Our daughter Jessica was diagnosed - in December 1999, after we took her to Britain - as suffering from autistic spectrum disorder. This was just shortly after her second birthday. By June 2000, my wife and I had come to the conclusion that if we did not provide her with the help she urgently needed, she would simply fall through the giant holes, not cracks, in the education and health systems of this State.
We considered ourselves lucky in that we had managed to have an educational physiologist in Britain assess Jessica's needs and he firmly recommended an ABA (Applied Behaviour Analysis) model of education. We asked for support from the Department of Education in funding an ABA programme for her, but it refused.
We re-mortgaged our family home and started Jessica's ABA home programme, while, at the same time, I took a court case against the State for failing to provide her with an appropriate education.
In April of this year, I met the Minister for Education and was relieved that he appeared to understand our problem and was delighted to be offered the opportunity of submitting a proposal to establish an ABA model of education that would cater for Jessica's needs and the needs of 11 other children like her in the Kildare area.
While I have been a clear critic of the Department of Education, they have followed through on the promises made in our April meeting and on the October 1st, we opened a fully-funded ABA facility called "the Saplings".
Because of the public stance I took in the media, I was contacted by parents from all over the country and as far away as the United States. I am now the communications officer of the Irish Autism Alliance, a newly formed national group representing numerous established autism groups.
As the chairperson of the Saplings, I can see how far the Department of Education has come to try to understand and support the wishes of the parents of children with autism. However, when someone contacts me desperately trying to get services for a dependant with autism, I have to stop and ask the question: Is the Department simply dealing with high-profile court cases as they arise without dealing with the core of the problem?
There are still a large number of parents who want an ABA-style education for their children, and there are others who, while the education system is working for their children, lack external support and services.
The Department continues to hesitate over a proven method of education for children with autism that bases its approach to teaching on the scientific study of behaviour. The only reason that I can see for this is that ABA programmes are in the short term more expensive to the run than other models of education.
To me, this seems a flawed approach to education.
The Mental Health Foundation in Britain produced an economic study in April 2000 that showed it cost £40,000 sterling annually to care for an adult with autism in a residential unit, while only £7,000 sterling was being spent annually per child on early education.
The report went on to recommend that £25,000 sterling be spent each year on intensive early intervention for the first three years after a child's diagnosis. The Saplings is currently running 12 ABA programmes at a cost of £22,500 per child per year. The Department is also providing us with funds to cover buildings and day-to-day running costs that I believe would have been incurred in any educational model.
Unfortunately, recent Government figures have shown a dramatic increase in the number of children being diagnosed with autism. My understanding is that over the last six years, we have seen a 300 to 400 per cent increase in the number of children being diagnosed with this condition. On this basis, I believe that if the Department is to plan for the future, they should immediately implement a post-graduate course in Applied Behaviour Analysis within this State. It would naturally follow that other teaching methods and therapies should also be supported.
The Minister recently stated that he was funding the three ABA-specific models to the tune of £9.67 million in 2001; this, I believe, was an £8 million error as the true figure is in fact £967,000 - or approximately £18,000 per child per year.
In relation to older children and adults, it seems only right that if a teenager or adult has not been given the appropriate help as a young child, they should be entitled to this help retrospectively. If, as the Supreme Court decided, primary education is only a guaranteed up to the age of 18, maybe we need a have a referendum to ensure that a primary education is available to all disabled persons for as long as they can benefit from it.
I believe that receipt of a primary education should be based upon need. When I was first introduced to Jamie Sinnott, subject of the Supreme Court case, in October 2000, he was withdrawn and seemed very unhappy. I met him again recently and while, like my daughter, he is clearly disabled, he met me at the door of his mother's house, reached out and shook my hand and smiled at me in the way you would expect from a shy child. He has been taught this skill using the principles of ABA and while I have known Jamie for a year, it felt like the first time that I had ever met him.
