Park the emotion, we need brave politicians in disability education

Usually the only people who have a problem with the ‘labels’ ASD or ADHD are people who are so prejudiced against disabled people that they can’t face the truth, writes Victory White

f there’s one thing which drives this mother of a disabled child mad it’s concern that kids with special needs should not be “labelled”.

Mostly you hear this concern from witless hippies. But at the end of last month, it was the turn of the Department of Public Expenditure and Reform to warn against the “unnecessary” labelling of children as a tool for accessing services.

By “labelled” do we mean “diagnosed”? If so, goodness me, I understand. How disastrous to have a diagnosis for your disability. It might mean you understand what’s wrong, have some idea what might make it better, and have evidence to support your claim for help from the State.

If the rise in autism diagnoses is the cause of the greatest concern for the department, as they say it is, I have news for them. Taking the autism “label” off autistic kids won’t make them alright. It will just mean they have other labels, such as “weird”, “bold”, “thick”, or “mean”.

No parent wants to hear the word “autistic” but lies hurt more than the truth. If a kid has ASD or ADHD or any of the many disabilities for which diagnosis is not simple, a diagnosis at least frees the parents from the “bad parents” label and makes the treatment path clearer.

Usually the only people who have a problem with the “labels” ASD or ADHD are people who are so prejudiced against disabled people that they can’t face the truth. In the Department of Public Expenditure there may be other concerns at play, such as affording an exploding bill for special needs education, which at €1.68bn now accounts for a fifth of the whole education budget and more than the whole budget for higher education.

It seems the Department of Education is about to roll out a new way for kids to access the extra services of a special needs assistant (SNA) or a resource teacher in mainstream education which will be based on needs, not diagnosis. Why the department thinks it’s going to allocate educational resources more fairly than health professionals is an open question.

When it comes to allocating resources to special education we need more science, not less. I don’t believe there’s any such thing as an “unnecessary” diagnosis. With-holding diagnoses is not going to help anyone. The exploding cost of special education is down partly to the fact that the State has had a lot of catching up to do over the last 20 years, and partly to the fact that we allocate our resources emotionally, not scientifically.

Every time I write this I get pilloried as the enemy of kids with special needs. But resources are not limitless and it was inevitable that one day we would be faced with “alarm” at Government level and a stupid suggestion to limit costs such as avoiding “unnecessary” diagnosis.

The real problem is that we have approached special needs education politically and ideologically. We have committed to “mainstreaming” kids who are too disabled to benefit or whose disability requires a specialist environment — as is the case with those autistic kids whose sensory systems are too easily over-loaded.

To facilitate this political agenda we have relied too much on employing SNAs: Between 2011 and last year, there has been an 83% increase in the number of SNAs assisting kids with ASD in mainstream schools, with the numbers going from 2,742 to 5,041.

The minimum educational requirements for being an SNA are three Ds in the Junior Certificate or equivalent and a Fetac Level 3 qualification. They are meant to be there to help kids overcome physical and practical barriers to accessing the mainstream curriculum.

They are not meant to be there to provide an alternative curriculum for a child who needs one. That’s not to say some of them don’t manage just that. But they are neither paid nor trained to do this. And if a child does not have the intellectual ability to understand anything that the teacher says, having a kind SNA sitting beside him will not make him understand.

I know a few highly intelligent kids with mild autism who have progressed from primary to secondary in mainstream, doing very well with devoted SNAs. I also know kids with ASD who survived primary with an SNA but bombed out of secondary, either because the appropriate supports were stripped away because the child was meant to be “cured” or because no support would have made the environment appropriate.

Kids with a serious sensory processing disorder need a small class and a curriculum tailored to their specific needs. Instead all we hear, endlessly and mindlessly, is the political correct mantra that virtually any disabled child can be rammed into mainstream if enough support is given. Outcomes are never measured. The question has to be asked who is being served here, the politicians who can appear gracious, Siptu, and the teachers’ unions, who are securing more jobs, or the kids themselves?

I have long said that special needs kids are treated like political footballs but I’m changing my metaphor now to say they’re being treated like fresh water. Just as our fresh water continues to be polluted because spineless politicians give into populism, so our special needs kids continue to get, not what they need, but what politicians can be seen to give.

Where is the measurement of the success or failure of kids with different disabilities in mainstream? Where is the measurement of the success or failure of the one-to-one Applied Behaviour Analysis system in the case of each individual child who receives it?

When are we going to see an end to July Provision as it stands which last July provided 5,349 primary school teachers to the homes of kids with autism or certain intellectual disabilities two hours a day for a month when most of them need their social skills developed in group settings and access to activities which could be provided by SNAs?

When are we going to see an end to the meaningless assertions that “early intervention” means kids with disabilities such as ASD will stop being disabled and spend the rest of their lives repaying the cost of their education on a 52% tax rate?

It is true, as Minister for Education Richard Bruton said last week, that, “during the worst years of the crash, investment in special education was not only rightly protected but it was significantly increased”. The reason for this is that Irish people care so much about special needs kids that they are every politician’s favourite populist cause. It would be a brave politician who would suggest unpicking some of the supports we have provided, even with the backing of sound scientific evidence.

But it is brave politicians our kids need or they will end up as the kids with the disability that has no name.