OPINION:IT'S A terrifying picture, the "autistic kid left to fend for himself in the classroom" out of "mere cruelty" in a society which has, in truth, plenty of wealth to resource him.
But I don’t believe, as does Fintan O’Toole by the evidence of his column last week (“Rich enough to sustain a decent society”, June 7th), that this State has given in to “mere cruelty” in how it treats its vulnerable. I’m sure the autistic kid of which O’Toole wrote is a real one.
The care of autism is particularly patchy because so-called “spectrum” disorders have only been widely diagnosed since the 1990s and we are still in “suck it and see” mode as far as treatment is concerned.
Autism spectrum disorders were still diagnosed as schizophrenia in France until 2004, when lobbying by parents finally gave results. It seems to be always lobbying by parents which moves things on. As is only natural, the parent lobbying for his or her child only sees that child. The problem is that the media then pick up on this child’s story as the only one. Straight away we are in to Tiny Tim territory. This may lead to autistic children getting more resources, but not necessarily to their rational allocation.
Many autistic children in this State get a lot of resources. My own son Tom, who has an autistic spectrum disorder, is picked up every morning by a school bus which brings him to his special school.
He never has more than six in his class, with a teacher and a special needs assistant. He also has access to a social care team and has about an hour of one-to-one tuition every day. Tom’s school is my EU-IMF programme. It’s why I don’t want this economy to shatter and collapse. It’s where I know we are not a cruel people. It’s a large part of the stake I have in this society, and it is, I would argue, because of stakes like this that more people haven’t been demonstrating against the State during the financial crisis.
In July, when school is out, he gets 40 hours of one-to-one tuition in his home from a primary school teacher. This tuition has never been evaluated and only a parent’s signature on a form confirms it even happened. He is enrolled in a treatment programme, with speech therapy and occupational therapy, but he certainly hasn’t had enough of either. I am aware that vast resources are spent on him every day. This is on top of the domiciliary care allowance of €309.50 a month I get because my child’s needs are “substantially in excess” of an average child. My child benefit, four children, is €777.50 a month.
I am all for the strenuous taxation of wealth and I agree that disabled children deserve the highest priority. But we must also count what we are spending already on children and ask how well it is doing the job. When the children at the bottom of the heap must be protected, how can we justify paying out benefits at the same rate to one and all?
Tax individualisation is meant to build women’s financial autonomy, so no one wants to go near it. But how fair is it to penalise a parent who can’t work outside the home due to care responsibilities for children with special needs? Cúram, the parent and carer NGO, last year calculated a worst-case scenario income gap of more than €7,000 a year between a family with one parent working and one with two, due to tax individualisation.
It seems we can’t even have the discussion about changing this. If we did and then taxed all benefits, we could make our taxation system genuinely redistributive to children with special needs. The vulnerable require the most protection and no one is more vulnerable than a disabled child.
It is time for an honest and serious discussion as to how we are going to protect them, not one which starts by casting the State as Scrooge.