Survey reveals gaps in care for deafblind children

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Many local authorities are not following guidance; only one third of children in need have been identified. Anna Bawden reports Jamie Thomas, nine, from Huddersfield, has been deaf and blind since birth. When he was born, he was very weak and had feeding and breathing difficulties. One ear was completely different from the other and he had a facial palsy. After one week, his parents were told the devastating news that Jamie had a significant vision impairment. Despite all these symptoms, it was only when he was a year old that he was diagnosed with Charge syndrome - a serious congenital condition that affects about one in every 10,000 people. And it took over 15 months to diagnose his profound deafness. Lack of help It has been a struggle to get Jamie the help he needs. "Although we had a superb health visitor, there were no joined-up services," says Carol Thomas, his mother. "Jamie was seven months old before he even saw anyone from social services. And when the deafblind guidance was issued by the Department of Health, our local social services knew nothing about it. We had enormous difficulties getting them to carry out a deafblind assessment." Carol is not alone. A survey of 91 top-tier local authorities published today by Sense, the deafblind charity, has found a worrying lack of services for deafblind children. Since 2001, councils in England and Wales have been obliged to provide "effective services" to deafblind children and adults. This compels them to be proactive in identifying deafblind people in their area, provide a specialist assessment of their needs and adequate support in and outside the home. They must also appoint a senior manager with responsibilities for deafblind services. But seven years on, many local authorities are not implementing the guidance properly. According to official estimates, there are 2,100 deafblind children in England and Wales. But Sense says local authorities have identified only a third of them. Over 10% of authorities have not identified a single deafblind child. And less than half the councils surveyed said they had a named manager of deafblind services.