Survey Reveals Gaps In Care For Deafblind Children

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.

Almost half of children who have been identified as deafblind have not been offered a specialist assessment of their needs, and over three-quarters do not receive any one-to-one support outside school. This means deafblind children often cannot take part in leisure activities.

Of those who do get such support, only 19% have help from specialist communicators, known as intervenors.

Three-year-old Hannah Briggs, from Diss, Suffolk, is one of the lucky ones. She was born with severe visual impairment and moderate hearing loss. But up to the age of two she had no support from an intervenor and her parents found it very difficult to communicate with her. “Before Hannah started receiving one-to-one support, she was an introverted, frustrated baby,” says her mother, Lorna. “Now she is a truly happy child who gets so much pleasure from being understood.”

In school, even those children with some peripheral vision and/or hearing struggle to learn. A report by the Royal National Institute of Blind People found that only 12% of maths and 8% of science GCSE textbooks in England were available in Braille or large print.

And with less than one qualified interpreter available for every 100 users of British sign language, deaf and hard-of-hearing children do not always get the support they need in school to communicate with their peers and teachers.

Not every local authority is doing badly. While councils in London and the East Midlands are doing reasonably well in identifying deafblind children, barely 10% are being identified in Yorkshire and Humberside or the south-west and even fewer in the north-east.

Surrey county council is one of the authorities deemed to be doing particularly well. Its physical and sensory support service team works with children from birth until 19 years old. In addition to providing intervenor services at home as well as in school, Surrey also trains teaching assistants and teachers in dealing with children with multiple sensory impairments. Some teachers have themselves trained as intervenors. “We look at children holistically when they are deafblind,” says Judy Sanderson, acting head of the physical and sensory service at the council. The emphasis is on enabling children to access social learning as well as the curriculum. Assessments are done jointly with health, social care and education specialists.

The Department for Children, Schools and Families (DCSF) has recognised that more needs to be done and has recently announced measures to support deaf and blind children in school. Pilots will seek to improve access to the curriculum for visually impaired children. And an £800,000 project will test ways of improving demand and use of British sign language.

No barrier to learning

“It’s vital that sensory impairments are not a barrier to learning,” said Lord Adonis. “Children with hearing difficulties and visual impairments have the same right to a quality education as everyone else.”

A DCSF spokesman said: “The government recognises that more needs to be done to improve outcomes and provision for children with special educational needs and disabilities, including those with multi-sensory impairment.”

But Sense thinks the DCSF has not gone far enough. “While this initiative will be beneficial to deafblind children at school and will go some way to creating more understanding, it does not address the fact that the deafblind guidance … is not being implemented for children,” says Lucy Drescher, campaigns officer. “Supporting children in school is only half the story. If the minister wants to make a real difference to the lives of deafblind children, he will take steps to ensure that local authorities meet their requirements.”

Thomas says the lack of services is usually about funding. Providers are expected to respond to more and more government initiatives, but with the same funds. “No money comes from the government with the deafblind guidance. If you do get support, you’re probably getting something at the expense of someone else. We appreciate what the local authority does, but they need to make the processes clearer and easier to understand,” says Thomas.