Deserving better

James is due to finish in Primary School this June. He is 14, and is coming to the end of an additional year that he was able to spend at the ASD unit in St Columba's School in Douglas. The team down there, led by Carmel Reid and the Principal, Tom Wilkinson, have been beyond brilliant with our boy for the past number of years, and he has thrived in their care. They know exactly what he can do, and what he can't do, and have brought out the very best in him. We cannot thank them enough for all they have done. 

James will be sad to leave St Columba's, but is also looking forward to starting secondary school. There, however, lies the problem. Readers not familiar with Special Needs education might be shocked, or at least surprised, to read that with only weeks to the end of his primary school career, we, as yet have no suitable place for James in a secondary school. Yes, that's right. No place. With only weeks to go.

We have had a suggestion, an offer of sorts, via his SENO (Special Educational Needs Officer) but it is completely unacceptable on several grounds, not least of which would be a 40 mile round trip every day. Bearing in mind that we live in Douglas, you might well ask, “Why 40 miles?”, and then I'd have to tell you that the distance, crazy as it is, is not even the most significant reason we have said "No". There are several others. So have the parents of a number of other boys due to leave St Columba's, who have refused this utterly unsuitable offer.

We didn't have to fight for Jemma to get a secondary place when her turn came. All we had to do was put her name down in time, fill in the paperwork, and she was able to go to the school she wanted. As far as I'm concerned, her twin brother is entitled, as a citizen of this State, to the very, very same privilege.  He will not be fobbed off with second best, just because he has a little disability that affects the way he learns things. Not over the rotting corpses of his mother and me. When I addressed a number of conferences and dinners on ASD education as far back as five years ago, I warned the authorities that this day would come, and that I would be 'on their house', when it did. Well, it's here, so am I, and so is his Mam. If they think I can be a pain in the ass, they have never seen the Queen Bee on a mission!

But, as Neil might say, “enough of me”. There are literally dozens, if not hundreds of parents in a position like us. There's a severe shortage of proper, appropriate educational facilities for children with a Special Need in the Cork area. Nationwide, the figure runs to thousands. On Tuesday, some of the  parents mounted protests here in Cork, and in Dublin.

They were demanding in particular, the reversal of a particularly cruel cutback in an allowance called the 'DCA'. The Domiciliary Care Allowance is a small but welcome payment made to a child who needs extra care and support. The cutback involves parents getting a letter, from the Department of Social Protection, to say their child's allowance is being 'reviewed'. It's almost invariably followed by another, saying the allowance has been stopped.

Now, here's what the average reader might not know. That review, and the decision to stop the DCA, is made without anyone meeting, much less medically examining the child! Yes, you read that correctly. An allowance paid to a child with an illness or disability is summarily cut off, by an official at a desk, without so much as a medical examination. Without an examination. What would you think of that, then?

I ask what you would think for a reason. I'm putting all this stuff out there because I'm convinced that there's a huge number of ordinary, decent, right-thinking people, who don't know about it. They don't know about it, because they don't need to know about it. It has nothing to do with them. I fully understand that. However, thanks to my space in this newspaper, I can tell people about it, because I want them to know what parents like me and others, and boys and girls like James are having to endure. This is what they have to endure, just because, as I said, they have a little disability. If you are one of those people reading this, and it's doing your head in – please don't just finish your cuppa, drop the paper, and forget it. We, the parents need your help, and so do our kids. They are being wronged. They deserve better.

If it takes our last breath, they'll get it, too.