Parents in need
Nine years ago, when Sylvia Thorne finally got confirmation that her son Robert was suffering from autism, the paediatrician tried to prepare her for a difficult future. "The advice I would give you," she said, "is start fighting now." It was a blunt warning, but nothing could have prepared Sylvia, or many other parents of children with special educational needs, for the battle to come.
Every child is legally entitled to an education that meets its needs, and since 1980 a child with special educational needs is meant to be assessed and have those needs recorded on a legal document called a record of needs.
As well as the psychologists, speech therapists and doctors, parents might be expected to be involved in the registering of their child's needs. But in many cases this has simply not happened, and parents have found themselves in disagreement with the professional assessment of their child, or the suggested course of action.
Until recently most parents in Scotland have had to be grateful for anything their child has been offered. Now, however, things are changing: parents are beginning to challenge local authorities to take them seriously as partners in educating their children, and the Government has announced plans to help.
As part of an pound;8 million boost for special educational needs, the Scottish Office is setting up an independent national advice service for children and families from April. This will liaise with existing support networks and examine ways of strengthening advocacy and support services.
Sylvia's son Robert is approaching his 12th birthday. He is severely affected by autism: his communication is very limited and he is difficult to control. Doors and windows have to be locked to stop him running out of the house anddisappearing. The only thing that makes life possible for his family, and allows Robert himself to make some sort of contribution, is the special Camphill school he attends, coming home every second weekend and for the holidays.
"When we realised Robert was not going to have an independent life, we knew we wanted him to go to a Camphill school," says Sylvia. "He couldn't be part of the community, but he could be part of that community. Our primary consideration was that he would be useful and happy, and not dumped into the community care dustbin."
Sylvia's voice still quavers as she remembers the first set-back she received. Robert was 18 months old, and they were living in London. "He had been tested by a paediatrician who suggested what he needed was more interaction with other children. I put Robert's name down for a toddler group, and they got the churchy member of the group to phone me to say they wouldn't have Robert because they'd heard there was something wrong with him."
The family went on to fight for good educational provision for Robert in London, but they had been considering returning to Sylvia's native Scotland for some time.
They had bought a property north of the border when Robert was six months old, and the diagnosis of autism strengthened their resolve to move in the belief that a rural environment might be better for him.
They had first made contact with the relevant education department when Robert was two. "We told them we wanted him to have residential education," says Sylvia, "and everything was fine, until we said we were actually moving into the area. Then we were told that things had changed.
"I was told that the council did not consider residential education to be in Robert's best interests. If we insisted on it, Robert would be taken into care. He would be fostered by another family during the week and would attend a primary school, which had a separate classroom for children with special needs. He would be returned to us at weekends."
Sylvia and her husband, Roger Clarke, had no doubts that Robert would survive no more than an hour or two at a primary school. "He is an escapee," says Roger. "He would have been out the door and on to the main road within minutes."
All the assessments Robert had been through in London were not acceptable to the Scottish council, and he had to go through them all again. Eventually Sylvia got unofficial word that the draft record of needs was ready and two schools were going to be recommended. She rushed up to Scotland to visit them - meanwhile the documents arrived in London, naming a completely different residential school. "The only problem," she says, "was that there was no place available at the school."
The Camphill school kept a place open for Robert for three years. Eventually, after a bitter battle, the council agreed to pay the fees, and the family moved to Scotland in May 1996.
Since then, the nightmare has continued. Confusion over council tax payments and electoral rolls culminated in the council claiming that the family was not resident in Scotland. It began legal proceedings against the family to claim back the fees it had paid for Robert. The family responded by taking the council to court over the residency issue. Three days before the case was due to be heard the council backed out.
Sylvia Thorne is angry. "If there was a dispute over our residency and who should fund Robert's education, it should have been a dispute between two local authorities. To this day the Scottish council hasn't even approached the local council in London."