Ten-year-old Olivia Locke has not been to school for two years. When she did attend classes, she became so anxious that she felt physically sick - complaining of headaches, stomach- and leg-pains - and then refused to go back.
By the time her parents removed her at the age of eight, Olivia had refused to attend a nursery, three state primaries and one private school.
Olivia has Aspergers syndrome - a form of autism that causes difficulty in processing and understanding language - but also a generalised anxiety disorder, a combination that, her parents argue, makes attending mainstream school impossible.
Her mother, Kay Locke, 45, says: "We are being told by our local authority that her needs can be met in a normal mainstream secondary school. But all the reports we have had say she needs specialist provision. My sadness is that, as parents, we felt very much labelled as being inadequate. They said: 'Just bring her into school and it will all be fine', but we felt they just didn't understand the situation. Unfortunately, there is a real culture of blame and it quickly turns into 'you and them'." The family - which is from Stockport - is now taking its local authority to a tribunal in an attempt to get Olivia a place at a specialist unit, but the process has caused a huge amount of stress and anguish for everyone.
It is families such as the Lockes that the Coalition Government hopes to help with its radical shake-up of provision for children with special needs or a disability. The consultation on its Green Paper closes today. The document boasts that the proposals will mean the biggest reform in the education and health support for children with special educational needs (SEN) and disabilities in 40 years. This is a package of reforms that has been influenced heavily by the Prime Minister's own personal views and experiences.
David Cameron, whose late son Ivan was severely disabled, personally drafted the Conservative manifesto pledge to end the "bias towards the inclusion" of children with special needs in mainstream schools. In a wide-ranging Green Paper published in March, Children's Minister, Sarah Teather, unveiled proposals that also promised to remove this "bias" from the system, as well as reforming everything from statementing to teacher training and giving new rights to - and choices for - parents.
Around two million children and young people have been identified as having a special educational need or disability. The aim of the Green Paper - called Support and Aspiration - was to respond to the frustrations of these young people, their families and the professionals who work with them, who have complained that the system is bureaucratic, bewildering and adversarial, and that there is limited choice about the best schools and care.
According to the Council for Disabled Children, on average a disabled child experiences 32 assessments as they grow up, which ministers describe as being "unacceptable" and "inefficient".
The most radical proposal would see the statement - the foundation of the SEN system for more than 30 years - scrapped and replaced with a "combined education, health and care plan", which would last until the age of 25. Ministers also hope to speed up the process by reducing the time limit for statutory assessments.
The "school action" and "school action plus" categories for children with SEN - but without a statement - will also be axed.
They will be replaced by a simpler register to "help teachers focus on raising attainment" and stop what ministers regard as the "over-identification" of special needs.
Parents will also receive "personal budgets", which would re-allocate some of the money that goes to local authorities and give it directly to parents, so they can choose how it is spent on services for their child.
Although the aspirations of the Green Paper have been welcomed broadly, some are concerned about how the changes can be delivered in the current harsh financial climate.
Many special needs experts are also uneasy about David Cameron's personal crusade against inclusion. Charities argue that there has never been a bias towards inclusion and that Mr Cameron has allowed his own experiences to colour his view of the whole system.
The Special Education Consortium - a grouping of voluntary organisations and professional associations - argues that "the supposed 'bias towards inclusion' does not reflect the experiences of parents. Too many still find it difficult to secure a place in a mainstream school, a welcome or the right support there".
Richard Rieser, co-founder of Reverse the Bias Towards Segregation and a consultant on inclusive education, says: "I think that the Green Paper is a disaster. It has completely ignored the gains and achievements of inclusive education over the years. It has been driven by David Cameron's obsession that there is somehow a bias towards inclusion and he wants to replace it with a bias towards segregation.
"They are using parental fears in a most unprincipled manner. They are saying it is about choice, when really it is about pushing their free-market ideology."
An advisor to the US president, Barack Obama, has also warned that the changes could lead to vulnerable children being segregated and denied opportunities. Ari Ne'eman - who was appointed to the US National Council on Disability by President Obama and is himself on the autistic spectrum - has urged caution over the Coalition's plans to end the "bias towards inclusion" and said all pupils deserve the right to attend a mainstream school.
