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| Mon 3 Mar 2003 |
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| Christine Mahony with her son
Lewis, whose pioneering treatment for autism was withdrawn by the
family’s local authority, resulting in a legal challenge. |
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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.
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