Happy 18th Tom, the State has just blown out candles on your fairytale

Happy 18th Tom, the State has just blown out candles on your fairytale
Kathy Sinnott with her son James in 2008. The Supreme Court ruled in 2001 that Kathy’s autistic and intellectually disabled son, was not eligible for primary schooling past the age of 18, has had crippling effects on intellectually disabled young men and women. Picture: Denis Minihane

The Supreme Court ruling in 2001 that Kathy’s autistic and intellectually disabled son, was not eligible for primary schooling past the age of 18, has had crippling effects on intellectually disabled young men and women, writes Victoria White

Please join me in wishing happy birthday to my son Tom, who has an intellectual disability and autism, and has just turned 18.

For this reason alone, his wonderful respite care has come to an end.

The respite staff gave him a lovely card and told him he’d be able to come back and see them any time he liked.

For the moment, he’s accepted this. I suspect, though, that when he gets back to school and sees other kids going to the respite centre, he’ll wonder why on earth he can’t go too.

He likes fairy tales.

Perhaps I can use the Cinderella story to explain to him that in this State, teens turn into adults on the stroke of midnight which heralds their 18th birthday, as magically as Cinderella turned from a princess to a servant girl.

Except I’m not sure his adult services are ever going to fit as well as Cinderella’s glass slipper. As yet, no adult service has been found for him.

I know I haven’t much to complain about.

My son is at least going back to school for a final year in September, while many intellectually disabled teens are unceremoniously kicked out of school when they turn 18.

This is despite the fact that 77% of Irish kids now start school at five rather than at four meaning they will leave school at 19 or even 20.

Free preschool and the growing perception that five is a better age at which to start school means 18 is no longer the watershed for our teens that it used to be.

Tom started school at five and a half with his neurotypical twin.

Had he been kicked out of school in June, as would have happened in many so-called “special” schools, he would have had one year’s less schooling than most Irish kids and a year less than his twin.

He needs more school than most kids, not less.

However like most “special” schools, his school is technically a primary school and can only keep a kid past the age of 18 by making a case that there’s nowhere suitable for that child to go.

The Supreme Court ruling in 2001 that Kathy Sinnott’s autistic and intellectually disabled son James, based in Cork, was not eligible for primary schooling past the age of 18, which reversed the High Court ruling that his educational provision should be based on his needs, not his age, has had crippling effects on intellectually disabled Irish young men and women.

It makes me seethe with anger to think that intellectually disabled young people are due less education than their so-called normal peers, not more.

It makes me seethe again to think that intellectually disabled young people’s rights are judged by the Irish State according to the perceived abilities of young people who are not disabled.

As the lobbying agency Autism Europe puts it: “The age of the disabled person is irrelevant in relation to the right to education.”

It is stomach-turning that the Irish State routinely judges people who may not even have achieved the mental age of most kids who start school as being ready to finish school.

This is not only ignorant, it is extremely hurtful to parents and carers and to some intellectually disabled young people themselves who would dearly love to have the intellectual ability of a “normal” 18-year-old but never will.

Contrary to the arguments of the Supreme Court in 2001, there is nothing logical about this practice.

Free primary education for most children ends at 12 or 13 years but special schools are categorised as primary schools in which the right to free primary education is arbitrarily extended to 18 years.

The High Court described the choice of 18 years as the cut-off point for primary education as “not necessarily illogical” but there is nothing logical about it.

Why is primary education cut off for for seriously intellectually disabled teens because teens without a disability can go to the pub, get married and vote?

A free secondary education is available at any age. Special schools for older children should be re-categorised as secondary schools, available on the same terms as mainstream secondary schools, because as things stand, intellectually disabled teens do not have access to the free secondary education to which all are entitled.

The Sinnott judgment points out magnanimously that it’s not a case of depriving intellectually disabled young adults of primary education, but that such education is not their right, under the Constitution. The relevant minister can grant educational provision to such adults under the 1998 Act on disability rights but doesn’t have to because the Constitution makes clear that children, not adults, are entitled to free primary education.

What if your ‘adult’ is still not toilet-trained, as was the position of James Sinnott at 23 years, when the Supreme Court ruled?

Is he then to be deemed “ineducable”, as the State argued in the case of the late Paul O’Donoghue in 1993 when it was submitted that “such efforts as were made to educate profoundly mentally handicapped children were of no real or lasting benefit to them”?

The High Court ruled against this pernicious nonsense and also against the State’s argument that it had no duty under the Constitution to provide education to this child because what he needed was not of a “scholastic” nature and was not primary education.

It is brutal to hear our State trying to argue its way out of providing educational resources to chronically disabled kids and young adults by using the “good money after bad” argument.

Why bother putting resources in when the outcome is still going to be bad, the State argues?

People can never be bad bets. In the Supreme Court ruling on the Sinnott case, James Sinnott is a bad bet on which the odds can’t be improved by means of education.

Education, says the judgment, should continue as long as progress is “discernible” which, in the cited opinion of professor James Hogg, makes a cut-off point of 18 years “not unrealistic.” I am no professor but I am a parent and as far as I’m concerned, there is nothing “realistic” about the State’s decision that an intellectually disabled young person can’t benefit from basic education past the age of 18.

The independence of the expert testimonies used by the State to argue its case is not in question but neither is the motivation of the State in its choice of research material to back up its case that James Sinnott had no further entitlement to education.

“To extend the obligation (to provide primary education) beyond the age of 18 years would permit any adult to claim a right to receive a primary education at any time in his life”, it was argued for the State.

So James Sinnott, my son, and thousands of the most educationally needy people in our society have a right to less education than young people of average intelligence because giving them what they need might cost too much?

Isn’t it high time we revisited the Sinnott judgment?

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