The Independent Parental Special Education Advice (IPSEA), which offers advice to parents of children with special needs, states: "There is no evidence that parents making choices about their child's school placement experience a bias towards inclusion. It is IPSEA's experience that the majority of appeals to the SEND Tribunal involving school placement are appeals by parents for mainstream education." Lorraine Petersen OBE, chief executive of the National Association for Special Educational Needs, says: "I do not think there was ever a bias towards inclusion. It is about having the right provision for the child. My philosophy is that inclusion is not about place - it is about equality of opportunity in the place that is most appropriate at that time." However, Sue Bourne, head of The Avenue School in Reading, an outstanding special school which is set to become an academy in September, believes that the present system had encouraged parents to get their children into a mainstream school, meaning that those who ended up with a special school place felt this was a failure, even if it was the best place for the child.
She says: "By saying all children have the right to a place in a mainstream school, you set a challenge to parents to fight for that. I think what David Cameron is saying is that, if parents want their child to attend a special school, then they should be able to do so."
Campaigners are also concerned about the funding crisis facing local authorities, arguing that it will hamper their ability to provide for young people with special needs or disabilities.
Brian Lamb OBE, who conducted an inquiry into parental confidence in special needs for the last Labour government, argues: "The Green Paper is right to focus on better outcomes for children and more involvement of parents.
"However, there needs to be more clarity about implementation, especially against a backdrop of specialist support services being eviscerated by local authority cuts." But local government officials argue that the proposals should create savings by cutting bureaucracy while also providing better outcomes for children. Donald Rae, an advisor at the Local Government Association, insists: "We think that the system is currently over-complicated and responsibility lies in too many different places. We think there is a lot of bureaucracy to be taken out of the system. It will be about doing things smarter."
The National Autistic Society (NAS) said that reform was long overdue, as it revealed new research showing that half of all children with autism wait more than a year for appropriate educational support and over a quarter have waited more than two years.
Mark Lever, NAS chief executive, says: "It is completely unacceptable that so many parents are still fighting a daily battle for their fundamental right to get an education for their child."
Back in Stockport, Kay Locke agrees. "We are not the sort of people who would ever have wanted to take our local authority to tribunal. It has been a terrible ordeal for the whole family.
SPECIAL-NEEDS EDUCATION POLICY: A HISTORY
The Green Paper proposes the biggest shake-up of provision for children with special needs or disabilities since the Warnock Report was published in 1978.
Before then, under the 1944 Education Act, children with special educational needs were categorised by their disabilities, defined in medical terms. Many children were considered to be "uneducable" and pupils were labelled into categories such as "maladjusted" or "educationally sub-normal" and given "special educational treatment" in separate schools.
The Warnock Report in 1978, followed by the 1981 Education Act, radically changed the way special educational needs were understood. It introduced the idea of special educational needs (SEN) "statements" of SEN, and an "integrative" - which later became known as "inclusive" - approach.
The Warnock framework remained firmly in place through the 1990s. During the 1980s and 1990s there was a considerable decline in the number of children in special schools and a gradual increase in the proportion of children both identified as having special educational needs (SEN) and given statements of SEN
The Labour Government tried to improve the existing SEN framework through the SEN And Disability Act (SENDA) 2001, and the 2004 SEN Strategy Removing Barriers to Achievement. It also substantially increased investment in SEN - from £2.8 billion in 2002 to £4.1 billion in 2006. Despite this, the Warnock framework was seen as struggling to keep up with the diverse range of needs across the 1.5 million children categorised as having some sort of special educational need - causing high levels of frustration to parents, children, teachers and local authorities.
Successive reports, such as the 2006 report of the Education Select Committee and Brian Lamb's report in 2009, described a system where parents felt forced to battle for the support they needed.
The publication of the Coalition Government's Green Paper itself was repeatedly delayed. The proposals were originally due to appear last autumn, but were postponed until after the Health and Education White Papers had been released. The document's eventual publication in March this year marked the start of a four-month consultation, which ends today.
Some proposals will be piloted in selected areas from September and any necessary legislative changes will be taken forward from May 2012 at the earliest.Reuse content