Why we should march in support of disabled people over €10m cutbacks

THERE’LL be a protest outside the Dáil this afternoon.

I hope it’s massive, that thousands of people turn up to show solidarity and support. And more than that, to make their anger clear.

Perhaps the protest, and the anger, should be about the €600 million we paid out yesterday to the bond-holders in Anglo-Irish Bank, who gambled heavily and will get all their money back. But it won’t be. It will be about €10m instead.

The protest will be led by people for whom protesting is usually very difficult. Getting there will involve overcoming a lot of barriers. But for many of them, that’s what daily life involves anyway. Getting over barriers. A lot of the barriers and obstacles they have to overcome are put there by the rest of us — physical barriers sometimes, but attitudinal ones more often.

They are people with physical disabilities. You know them, or some of them anyway, because we’re all hoarse from cheering them on in the Paralympics. We admire them enormously when they overcome their disabilities to bring honour and respect to their country. We marvel at their strength and grace and courage. And then we cut off the supports that mean the difference between life and death for them.

They are people who can’t rise and wash and dress without support, who can’t leave their homes without support, who can’t hold down a job without support. It’s not, in any case, because of a lack of ability. It’s because of a disability.

For thousands of younger people with a disability, family is the main support. As they become adults, family is less of an option. That’s when they need our support. And by “our” I mean us as a community.

Stephen Daunt is a journalist with Newstalk. He has a disability that affects him in all sorts of ways, but not in his ability to work and certainly not in his ability to write. He wrote a blog the other day (you can find it on the Newstalk website) that quoted the words of Shakespeare’s The Tempest: “O wonder! How many goodly creatures there are here! How beauteous mankind is! O brave new world that has such people in’t!”

His blog was about the opening ceremony of the Paralympics, and especially about the wonderful dancer who starred in the show. David Toole describes himself on his twitter account as being slightly grumpy, with a weakness for champagne. He is an extraordinarily graceful and athletic dancer, and was born without any legs at all. There’s a short YouTube video about him called “How to dance without legs”, which is simply astonishing viewing.

But Stephen, as well as admiring Toole’s amazing grace, was comparing him to what he called “the grubby, penny pinching burghers of HSE central who want to lock you in and tie you up as they rob you of the dignity and your choice to live your live as a rock n roll star”.

He was talking about the decision of the HSE to cut €10m from the Personal Assistance hours available to support and enable people with disabilities, not necessarily to become rock stars, but to live ordinary lives. That decision takes immediate effect, and will be the subject of this afternoon’s protest.

As we all know, that decision was contained in a list of cuts announced the other day by the HSE, under the ironic heading “Maintaining Services and Managing the Finances of the Health Service”. Of all the draconian cuts in the HSE statement, it was the worst by far.

And it was made even worse by the way in which they attempted to disguise it. “€10.0m through the reduction of Personal Assistant hours from the current €1.4bn budget for the provision of disability services” — that’s what the statement said, as if to suggest that this was a tiny cut that would have little practical effect.

In one sense, though not the way the HSE means it, it is a tiny cut. According to the revised Book of Estimates, the total budget of the HSE is €12,160,933,000. This saving represents less than a tenth of 1%. So taking €10m out of a budget of €12bn will have no effect whatever on the finances of the HSE.

But the HSE knows well that a cut of €10m will mean devastation to a lot of lives. Suzie Byrne, probably the best advocate for people with disabilities on our island, estimates that they have actually cut 470,000 hours of support. (Added to the 600,000 hours of home help hours taken away from frail elderly people, who save the State a fortune by living independently at home, that’s a million hours altogether.)

I have nothing but sympathy for the challenges faced by the HSE. It represents a bad political legacy from governments that wanted nothing to do with the very idea of accountability for health care. The people who work within the HSE struggle daily with a system that is virtually unmanageable.

But it is utterly unacceptable that people who need basic support to lead lives of ordinary dignity should have to pay the price for this. As a matter of fact, people with disabilities should not be accounted for in the health vote in the first place. They’re not sick people, and they should not be the responsibility of a system that only knows how to prioritise illness.

THERE is of course another issue in all of this, and that’s the politics of it. How is it possible that a decision like this can happen without any discussion whatever at Cabinet level? I can fully understand that decisions to cut back on overtime, or the use of agency staff, no matter how unpalatable they are, can be regarded as operational matters, to be taken at the broad management discretion of the HSE.

But a decision to deprive people of service is a policy one. It’s impossible to imagine that the HSE would, for instance, close down a major hospital, or decide to start charging for basic services, without a Cabinet discussion and decision. But it seems clear that no-one at Cabinet was informed that people with severe physical disabilities are suddenly to be deprived of basic services.

In fact, in one of the papers at the weekend it was reported that the Minister for Health is indeed considering a proposal to start means-testing people for some really basic services, like speech and language therapy and occupational therapy.

These are therapies that are absolutely vital to people, for instance, who are recovering from strokes or dealing with the onset of dementia. For 40 years or more they have been regarded as a right based on need. If in future they are to be seen as something that must be based on income, that’s a fundamental policy shift too.

Right now though, people with disabilities are facing a cut that crosses the line of civilisation.

It’s suddenly not enough for us to cheer for them at the Paralympics, or to welcome them home with civic receptions before we take their support away.

We have to fight for them at home. And the fight starts this afternoon, outside Leinster House.