Last month the Government set up a national advisory body to help families of children with special needs, but how will it operate? Julie Morrice investigates
Confusion is the lot of parents of a child with special educational needs. First there is the puzzle of diagnosis. Why is my child having problems? Is there something wrong with him or her? Who can tell me?
Then, when the problem is identified, parents embark on an area of questions without simple answers. Should our child have a record of needs? Should he or she go to mainstream schools? What other school choices are there? Will I have to pay fees? Who decides what extra help our child needs? What are my rights?
The list of questions is long, and parents find themselves on a tough learning curve, negotiating the jargon-filled byways of SEN and dealing with a parade of professionals, from speech therapists to educational psychologists.
Clear, unbiased information is the one commodity that can turn parents from despair to confidence. So, the launch last month of Enquire, a national SEN information and advice service, has been widely welcomed.
Based at Children in Scotland, the national agency for all those working with children, Enquire's staff have experience of special needs from the standpoints of parents, teachers and lobbyists. They can offer advice on the choices open to parents and to children.
Training and development officer Julia Wilson plans to hold information and training events for SEN providers in every local authority in Scotland, and mediation projects officer Morag Steven is setting up four pilot projects in different parts of the country.
Mediation between parents and local authorities is seen as the way forward in SEN. But the way Enquire will fit in with existing provision for parents remains unclear and controversial.
The running of the national service was put out to tender in February this year. Applications were made by several agencies already working in SEN, including the Independent Special Education Advice organisation. For the past two years, ISEA has been operating an advice and support service for parents. Funded by BBC Children in Need, the staff of two operate from a small office in Dalkeith in Midlothian and are supported by five parent volunteers. With nearly 500 cases on their books, and parent contacts in just about every corner of Scotland, they represent a significant body of expertise and experience. Yet ISEA did not even make the shortlist.
Lorraine Dilworth and Cathy Flynn of ISEA feel they have been cold-shouldered by the Scottish Executive. "We're not out to knock the national service," says Ms Flynn. "They won the tender and that's fine. But we want recognition from the Scottish Executive that we are a worthwhile organisation. We can't just be told to move over or disappear. We want to sort out the lines of demarcation."
Carole Moore, manager of Enquire, admits: "The competitive tendering was not helpful." She has written to ISEA detailing Enquire's plans, in the hope that the information "will allow you to determine your priorities for the future work programme of ISEA", and has met with Ms Dilworth and Ms Flynn. A Scottish Executive spokesperson say: "Enquire is running the national service, and we have nothing to add to that."
"Partnership, collaboration and involvement are now the key concerns in SEN," says Paul Hamill, head of the SEN department at the University of Strathclyde. "Those who provide advice should be able to work together to come up with a workable system. Parents need clear, unambiguous, balanced information."
There is room for two advice agencies in SEN. No two cases are exactly alike, and the complexity of the system means that working out the best solution for a child can take months. Moreover, Enquire and ISEA appear well-placed to complement each other.
From the beginning, ISEA has worked with and for parents, taking on individual cases and helping people to find their way through the mire of legislation and bureaucracy. After initial telephone contact, parents can come to the office to work through documents. ISEA staff will accompany parents to meetings if required, and are willing to contact SEN professionals on the parents' behalf. A lawyer specialising in SEN is available if problems cannot be ironed out.
Enquire, on the other hand, is well placed to make a difference on the national level. But, Ms Moore says, "we can't get into representation". In other words, they will not be able to follow through individual cases.
It seems logical that Enquire should pass on complex individual cases to ISEA, and there is agreement on that from Ms Moore. But, says Ms Dilworth, if Enquire generates more work for us, then ISEA will need extra financial help to cope. When she pointed this out to the Scottish Executive she says she was told she could apply for a grant. "We had just applied for one and been turned down," she says.
Enquire is being funded by the Scottish Executive at a cost of pound;621,000 for three years. ISEA was granted pound;80,000 in 1997 by BBC Children in Need. The final instalment will take them up to the end of 2000. ISEA also has just won pound;50,000 of lottery funding to consult with parents and professionals in every local authority area across the country on two new publications: a step-by-step guide for parents of children with SEN and a proposal for legislative change in SEN.
Politicians may hope that the establishment of mediation services, training for local authorities and an advice line for parents might be enough to banish wrangles over a child's needs. But in reality, alongside Enquire's broad canvas, ISEA's work on individual problems is going to be necessary for some time. It would be best for everyone if the two organisations could work in harmony.
Enquire helpline 0131 222 2400ISEA parents' helpline 0131 454 0082
* My child has just been diagnosed as having special educational needs. What support can parents get to assist learning?
* How do I get an assessment done to identify special educational needs?
* What can parents do when provision is reduced or withdrawn, for example when a special needs auxiliary leaves the school and is not replaced?
* What is a record of needs for? How can families be involved in the process of opening a record?
* When a child with a record of needs is being expelled from school, what rights does the family have to ensure their child receives an education?
* CASE STUDY
Dean Thomson is almost six years old and suffers from attention deficit hyperactivity disorder (ADHD). He's always on the go and never thinks of the consequences of his actions, so he can get into dangerous situations if he is not closely supervised. He has trouble concentrating on one thing at a time, which can lead to frustration and aggression.
Dean's family moved from Dunblane to Kilwinning, North Ayrshire, this summer. At Dunblane primary, Dean had a full-time special educational needs auxiliary to help him. Since changing schools, his mother Fiona says, he had no help for the first month of term until an assessment was done, and now he has only part-time help for 14 hours a week. She also has to bring Dean home for lunch because there is no one to supervise him in the lunchhour.
"The school has to follow formal procedures and it's taking too long," she says. "I phoned the educational psychologist when I knew we were moving, to warn them, because Dean has to be assessed by each education authority. That's the crux of the problem - he has to be reassessed, even though all the information has been passed on."
Ms Thomson heard about Enquire through a member of a support group, a social worker in Attention Fife, and rang the helpline to find out if she can push North Ayrshire education department to provide full-time support, because she's not happy with the cover Dean is getting.
"I want to know where I stand legally. Am I entitled to a full-time helper for my son?
"Enquire gave me two numbers to phone - the local education department, to register my problem, and Enable, a help group in Glasgow.
"They also advised me to get a record of needs drawn up. They told me to get back to North Ayrshire's educational psychologist and get them to draw it up."
Ms Thomson found the advice line very helpful. "Just to find out where a parent stands is helpful. I find it a very close-knit thing between the education department, educational psychologist and school."
She is now in the process of trying to set up a Scottish support group for ADHD.