs. Now the recent Childcare Bill consultation has given them hope of a fairer deal, as it calls on councils to ensure sufficient places.
But organisations campaigning on behalf of these families argue that while an obligation on local authorities to act is welcome, it must be allied to improved staff training to dispel ignorance and any trace of discrimination. They say there also needs to be increased Government funding to help providers guarantee quality and anti-poverty measures, crucially to ensure affordability.
According to the Joseph Rowntree Foundation, 55 per cent of families with disabled children live in poverty. Official figures show that only 16 per cent of mothers of disabled children are able to work compared with 61 per cent of other mothers.
Contact a Family, which helps families with disabled children, revealed in a survey late last year that childcare costs for a disabled child can be twice those for a non-disabled child. In some cases where a child has complex needs and requires more specialist support, agencies providing staff can charge parents 11 an hour.
The charity's chief executive Francine Bates welcomes the consultation's emphasis on the needs of disabled children, but demands that action be taken to lift them out of poverty.
She points out that while tax credits can include a disabled child premium for children who receive disability living allowance, the childcare element of the Working Families Tax Credit does not. 'We want the childcare element of the tax credit extended to cover the additional costs for disabled children. That would help providers, whether they are childminders or nurseries, to meet the costs of extra equipment or one-to-one support.'
Janet Mearns of Working Families says that the worries about childcare and its cost dominate calls to its helpline, and increasing the childcare element 'would be a very straightforward and sensible way to help parents'.
She runs Working Families' Waving Not Drowning project, which revealed in a series of forums that parents of disabled children wanted flexible, specialised and inclusive care which enabled them to go out to work.
Jan Stoll, National Children's Home service development manager, says that there must be recognition of the shortage of suitable provision and that it compounds problems of social exclusion and poverty.
Targeting childminders
The consultation document suggests that childminders are reluctant to take on disabled children, but this is disputed by the National Childminding Association (NCMA). It carried out a survey recently of 200 NCMA members and 45 per cent revealed that they were caring for a child with additional needs. Charlie Rice, the NCMA's director of training and quality assurance, challenges the perception that childminders are not keen to care for a disabled child because it means they lose out financially from not caring for their full quota of children.
The NCMA has developed a CD and a training pack to support childminders caring for disabled children. Childminders can also access training funded by a local authority through a Children Come First network. When a childminder takes on a child they will also have training in that child's specific need.
Mr Rice says the NCMA has also been working closely with the Early Support Programme, run by the DfES, Sure Start and the Department of Health, which aims to improve the delivery of services to disabled children under three.
Training of the childcare workforce is the key issue, often to dispel the notion that all disabled children require one-to-one support. The Council for Disabled Children reckons that 80 per cent of disabled children should be able to access non-specialist provision with minor adjustments to premises and staff training, while the remaining 20 per cent would need more specialist support.
David Renton is chief executive of charity Out and About, which supports the families of disabled children to gain access to out-of-school childcare in Suffolk (see box). He says that the assumption that a disabled child requires one-to-one support may be wrong and may result in the child feeling more alienated within a setting. 'We work with settings to look at the way they operate, usually around the obvious things like access. But we try to get people to look at a disabled child as they would any other child and forget about all the labels.'
Amanda Batten, policy officer for children at the National Autistic Society, says, 'Many providers feel they are not able to look after children with autism. Parents often find themselves slipping down waiting lists for childcare places because it is easier for settings to take children without disabilities.'
In a survey, the society found that 70 per cent of parents of autistic children are prevented from going to work because of lack of childcare. It has an online database with information about local childcare providers.
Philippa Russell, a disability rights commissioner and senior policy advisor on disability at the National Children's Bureau, also hears of families who are offered shorter sessions in childcare settings or encounter 'unnecessary arguments about risk'.
Working Families says that several successful cases have been brought against private nurseries under the Disability Discrimination Act, where a child was refused a place. In most of these cases the issues were clear-cut when reasons such as 'other parents wouldn't like it' were given. It adds, 'The situation is more ambiguous when "discrimination" is put down to the need for extra supervision or equipment which would cost money.'
Good practice
While the childcare consultation puts the onus on local authorities to act to ensure that quality, affordable childcare is accessible to disabled children, there are many examples of good practice in councils around the UK. However, Purnima Tanuku, chief executive of the National Day Nurseries Assocation, says that quality varies from council to council. 'Most importantly, we would like to see more Government funding available for children with disabilities to use any appropriate childcare setting,' she says.
One good example is Bexley children and young people's service in Kent, which has secured money through the Children's Fund to allow disabled children to access one-to-one support across a range of settings and leisure activities, including Scouts and Brownies. Manager of the service, Jacqueline Skinner, says the council, which is a pilot area for a children's trust, has built up a bank of childminders in its Children's Information Service who are able to look after disabled children with more complex needs.
Pat Bunche, head of early years at Hammersmith and Fulham in London, says some of its childminders have undertaken specialist training to meet the needs of disabled children, including Makaton, portage, equal opportunities and child protection. The borough is about to create a new post that will provide a matching service for all parents, not just those with disabled children.
In Bolton, Lancashire, a pilot programme has helped train 28 staff, some from nurseries and playgroups in both the maintained and independent sectors, on issues of keyworking. A working group on keyworking has now become part of the Bolton Children's Trust for Disabled Children.
At Contact a Family, Francine Bates is convinced that developing integrated services in children's centres and extended schools and through children's trusts offers major benefits for families with disabled children. Pooling health, education and social services budgets will mean services will become more coherent. She says families are often frustrated when they seek a basic piece of equipment such as a hoist and find health and education departments arguing over who is responsible for funding it.
'Parents feel angry because the Government says childcare is a universal policy but find that it is not extended to them. At best they may face reluctance from providers, at worst downright discrimination. The childcare strategy must encompass the needs of all disabled children and their families.'
* Battling for inclusion
* For the past year Sue Woolmer has been battling to ensure that barriers excluding disabled children from out-of- school care in Suffolk are removed.
She is the inclusion co-ordinator for an out-of-school childcare project provided by a charity, Out and About, and funded by the local early years partnership.
She says she has encountered a range of obstacles to the inclusion of disabled children. 'Settings may insist that a child needs one-to-one support, without looking carefully at their needs, or they may need to take a small step to improve access. I can get funding for that. I go into a setting and do a management plan and frequently they have not communicated properly with parents or with schools to sort out a behaviour management plan.'
Viki Muller, Suffolk's head of early years, says the emphasis has been on 'capacity building' by training staff in a setting, rather than simply providing funds for one-to-one support. 'This means others can step in and we are less reliant on a single designated support worker for a disabled child.'
