For generations, disability in Ireland has been seen as the remit of charity, but people with disabilities have begun to rebel against this idea, writes Fergus Finlay.
Why should we even be surprised? This newspaper yesterday reported that the HSE had failed in its statutory duty to more than 2,000 children with a disability. Not for the first time, the Irish Examiner has led with a story that ought to shame the system.
But will it represent a long-term and sustainable embarrassment for the State? I’m guessing not. The HSE will put its head down, and, if pressed, will mutter something about resources. None of the families will have the energy or the resources to fight the failure of the State. And people with disabilities will continue to wait.
The Disability Act 2005 allegedly confers a right on every citizen with a disability to have their needs assessed. Despite a lot of gobbledegook, the act says it clearly enough in section 9 — if a person has a disability, he or she, or their families, can apply for an assessment of their health and educational needs, and that assessment shall be commenced within three months and completed without undue delay.
The act specifies that, at the completion of the assessment, there will be a statement of needs, and that it will be furnished to the person with the disability.
This is the single most dishonest and fraudulent piece of legislation ever passed by the Oireachtas.
The clue is in the short title of the act, a sentence that is supposed to describe what the act is intended to achieve. It describes an act to enable provision to be made for the assessment of health and education needs … and to enable ministers of the government to make provision, consistent with the resources available to them and their obligations in relation to their allocation, for services to meet those needs.
There are key words here. First of all, the act enables assessment, and it enables ministers to meet needs. But it doesn’t compel anyone. In fact, the only thing ministers are compelled to do in the act is to have regard to the resources available.
And that language about resources crops up about six or seven times in the pages of the act. But the bottom line is simple. You’re entitled to an assessment — if the resources exist to carry it out. Arising from your assessment, you are entitled to a statement that outlines the health and educational things you need. But these things can only be provided if the resources exist. You’re entitled to appeal if your needs aren’t met. But the person considering your appeal can’t find in your favour if — you guessed it — the resources aren’t available.
When the Disability Act was passed in 2005, it was the culmination of a long campaign by the disability movement to try to get some rights in law for people with disabilities. For generations, disability in Ireland had been seen as the remit of charity. Most of the major disability organisations, despite their immense funding and power, have charitable status and were set up in the first place to do charitable work.
Little by little, people with disabilities began to rebel against this idea, and to demand rights. The right to an education, the right to decent support, the right to have the resources necessary to climb barriers.
Eventually, the government of the day drafted a piece of legislation so phoney in its intent that it was obliged to withdraw it. The minister in charge, Mary Wallace, touted the bill as something that was capable of changing Ireland, but it was such a disaster that she essentially lost her job, to be replaced by Willie O’Dea.
Mr O’Dea began a process of negotiation with the disability movement that essentially wore the movement down to the point where people accepted that the Disability Act was the best that could be achieved. Mr O’Dea, never a man to undersell anything, proclaimed the bill as incredibly far-reaching, as leading the world when it came to the rights of people with disabilities — even though, throughout the bill’s 52 pages, the word rights never appears once. By the time the legislation reached the floor of the Dáil, Mr O’Dea had gone on to higher office as Minister for Defence, and it was his colleague, Frank Fahey, who introduced it. The most important piece of legislation in the past seven years, he called it. He said it had statutory rights and redress mechanisms, that were (he added) balanced with the competing rights of others.
In that original Dáil debate, Labour’s Kathleen Lynch described the bill as “shoddy, mean-spirited, badly written legislation”. David Stanton for Fine Gael quoted one legal expert as saying that it was possibly “one of the most convoluted, turgid, incomprehensible laws the expert had ever read and that its complexity was intentional and avoidable”. But it became the law of the land anyway. It took years to implement some of its provisions, and it has never been effectively reviewed (there were consultations of course, but no change was proposed as a result).
The entire episode represents a fundamental failure of will and courage on the part of successive governments. It’s as if there has been a fear that advancing, in a meaningful way, the rights of people with disabilities will bankrupt the state. And the consequence has been that the needs of people with disabilities has always played second fiddle.
That’s why you have the headline in yesterday’s Irish Examiner. Just around half of the people who applied for an assessment got it. And the vast majority of them would have ultimately received a statement acknowledging that they had needs. And the result of the process is that they would have been told to join a queue, and we’ll get back to them when resources are available.
Those figures, of course, take no account of the parents who haven’t applied for an assessment of their children’s needs because they know there’s no point. Forty years ago, the arrival of a child with a disability into your family meant only one thing. It meant you started a bureaucratic battle to secure the services your child needed, and that battle — for education, for speech therapy, for support in school, for training after school, for respite for worn-out parents, for residential services when they’re needed, for work placements, for support in the work place — that battle would continue for life.
The result of course is an endless queue for basic services, a system that is incapable of responding speedily and pro-actively, and lifetimes of dependence that can and should be replaced by much more independence.
The promise of the Disability Act was that it would replace charity with rights. It would ensure that preventative services, that could help to equip the person to climb the mountains they face, would be in place.
Other countries have managed to do it without breaking the bank. We pay lip service, and the Disability Act is the shining example of that – or perhaps more accurately the shaming example. We talk endlessly about equality in Ireland, and we’ve made great strides for people in other walks of life. For people with disabilities though, the struggle for greater equality remains the last unfought and unrecognised battle.
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