Scandal over neglect of intellectually disabled must be tackled urgently

I fully realise that in your position, you don’t hold the purse strings — the final decisions are made by the minister for health and the Government. But I’m asking you to make sure they know there is a scandal being made here. It is inexplicable and entirely indefensible. It is a scandal of neglect that affects a tiny group of people and their families. Its dimensions bear an uncanny similarity to some of the scandals of the past, because it arises entirely from public policy decisions that are all about doing things on the cheap.

While it was intended as a personal piece, I was also trying to say something about Down syndrome and intellectual disability generally — the potential that people have, and the strides we still have to make to ensure that resources and policy are all they should be.

As you know better than most, minister, we’ve just been through a period where, as a society, we’ve apologised for some of the scandals of the past. You’ve led the way in acknowledging the role of public policy in what happened to children in religious institutions, to women in Magdalene laundries. Our leaders have made solemn promises that we will never allow these things to happen again. We’re a more compassionate society now, we’ve been told. We won’t tolerate the mistreatment of defenceless people, especially at the hands of the State. But it is happening again.

The facts are that a small group of people with an intellectual disability find themselves each year in a constitutional trap. The worst thing that can happen in their lives happens — they become 18. At that moment, thanks to the infamous Supreme Court Synnott judgment, they lose their constitutional right to an education.

In effect, that means that the Department of Education, which had been responsible for funding those elements of their care that go towards an education, ceases to have any responsibility whatever, and hands them over to whatever other State agency will fund their care from now on. Exactly the same people, exactly the same needs, but one government department can wash its hands of them — and does so with instant effect on their 19th birthdays.

The same service providers who have been providing care and development for years, now have to find funding for that care from somewhere else. The “somewhere else” is, of course, the HSE. And year after year this takes the HSE by surprise. Every year all sorts of scrabbling around has to be done, and eventually some money is found somewhere to fill the gap in services.

This year, however, the well is dry. The HSE has already imposed a cut of 1.2% on the block grants paid to service providers in respect of the many thousands of other people with an intellectual disability for whom they also provide services. Unless the service providers can find something from within their own resources — some can, some can’t — then the people involved will simply be put on a waiting list, or given a partial and inadequate service.

These are people who in many cases cannot communicate, and who have to depend on others for basic care. In some cases they are people who have to be fed intravenously, who simply can’t cope with upheaval and change in their surroundings, whose lives have developed by access to routines that make them comfortable. Parents are making superhuman efforts to cope with this situation — but there will be some who simply can’t.

And here’s the thing. The people affected most this year are those with severe, and sometimes profound, needs. Of the 800 or so people who passed their 18th birthdays, it has been possible to make provision “within existing resources” for most of those who have milder needs. There’s about 100 or so people who need more support — and they have all been told to go on a waiting list.

The This Week programme on RTÉ has sought to highlight this situation over the past couple of weeks by talking to the parents of the people involved, and by investigating what exactly is going on. Joe Duffy has given some of those parents a voice too, but very few other voices have been heard in the media. So it may well be the case that people generally believe there is no real problem. I may even have helped to create that impression myself by writing about someone I’m really proud of.

But you know there’s a crisis, minister. And you know if it isn’t addressed it will be a scandal for which others will have to apologise in the future.

One of the things that always characterised the scandals of the past was the language used to cover them up. There are strong hints of that same kind of language in some of the official statements about this crisis. The correspondence uncovered by the This Week team uses phrases like “no overall reduction in the quantum of disability services this year”. A statement from the HSE says: “In ensuring that the overall disability budget is used to best effect, changes in the blend of service providers may be required, based on individual costs and efficiencies, to ensure that the maximum number of people can receive the services they require”.

It’s gobbledegook, and everyone knows it. Costs and efficiencies is corporate speak for cuts in services. To your credit, in your own correspondence with parents that I’ve seen, you’ve been honest and to the point — it’s about money and the moratorium on recruitment. But actually, if the service providers had the money, they could be really challenged to step up to the mark.

We know enough about the past to know where thresholds of decency are, and how they can be crossed. And it would probably cost about €20m, give or take, to ensure that no threshold is crossed now. Even in our current financial situation, €20m is nothing.

Minister, I know you’ve no interest in defending the indefensible. But you know it wouldn’t cost much extra to address these needs, and I think you should be demanding it from your colleagues in government. I think you should spend it on providing decent services for the single group of people in Ireland who are most defenceless and most voiceless. I think you should be saying to your colleagues, “there’ll be no scandal on our watch”.