Services for disabled children are a lottery, with the level of provision determined by where a family lives and how demanding the parents are, according to a major report by the Audit Commission.
Services for Disabled Children and their Families found a jigsaw puzzle where families had to struggle to locate essential information and support from among a jumble of providers. It concluded that services are rarely based on the priorities and needs of individual families, and what is provided may often be too little, too late to make the best possible improvements to the children's everyday lives.
The study heard the experiences of more than 240 disabled youngsters, their siblings, parents and carers, who described the realities of growing up disabled.
The report said, 'Many families still miss out on their full entitlements to benefits because services don't pass on key information at the right time. And too many families have unacceptably long waits for interventions, equipment and adaptations, which mean lost opportunities for children to develop and integrate as they should.
'This has a huge impact on families. For example, waiting seven months for an adapted toilet seat can mean that a child stays in nappies and is excluded from mainstream playgroups as a result.'
The report's author, Karen Naya, the Audit Commission's public services research services manager, puts into context Britain's failure to provide comprehensive services. 'One of the things that people do not comprehend is just how many disabled kids there are. At a conservative estimate, there are 365,000 disabled children - that makes one family with a disabled child living in every street.'
According to the charity Contact a Family, every day more than 75 children in the UK are born or diagnosed with a serious disability or rare syndrome.
Although the research team found examples of outstanding practice, Karen Naya says none of the study sites was getting everything right for all the families.
'One of the problems is there are no standards. There is no consistent source of information that people can go to and say, "This is my entitlement, this is my right, this is what the services should be". This should be addressed in the new National Service Framework for Children expected later this year.'
Contact a Family says the major problems facing families of disabled children are feelings of isolation and anxiety; lack of joined-up services; severe financial worries; and inadequate information. It is working on an innovative project with the Royal College of Paediatrics and Child Health to ensure parents can get information. From next April the charity will produce information packs specifically designed for use by paediatricians, so every parent in the UK whose child is born or diagnosed with a disability or rare disorder will be given access to its information and support network.
Early intervention and proper provision of services not only enable disabled children to maximise their life chances and integrate better, but also save money, says Jill Harrison, the charity's external affairs director. 'It is much more expensive to look after children in residential care. If you can keep them at home, and support their parents to a greater degree, it saves money,' she says.
'There is a lottery in the provision of equipment and services. It depends upon where you live, how your local authority chooses to allocate funding, how efficient they are and how much demand there is.'
But is the lottery caused by a lack of funding? 'No one can really answer that question,' says Karen Naya. 'It is a reflection of the attitude to disabled children that we do not know the cost of the services. They can't tell you what they are spending. If councils don't have a clear understanding of how many disabled children there are, or what their needs are, or what their needs will be in five years' time, how can they plan for the future? It is very difficult for them to argue for extra resources if they are not sure what they are actually spending.'
The report says, 'Improving disabled children's services does not mean new targets, new structures or wholly new approaches. We found examples of services getting it right everywhere. What is needed is better management of services so that good practice is mainstreamed, leadership that makes this possible, and a new attitude, which sees social exclusion of disabled children as unacceptable.'
Its main recommendation is that all relevant public sector bodies should identify what matters most locally and agree a joint plan of action to improve services with their strategic partners, including the independent sector.
