Thursday 21 February 2019

Tears of joy shed as minister gets message on the 'mild' child

Noise around Down syndrome injustice got very loud recently, and this writer in particular is delighted it was heard

A photographic exhibition in the grounds of Dublin Castle to mark World Down Syndrome Day on March closes on Tuesday. It will then move to the grounds of Dun Laoghaire library until the end of April.
A photographic exhibition in the grounds of Dublin Castle to mark World Down Syndrome Day on March closes on Tuesday. It will then move to the grounds of Dun Laoghaire library until the end of April.

Sarah Caden

On Wednesday morning, as I arrived at my older daughter's primary school, a triumphant school principal came out of her office to greet me. She had the form printed off already, all set for me to sign and apply for the two-and-a-half hours of resource teaching that my younger daughter, Mary, will now receive when she starts school in September.

The principal could barely believe that the forms were online so quickly, only the morning after Minister for Education Jan O'Sullivan had announced the interim measure of offering these supports to children with Down syndrome and a mild assessment.

I could barely hold back the tears. Over a form. A Government form. A boring old bureaucratic form. A form that I held like a precious prize all the way home. A form that is a precious prize. It's a happy day.

It's not a day to nitpick over what the minister means by these hours as "an interim measure". It's not a day to bemoan what more could have been done. It's not a day to lament the fact that once you have a child with a disability, you feel like you live with a begging bowl in your hand. It's a happy day.

In February, Brendan O'Connor wrote in the Sunday Independent about our Mary's pre-school assessment as having a mild intellectual disability and what this meant. He explained that she would be discharged from the HSE services that provide crucial speech, occupational and other therapies, but also provide access to a community of her peers with disability.

And he explained that, as it stood, when Mary started school in September, she would not qualify for resource-teaching hours, purely because of her mild assessment. If she had Down syndrome - which she does, it isn't going anywhere - and a moderate assessment, she'd get resource hours, but the mild excluded her. Down syndrome, all by itself, was not enough to qualify her for help under the HSE or the Department of Education.

And at the end of the week, Down syndrome, all by itself is not enough to get their supports, but last week, the minister did something good and she deserves credit for that.

I wasn't sure that anyone would care about what Brendan wrote. I know people are fundamentally decent and caring, but everyone has their own problems. And I thought that this niche issue might speak only to the other people whose kids with DS had a mild assessment, or other people with children with DS. I was wrong. The best kind of wrong.

The response to Brendan's piece was astonishing. For a start, people in general were astonished that our kids with DS are graded like potatoes into mild, moderate and severe before they start school. People assumed, because they are fundamentally decent and caring, that children with DS are supported in school, because they have DS.

Even friends who have children with DS were shocked to see it spelt out plainly before them, and double-checked with me that I was sure that Mary wouldn't get any resource hours at school, that I was sure she would no longer have access to the service's friendship club, just on the basis of being 'mild'. I was sure. And people were sure that this was wrong.

The Sunday Independent got behind this feeling of something being wrong and rotten. It went big and it went bold with it. The Sunday Independent made a campaign of it.

When you have a kid with a disability, you grow accustomed to a feeling of invisibility. This is, in part, due to a basic human instinct to shy away from what scares us. We don't like to think about death or illness or disability, so we kid ourselves that it won't happen to us. Disability, in particular, happens to other people. I thought so myself, until it happened to my little girl.

I cried when I heard then Minister for Education Ruairi Quinn, a man I had always voted for, say on the radio that he was "blessed" not to have a child with a disability in his family. It was probably a slip of the tongue, but it was one that suggested to me, who was then a few years away from Mary's assessment, that he wasn't going to do anything for kids who came out as mild. And he didn't.

A parent who has campaigned for years on this injustice referred to Quinn as "arrogant", though she added that it wasn't necessarily he who never did the right thing by the 'mild' kids, so much as the government officials, who got used to a few parents making noise every year and who hoped it would just go away. They kicked the can down the road, promising major reform once all the relevant reports and studies and statistics had been collated.

But, in the end, it didn't go away. And O'Sullivan, to her credit, didn't try to make it go away. And women were on-side and made a difference. Fidelma Healy-Eames brought up the subject in the Senate, and Mary Mitchell-O'Connor, who has always lent an ear to people with disabilities, worked hard on this.

O'Sullivan, like ministers before her, met many parents of kids with Down syndrome before giving the go-ahead for an "interim measure" of 150 minutes per week of resource-teaching hours for children with DS and a mild assessment. She introduced it last week, in order that paperwork and teachers could be organised in time for children starting and continuing with school in September.

This is a start, which will "remain in place until such time as the proposed new model for allocating teaching supports to children with special education needs comes into force." She hopes that this will come into place within a couple of years. But putting something in place now is a good start and signs that the minister gets it, that she wants to understand kids with DS and their needs, is a massive leap forward.

You could argue that the campaign grew so big and so loud - with the likes of Marian Finucane getting the bit between her teeth on RTE Radio One, and Ivan Yates, Chris Donoghue and Jonathan Healy becoming impeccably informed and indignant on Newstalk - that she couldn't but listen, but I think that would be mealy-mouthed.

Maybe all any of us want in life is to be recognised and seen for what we are. What was explained to this minister, like ministers before her, is that children with Down syndrome gain enormously from attending mainstream school. They are terrific social mimics, who learn so much about behaviour and appropriate behaviour and how to function in the world from being around typical kids.

The more they can be supported and kept in mainstream school, the more they will be able to function meaningfully in the adult world. And any money spent on supporting them now will prove a saving in later years. In these past couple of months, people seemed to get that.

Last Wednesday, I had more than a few tearful phone calls and cried my way through more than a few email conversations.

One friend, whose child with DS is one year away from her assessment rang me three times between Tuesday evening and Wednesday afternoon. She was excited at first and talked about how she felt like this was a prize for everyone in our little group who have children with DS. Mary's assessment, she explained, felt like the first slamming of a door in all of our faces. When one child gets a knock-back, she said, it feels like a knock-back for everyone. So, a boost, whether your child is mild or not, is a boost for everyone. People at her daughter's creche were congratulating her like they, personally, had won a prize. It felt great. It felt like recognition.

And it's a boost for everyone, I believe, beyond the world that deals directly with Down syndrome. Because, what happened last week was the righting of a wrong. And not everyone can admit a wrong, but when they do and they right it, they deserve thanks.

So, thanks, Minister. And here's to the future.

Sunday Independent

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