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Council to pay up for
autistic boy
TANYA THOMPSON HOME AFFAIRS CORRESPONDENT
tthompson@scotsman.com
THE parents of an autistic child who sued their
local council for refusing to fund a pioneering treatment to help his
condition have won a landmark case at Scotland’s highest civil court.
Christine and Malcolm Mahony fought a six-month campaign against West Lothian Council, which culminated in a judicial review at the Court of Session.
Only twice before in Scotland had legal aid been granted to a child to fight such an action.
The legal challenge centred on their son Lewis, six, who was undergoing a world-renowned therapy known as ABA - applied behaviour analysis - which was funded by the local authority for almost two years.
In August 2002, the family, who live in Linlithgow, were told that the council was no longer prepared to finance the £20,000-a-year programme.
Mrs Mahony, a former teacher who spent almost £15,000 on her son’s education following the council’s decision, will be reimbursed since the court ruled in her favour.
She said: "Lewis was doing so well, but ABA was an expensive programme so we asked for funding.
"He continued to flourish and we could see the improvements in his language and social skills since he had started ABA.
"As he progressed, he started at a mainstream nursery, which was wonderful.
"Then one day we got a letter from the council saying they were not prepared to fund it any longer.
"I felt like my little boy’s future had been snatched away. The programme was tailor-made for him, but they were telling us we couldn’t continue."
Mr and Mrs Mahony took their case to a lawyer, who secured legal aid and pursued it through the courts.
The couple felt let down by the council and believed the alternative treatment on offer was rudimentary, and would make their son regress.
"We found ABA ourselves because we had been offered speech and language therapy but it didn’t help," Mrs Mahony added.
"Lewis was losing speech and going backwards until he started doing ABA," she said. "The council’s option was to send him to a nursery with untrained help, rather than specialists.
"When they pulled out, we continued to pay for it ourselves."
ABA is a home-based method of intensive behaviour therapy, which was developed by Professor Ivar Lovaas in the 1960s.
Children receive up to 40 hours a week of one-to-one teaching for up to five years.
All skills are broken down into small tasks, which are achievable, and the teaching is very structured and accompanied by lots of praise and rewards.
Experts believe that it can dramatically improve an autistic child’s development.
It is widely used in the United States, and in England and Wales more than 100 local authorities favour the system.
Although expensive, the Mahonys claim that the alternatives, such as a residential course, would have cost the council £100,000.
Mrs Mahony, 43, was bewildered by the local authority’s refusal to continue with ABA.
She said: "There was a lot of opposition to it.
"The council felt that they were the professionals and they knew best. But we just weren’t prepared to accept that."
As the law stands, local authorities have a duty to provide proper education to all children, especially those with special needs.
Each parent can request a "record of needs" - a legally binding document which sets out how best to help the child’s development.
Lawyers for the family successfully argued that it was illegal for the council to withdraw funding and alter the record of needs without conducting a proper review.
Lesley-Anne Barnes, an Edinburgh-based lawyer who specialises in education and represented the family, said: "The parents were saying that if Lewis was taken off the programme there would be a serious risk of him regressing. The court accepted that the review was unlawful.
"It is an area where it is very difficult for parents to challenge ... and this family is among the first to do so.
"The councils have had free rein and the law is very much weighted against parents.
"But education law is a very new and up-and-coming area, and more people are becoming aware of their rights," Ms Barnes added.
Last night a spokesman for West Lothian Council said a review was under way.
"We are aware of the Court of Session decision, which we respect," the spokesman said.
"We will now be carrying out a review of the situation.
"In the meantime, we will take steps to ensure the educational needs of this youngster are met."
Last month politicians backed calls for a new medical unit in Scotland, dedicated to the treatment of autism.
Action Against Autism (AAA) submitted a petition to the Scottish parliament requesting the unit as well as funds for research into the treatment and causes of the condition.
The charity claims that Scotland does not have the expertise to help those suffering from autism, which forces parents to travel abroad to get the help they need.
