New agency needed to monitor standards in our health services

Aras Attracta is home to nearly a hundred people. It’s in Swinford in County Mayo. It has a website, part of the much larger HSE website.

According to the website, “Áras Attracta has a long-standing commitment to quality services and has successfully retained quality accreditation from Excellence Ireland Quality Association for over 14 years, one of the first statutory Health Services to achieve this distinction”.

(Editor's note: Since the publication of this article, Excellence Ireland Quality Association has pointed out that contrary to the website statement Áras Attracta does not hold current certification by EIQA as it was last assessed in February 2013).

Mind you, it says on the opening page that they are currently updating their web information, and even though there are links that are supposed to tell you about the staff of the place, the people who live there, and an advocacy group that works on their behalf, those links (at the moment anyway) don’t lead anywhere.

I’m guessing that when they do eventually update their web information, they may choose to reconsider the language about their long-standing commitment to quality services. Because Aras Attracta has now been the subject of a pretty shocking indictment from HIQA, Ireland’s national inspector and regulator of decent standards.

Some of the “highlights” of that report were in this paper recently (July 26). Fiachra Ó Cionnaith reported that the facility — which caters for 99 adults with intellectual disabilities — was regularly failing to feed them for up to 15 hours. Separately, he reported, gardaí have confirmed that an investigations is ongoing into an earlier sudden death of a resident of the centre in 2012. Francis Loughney died aged 72 at Mayo General Hospital, having been ill for five days at the centre but it is understood a HSE inquiry found he had not been seen by a doctor.

Fiachra went on to report that the concerns surrounding Mr Loughney’s death predated the separate issues raised in the HIQA report. These found some residents of the home were found to be underweight. When those being treated at the facility were fed, it was often by “spoonfuls of food in quick succession”, with meals found by the inspection team to be cold and left on “unheated trolleys”. The mealtime situation, which was described by a member of the inspection team as “distressing”, was uncovered during an announced visit by Hiqa officials to the site on February 26 and 27. The officials stressed that the issues “did not promote the dignity, choice, respect, or independence” of residents involved.

We live in a very different Ireland in 2014. An Ireland with a very a different consciousness. An Ireland where we have more compassion, empathy, insight, heart. That’s what the Taoiseach told us when he was apologising on our behalf to the Magdalene women.

But you’d wonder, wouldn’t you?

Because the really shocking thing is that Aras Attracta isn’t unique. It’s worse than the average, that’s for sure. But when you go to the HIQA website and start downloading its inspection reports, you very quickly discover that with very few exceptions, none of the service providers is fully compliant with the standards set out. The language is spare and often technical, with non-compliances listed as major, moderate or minor.

I know from my own day job how hard it can be to meet standards, day in and day out. But the level of non-compliance that HIQA reports is so common that I found myself wondering if HIQA is just one of those impossible-to-please organisations that set incredibly high hurdles. So I went back and read the standards again.

They’re actually pretty simple and straightforward. They cover things like dignity, choice, safety, social planning, staffing (including training). They’re what I’d want for myself or any loved one who needed care. They’re what you, and every other citizen I’ve ever met, want to believe is in place everywhere there are vulnerable people.

But they’re not in place. And there’s a reason.

Residential services, especially for adults with an intellectual disability, aren’t often provided directly by the State. You might well conclude, reading the report into Aras Attracta (one of the minority which is directly run by the HSE) that that’s no bad thing. In the main the State funds powerful and respected organisations, often with religious-sounding names and a strong religious ethos, to provide the services on our behalf.

For generations, the culture that dominated these services was one of care, containment, and charity. Adults with an intellectual disability, in my lifetime and yours, were often unwanted and stigmatised. Out of sight, out of mind – that was the core policy. If the religious orders hadn’t provided, nobody else would have.

Of course we’ve moved on from that. But family members will still report that the relationship between them and the service provider is one where there is an unequal power balance. It’s not good to complain, it’s not good to demand higher standards. You’re supposed to be grateful for whatever is provided.

Against a background like that, it’s hardly surprising that you can have a published set of standards that are based on a concept of rights and dignity, and the providers struggle to meet them. Because the system is not driven by standards, it’s driven by budgets and economies. It’s under-staffed and under-resourced, and the usual response to HIQA is to apply a lick of paint whenever a visit is announced.

The key is management. Just as in so many other areas of social policy, there have been dozens of reports into how to do it better. One report into what’s called “congregated settings” (Aras Attracta would be a good example) talked about how impossible it is to enable people to live with dignity in over-institutionalised surroundings. Another powerful report into value for money actually found that there are savings to be made in a policy shift that places more power in the hands of the user of the service.

But in the big miasma that is the HSE, reports like this are buried away. Intellectual disability is never going to get a management focus or a policy priority as long as it has to compete with all the other demands and crises that occupy the time of senior HSE management.

Aras Attracta is like one of the little scandals, bubbling under the surface. And unfortunately there are dozens of Aras Attractas. There’s no systematic abuse involved, just harried staff trying to cope with a complete lack of leadership and inadequate supervision and training. It’s what the policy makers, although they won’t admit it, regard as an acceptable level of neglect.

Every time a HIQA report comes out, they deal with the basics, and they hope nothing worse happens, to really focus attention on how we treat adults with an intellectual disability. Many of these adults are of an age where they have no family, or perhaps very elderly family, to fight for them. They depend exclusively on us for their care.

We shouldn’t be waiting for worse to happen. It was the bigger scandals that led to the HSE losing its statutory responsibility for the safety and welfare of children. That’s the template we should be following in relation to disability – a new agency, broken away from the HSE, and driven by standards and public accountability. That’s the only way to begin to get it right, for citizens of Ireland who deserve a lot better.