Signs of the times

23rd June 1995 at 01:00
Parental choice is an illusion for many families with deaf children. Emma Sterland reports. Ian Holloway is a premier division footballer playing for a London team - Queen's Park Rangers - but he has made his home in Bristol and drives 240 miles a day to get to and from work. It is a gruelling trek, but one he makes for the sake of his daughters' education.

Five-year-old twins, Chloe and Eve, and their younger sister Harriet, aged three, were all born profoundly deaf. They communicate in British Sign Language (BSL), and the older girls have a grasp of written and spoken English. Their school, Elmfield School for the Deaf, adopts a bilingual approach - teaching BSL as a first language, spoken and written English as a second.

It has proved to be the ideal place for the sisters, who have grown up perfecting their sign language on each other. But it is an education for which their parents have had to make sacrifices. For them parental choice has no real meaning: the education they wanted for their children is not available in most education authorities.

According to the National Deaf Children's Society (NDCS) - which offers a country-wide network of advice, support and information to parents - the Holloways' story is not unusual. Education officer Annette Joseph says some families feel compelled to move house to meet the needs of their children - but for many, physically crossing the country is beyond their means. "Most of my work involves talking to people who ring about alternative placements for their children," she says.

Three years ago, Ian and his wife Kim moved to Camberley, Surrey, so Ian could be closer to his club. Chloe and Eve were then nearly three, so their parents started looking for a suitable nursery with a good standard of BSL. "We'd been learning BSL ourselves from the moment we discovered the twins were deaf, and our son William (7), who's hearing, has been brought up with sign language, " explains Ian. "So we knew the girls needed an environment where sign language was being used fluently to really stretch them at that age."

But there was no real choice of local nurseries offering BSL. The nearest was across a county boundary, an hour away in Reading, Berkshire. It meant a long taxi ride each day for the twins - with an escort who couldn't sign. "When they got to school they were encouraged to use their voice, so if they asked for a drink in perfect BSL they wouldn't get one", says Ian. "Then they'd come home at night and we were signing, so it was total confusion. In the end they would just babble."

For a year the Holloways battled with the local education authority to raise the level of signing in the nursery. The twins were falling behind in their language development and they were extremely unhappy. "We had to drag the girls out every morning screaming and crying because they weren't getting anything out of school," says Ian. "It was really heartbreaking."

The final straw came during a trip back to Bristol, Ian's home town, when the family visited Elmfield School, run by Avon County Council. "We just wanted to see what was happening there, so we took the girls along one afternoon, " explains Ian. "All the other children were signing and the twins joined in straight away. When it was time to leave, they signed that they wanted to stay - and that was it really!"

The Holloways knew that if they chose to stay in Surrey, their troubles would only increase when the twins reached school age. "We had no choice of primary school," says Ian. The nearest one, which taught sign language and English together, was miles away across yet another county boundary in St Albans, Hertfordshire. At this point they could have chosen to let the girls board, but they rejected that idea.

By this time they were also thinking of Harriet's future. Although doctors had told Ian and Kim that the cause of the twins' deafness was a mystery - "just one of those things" - their younger sister Harriet was found to be profoundly deaf when she was tested at 12 weeks of age. "Then they said it must be hereditary," explains their father, "although there's no history of deafness on either side of the family."

With Harriet's diagnosis in mind, the Holloway's decided to move back to Bristol and Ian started commuting. Harriet attends Elmfield's nursery, learning the language of sign. Most fluent in the family is her hearing brother William, but other relatives are learning too, like Ian's brother. Lip reading is also taught at Elmfield and the children are encouraged to use their voices with help from speech therapists.

Annette Joseph of the NDCS says the biggest problem parents face is the inconsistency and diversity of provision. "Different local education authorities have adopted different policies - whether it's sign language, auralism, individual mainstream, group integration or a resource-based unit - and what is available locally will be determined by the policies of that LEA."

Parents are also now more ready to challenge the professionals, to ask more questions and to look at what other boroughs are doing, says Ms Joseph. Having caught a glimpse of the alternatives, they are then faced with the ineffectiveness of their position. By law, parents of deaf children - or any special needs children - only have the right to express a preference for their child's schooling. They do not have the right to make a choice. That's when many families feel forced to move.

Claire Lewis rang the NDCS when her daughter's statutory assessment came through from Wandsworth Council. It declared that, as a severely hearing-impaired child, Amelia would need good acoustic conditions and a small class size. Claire strongly resisted the provision offered, which seemed to contradict this assessment. "There were two normal-sized classrooms knocked into one, the ceilings were really high and there was no carpet so the acoustic conditions were dreadful - the sound just reverberated all over the place. "

Annette Joseph says her caseload is full of parents who have reached this sort of impasse. Part of the problem is that LEAs are now being moved to provide increasingly detailed statements of a child's needs with more specified information about the sort of provision required. In many cases this has a backlash effect, with parents demanding to know why the needs so clearly outlined in their child's statements are not being met by the provision offered.

Claire Lewis asked Wandsworth to place her daughter in an existing independent school in the borough with small class sizes, a full-time special needs teacher and two signing teachers. She produced letters from educational psychologists and audiologists, advice from the NDCS, and even an admission from the LEA's choice of school that it was indeed unable to provide the provision Amelia needed. "No one at Wandsworth was even prepared to listen," she says. "They seemed to resent a parent wanting to get that involved."

Declining to comment on individual cases, Wandsworth's head of special needs, Elizabeth Powell, says: "Where we are not able to meet a child's needs from within our own provision we do, from time-to-time, seek placements within the independent sector, but the decision has to comply with three requirements - that it is based on the child's needs, that what we're recommending is compatible with the needs of other children, and that it's an efficient use of resources."

The Lewis's battle with their LEA lasted a year before they decided to move. "We were totally worn down with it all, so, in the end, we decided leaving was the easier option," says Claire. The family now lives in Kent, and Amelia goes to a school in Tonbridge run by the county council.

For many parents, of course, moving is not an option. Rosalind Barrett, who lives in Somerset, has the unenviable choice of sending her six-year-old son Bobby to one of two residential schools out of county. One is in York, the other is in Exeter with fees paid by Somerset. The family's home is also their business and they are unable to sell it.

Bobby suffered a stroke at the age of two, which disabled his right side, and made speech and walking a problem. Through physiotherapy, he gradually regained the use of his arms and legs and learnt to talk, but by then his development was lagging three years behind other children's. In November last year he contracted meningitis which has left him profoundly deaf.

The special school which Bobby has been attending since his stroke has no qualified teachers for the deaf. "But he obviously needs more than they can give him now - he just can't communicate with anyone or join in, and he can't learn anything new," says Rosaline.

For Rosalind, the prospect of sending her child - who has the mental age of a three-year-old - away to residential school is more than she can face.

"We haven't decided what we're going to do yet. To be honest, I'm still just so upset about him being deaf, I can't even think about anything else."

As Annette Joseph says, there is no easy solution for any of these families. "I'm not bashing LEAs, I'm not bashing professionals. What I am saying is, why am I so busy? Why is my phone ringing all day?" * National Deaf Children's Society, 15 Dufferin Street, London EC1Y 8PD. Tel: 0171-250 0123

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