Campaigners believe that Scotland is facing a crisis, with the number of cases of autism rising from one in every 2,500 of the population to one in 166 over the past ten years - an increase of 1,600 per cent.
Christine and Malcolm Mahony fought a six-month campaign against West Lothian Council, which culminated in a judicial review at the Court of Session.
Only twice before in Scotland had legal aid been granted to a child to fight such an action.
The legal challenge centred on their son Lewis, six, who was undergoing a world-renowned therapy known as ABA - applied behaviour analysis - which was funded by the local authority for almost two years.
In August 2002, the family, who live in Linlithgow, were told that the council was no longer prepared to finance the £20,000-a-year programme.
Mrs Mahony, a former teacher who spent almost £15,000 on her son’s education following the council’s decision, will be reimbursed since the court ruled in her favour.
She said: "Lewis was doing so well, but ABA was an expensive programme so we asked for funding.
"He continued to flourish and we could see the improvements in his language and social skills since he had started ABA.
"As he progressed, he started at a mainstream nursery, which was wonderful.
"Then one day we got a letter from the council saying they were not prepared to fund it any longer.
"I felt like my little boy’s future had been snatched away. The programme was tailor-made for him, but they were telling us we couldn’t continue."
Mr and Mrs Mahony took their case to a lawyer, who secured legal aid and pursued it through the courts.
The couple felt let down by the council and believed the alternative treatment on offer was rudimentary, and would make their son regress.
"We found ABA ourselves because we had been offered speech and language therapy but it didn’t help," Mrs Mahony added.
"Lewis was losing speech and going backwards until he started doing ABA," she said. "The council’s option was to send him to a nursery with untrained help, rather than specialists.
"When they pulled out, we continued to pay for it ourselves."
ABA is a home-based method of intensive behaviour therapy, which was developed by Professor Ivar Lovaas in the 1960s.
Children receive up to 40 hours a week of one-to-one teaching for up to five years.
All skills are broken down into small tasks, which are achievable, and the teaching is very structured and accompanied by lots of praise and rewards.
Experts believe that it can dramatically improve an autistic child’s development.
It is widely used in the United States, and in England and Wales more than 100 local authorities favour the system.
Although expensive, the Mahonys claim that the alternatives, such as a residential course, would have cost the council £100,000.
Mrs Mahony, 43, was bewildered by the local authority’s refusal to continue with ABA.
She said: "There was a lot of opposition to it.
"The council felt that they were the professionals and they knew best. But we just weren’t prepared to accept that."
As the law stands, local authorities have a duty to provide proper education to all children, especially those with special needs.
Each parent can request a "record of needs" - a legally binding document which sets out how best to help the child’s development.
Lawyers for the family successfully argued that it was illegal for the council to withdraw funding and alter the record of needs without conducting a proper review.
Lesley-Anne Barnes, an Edinburgh-based lawyer who specialises in education and represented the family, said: "The parents were saying that if Lewis was taken off the programme there would be a serious risk of him regressing. The court accepted that the review was unlawful.
"It is an area where it is very difficult for parents to challenge ... and this family is among the first to do so.
"The councils have had free rein and the law is very much weighted against parents.
"But education law is a very new and up-and-coming area, and more people are becoming aware of their rights," Ms Barnes added.
Last night a spokesman for West Lothian Council said a review was under way.
"We are aware of the Court of Session decision, which we respect," the spokesman said.
"We will now be carrying out a review of the situation.
"In the meantime, we will take steps to ensure the educational needs of this youngster are met."
Last month politicians backed calls for a new medical unit in Scotland, dedicated to the treatment of autism.
Action Against Autism (AAA) submitted a petition to the Scottish parliament requesting the unit as well as funds for research into the treatment and causes of the condition.
The charity claims that Scotland does not have the expertise to help those suffering from autism, which forces parents to travel abroad to get the help they need.
Campaigners believe that Scotland is facing a crisis, with the number of cases of autism rising from one in every 2,500 of the population to one in 166 over the past ten years - an increase of 1,600 per cent.