State's direct provision just warehouses the vulnerable
Maybe the families and advocates of those with intellectual disabilities should be freer to make a choice about where their loved ones are cared for, says Brendan O'Connor
Published 16/08/2015 | 02:30
There are 8,000 Irish people living in direct provision centres. It costs an average of €112,500 to keep each of these people in those centres. Some of them are run by the HSE. Some of them are run by private contractors. 1,400 people live in HSE-run direct provision centres. Recently, Hiqa has been inspecting these centres to assess standards. They have been looking at things like whether residents' rights are being respected, and whether their healthcare and general welfare needs are being met. They have also been looking at general conditions and staffing. Of the HSE centres inspected, not one of them met the required standards. Yes that's right. None of them. Indeed, one third of the HSE centres inspected failed to meet any of the standards being inspected. So out of 75 HSE places inspected, 75 of them were substandard and 25 complied with no standard in any category whatsoever. They were literally doing nothing right according to Hiqa.
The picture isn't much better in general. When you include privately-run direct provision centres, which are all, remember, ultimately paid for by the HSE, by us, to the tune of nearly a billion a year, 93pc of the total are not up to standard. It's a fairly grim situation.
I should explain. Maybe you are wondering why Irish people are living in direct provision centres. The truth is, I don't know either. But effectively that is what many of the "homes" to which we consign adults with intellectual disabilities are. It basically amounts to direct provision, where human beings have no real autonomy over their fate, their care, their day. They are at the mercy of the state, or of wherever they end up. Many of them, of course, need to have all their decisions made for them and all their needs met by direct provision, but for others, more choice would probably make for more fulfilling lives, more humanity. But it is not generally possible in an institution where the needs of the staff, the routine and the collective prevail.
There are of course some wonderful homes there and some wonderful people working there, but essentially they amount to warehousing for human beings, a way of putting a problem out of sight and out of mind. Indeed, so keen are we to put this "problem" out of sight and out of mind, that we pay €900m to do so, for just 8,000 adults. These are people who have no one to look after them or who cannot be looked after at home. Many of them are people who fell between the cracks in less enlightened times. Many of them are people who wouldn't necessarily need to be in these places if they were born now. Some of them are there because there is nowhere else for them. And many of them are there, it has to be said, because it is the best place for them to be to get the most out of life.
It is easy to see how these human beings can come to be seen as a problem. Sadly, even parents of children with intellectual disabilities can start to see their child through this prism. The problem of what happens to them after their parents die. The problem of what happens to them after they finish school and the "normal" routes into adult life and further education and employment are not open to them. Parents fret about whether they will get a place somewhere, in a day centre or whatever, and often they hear nothing until that last minute. So that notion of the young person being a problem is exacerbated.
Equally, no one wants to see their child go into an institution. No matter how profound their needs, no one wants to see their child become a mere "client", a so-called "service user". Presumably these terms were meant to usher in a new customer-centred approach in care, an approach that puts the "client" at the centre, but they have, in a sense, become dehumanising words in their own way. And somehow too they have put the so-called service providers at the centre of the equation, which is how it always has been.
Equally too we should try and remember that there is nuance in everything. Some of the things that these homes fail inspections on can be things as innocuous as cobwebs in corners and wear and tear on fixtures and fittings. While you can see how these things might be seen as symptomatic of a broader malaise, there are probably many happy family homes in Ireland that would fail a Hiqa test.
There are also many very good people working in service provision out there who would argue that the Hiqa inspections of the homes they try to create for the adults in their care have become more of a hindrance than a help. They would argue that Hiqa's checklists do not assess effectively how happy a home is. They would argue too that they could run even happier homes if they didn't have to spend so much time filling out paperwork to meet Hiqa standards. They would argue too that if the money that went into these inspections went into fixing some of the problems Hiqa finds, there would be a lot less problems.
You have to wonder if we have the model all wrong here. Can you assess the happiness of a home and the well-being of human beings with a checklist? Cases where certain homes have passed Hiqa tests, only to be found afterwards to treat "service users" appallingly, would make you wonder how effective these inspections are. And again, you have to remember that a happy home can have a few cobwebs.
The measure of the effectiveness of a system that deals with the lives of human beings should presumably be levels of health, comfort, happiness and fulfilment. In a way, it is difficult for a state agency to measure these things for 8,000 very different people in very different homes.
Maybe this is a daft idea but it would strike you that the best people to assess a person's general physical and emotional well-being is that person's family. And while many of the 8,000 in these direct provision centres don't have family to advocate for them, all of them should have an advocate to fight their corner against the system.
And maybe this is an unfashionable idea too but sometimes a marketplace that offers choice can be a better regulator than a state bureaucracy. Sometimes the very act of competing service providers fighting for business, can mean that the best survive and that ones that are not up to scratch don't survive. Clearly too the private sector is very hot on the whole care industry. It is seen as a big growth sector.
So put the two of those ideas together and you have to think that maybe we should entertain the notion of stopping direct provision. Is there something to be said for giving each of these human beings access to an average of €112,500 and let them, with the assistance of their family members or a designated trusted advocate choose between a variety of privately-run facilities that are then effectively monitored by said advocates and loved ones. You could argue that the private sector isn't doing a great job with some of these homes as it is, but the HSE are clearly doing a much worse job. Maybe we should consider trying the free-market solution, with obviously, a level of oversight by the state. Who knows? It might even save some money.
And it might allow some people to live happier, fuller lives, rather than being seen as a problem to be warehoused by the state.