Disability is the last frontier in inequality — and Leo should get that

Increasing SNA numbers is a start, but the begging-bowl mentality remains for children with disability, writes Sarah Caden

WE’RE not supposed to dwell on Leo as being part of two minorities, but parents of children with disability dare to feel hope when someone like him is at the helm.

We live for people who get it — and now we have a Taoiseach who, in his inaugural speech, said that there was a time when he didn’t dare dream of scaling the heights if he lived as his true self.

Leo knows how it is to feel that the world isn’t yours for the taking, that avenues are closed off to you, that you are excluded — so we hope that he can empathise with our kids.

Just as when Finian McGrath became Minister of State with Responsibility for Disability Issues, we could not help but hope, given his experience as a parent of a child with a disability.

People who get what it is to be discriminated against are our hope. Our children — young children, teenagers, or adults who will remain dependent forever — are the last minority that it’s OK to discriminate against.

They put up with scraps from the table, they suffer being treated like charity cases, they barely dare to hope to realise their dreams. Or even have any.

Maybe it shouldn’t be this way. Maybe we should expect that everyone understands and gets it; but that’s not how it is.

Because if everyone got it, then last week’s outcry followed by tardy action on the allocation of Special Needs Assistants (SNAs) would never have happened.

Yes, of course we are grateful for Richard Bruton’s announcement last Wednesday that an extra 975 SNAs will be allocated this year. They are needed. This is not the Government being kind or charitable; it is attempting to ensure, as Bruton said, that every child who needs an SNA will have access to one. We are grateful — but that rankles.

It rankles when Leo, who is prone to a snippy retort, told Mary Lou McDonald in the Dail last Wednesday that there are more SNAs than there are gardai. That smacks of “are these people ever happy? Is anything ever enough for you?” Well, no.

Wednesday’s announcement of extra SNAs was welcome, and yet the SNA plans to ballot for industrial action in September. Because Wednesday’s announcement doesn’t change the fact that many of them have no idea if they have a job in September. They don’t know how many hours they will have. They don’t know what child or children they will be supporting.

If that doesn’t speak of a general disrespect, not only for the SNAs but the children, too, then I don’t know what does.

My child left senior infants last month to begin her summer holidays and it was an emotional goodbye with the SNA to whom she has had access these past two years.

A child does not have an SNA, it should be remembered. They have access to an SNA. Each school gets allocated a certain number of hours according to the number of children with needs and the size and status of the school. Then the school must divvy up that allocation as best it can — children often share an SNA and the SNAs often move between classes.

It’s not like having a PA, though it’s neater and nicer when we portray it that way. The difficulty of sharing out that allocation is part of the reason why knowing what that allocation is is crucial before school ends for summer.

My child and the SNA she has worked with might be together next year, or they might not. There will be some support for my child, I know, but what that support will be I don’t know. She has Down syndrome, she won’t be left adrift, but that reassurance comes from the school — a place full of goodwill with a principal who gets it.

The reassurance does not come from the State, because this year, as with the past three school years, the SNA allocations were not given to schools before the holidays started.

I have friends who cried with the SNA as schools broke up, shattered as they were by uncertainty. I heard SNAs this week talk about not daring to take a summer holiday with their own children for fear that they would not have a job or income in September. It’s no way to live. And it’s far from equality.

We all pat ourselves on the back that schools are so inclusive now and kids like my daughter can sit side by side with typical kids, but God, you are never allowed to forget that they’re only there thanks to everyone’s goodwill.

My older daughter goes in to 4th class in September. Regularly in the last year people have asked me where will she go for secondary school. Not one person has included her younger sister with Down syndrome in that question. And when I answer, always saying, “I have them both down for X,” I have been met with many surprised responses.

Because whether we admit it or not, there is the attitude that access to primary mainstream is a nice, sweet thing do to for those children. It’s a gesture. Secondary is the big leagues and not for the likes of them. And, well, after that, most young adults with disabilities, no longer quite so cute or easy to patronise, are just set adrift.

And the thinking seems to be that enough has been done to get them that far — sure haven’t we been great to them?

The attitude to SNAs speaks of that. They are regarded as good people with good hearts who do good work. And they are. But that attitude is what sees them taken for granted. We regard them benevolently, as if they’re making it possible for our children to be in mainstream school out of the kindness of their hearts.

They’re not. It’s a job. They expect, like everyone with a job, to see respect for their work in the shape of pay and security.

But they are also the last people to make a fuss because they know that without them those who are even more vulnerable — the children — will suffer.

But the SNAs have been pushed too far.

Leo Varadkar said last Wednesday that the situation where schools and SNAs and parents and children are left hanging for the summer will never happen again. While making his additional-SNAs announcement, Richard Bruton said that in future, decisions about allocations would begin in the autumn/winter and not in June — a situation which has led to years of uncertainty in the summer months.

He added that the National Council for Special Education is devising a new model to assess the needs of pupils and schools and how the supports are allocated to them. He described the new model as more “robust”.

Seven years as a parent of a child with special needs means I somehow hear the word “robust” with a degree of fear.

In my experience “robust” changes to models of care often boil down to cutbacks.

But in Leo’s Ireland, perhaps, it’s important to hope and to dare to dream. In his lifetime, Ireland changed and allowed him to be himself — to be the Taoiseach. He gets it, we hope, the crushing, life-draining experience of feeling other and excluded and always on the back foot.

What happened last week was good. But for us to truly believe that Leo gets it, we’ll need to see much more before our children feel truly valued and included.

‘Access to an SNA is not like having a PA, though it’s nicer to portray it that way’