FERGUS FINLAY: Dignity in disability is priceless but this waste of money is a scandal

The vast majority of the residentialservices (that cost so much) are failing to meet the most basic standards.

Last year we shelled out €900m to provide residential services for 8,000 people with an intellectual disability, writes Fergus Finlay

I’VE more or less decided what hotel I want to live in if I get a long-term disability, especially if I acquire a learning disability. In that unfortunate circumstance, when I won’t be able to find work because of my disability, the State is willing to pay me a modest weekly allowance. And on top of that, the State will take responsibility for my residential needs. So all I have to do is pick the hotel I want.

Now, mind you, under most current arrangements, the State, or a service provider working on its behalf, will want me to pay a significant proportion of my modest allowance towards the cost of that residential care. I understand that – there is no reason why I shouldn’t be able to pay whatever I can afford for a nice, safe, comfortable place to live – the sort of place that I can call home.

If I need a lot of additional care, the proportion of my allowance that I have to pay will be a lot higher. But let’s suppose I’m not sick, just living with a disability. I can be independent in most things, and need a little support with other things. I can travel independently, but I will need a bit of guidance with things like managing money, or looking after my diet.

So my main requirement is going to be to find somewhere warm and welcoming to live, with a telly in my room and a couple of square meals a day. I’ve been checking out the hotels I’d like – places I’ve visited in the past – that I’d be happy to move into.

I guess they’ll want to negotiate a rate for permanent accommodation. But still, looking at their websites, I’ve already decided that some of the package deals on offer will do me.

The Dunraven Arms Hotel, for instance. It’s a beautiful hotel in a lovely town. Right now, they’re offering a lovely mid-week break – two nights bed and breakfast and a dinner for €110 (€55 a night!). That’ll do me nicely if they’ll agree to put me up all year round at the right price.

Or there’s another lovely hotel a bit closer to where I live now, so it would be easier to keep in touch with family and friends. The Hunter’s Lodge in Ashford is a lovely old-world place, nice rooms and atmosphere, nice food, and only a stone’s throw from Dublin. And there are beautiful gardens, amenities and golf courses nearby.

At the moment they have a special offer of “3 Nights Bed & Breakfast & 2 Dinners from €240.00 per person”. That’s only €80 a night, so let’s suggest we round that up as well for single long-term occupancy to €100 a night.

If I pick either of them – and I’d be delighted with my choice – I’ll be sending an annual bill to the state for my residential accommodation of €36,500.

No problem, I reckon. The State will be thrilled to accommodate me in the surroundings of my choice, and throw in that little bit of extra support I need.

Except, sadly, I’ll be turned down. We don’t do it that way. If I have long-term residential needs as a person with a disability, I’ll never get to pick where I want to live. Instead I’ll be offered a place in one of the residential centres run by the HSE, or funded by the HSE through one of the many service providers that offer such services.

And the State will pay, on average, around three times as much as I can negotiate in a nice hotel. Mad, isn’t it? Last year we shelled out €900 million to provide residential services for 8,000 people with an intellectual disability. That is, on average, a staggering €112,500 per person per annum. And apparently the HSE needs an additional €240 million to bring these centres up to standard.

Am I the only one who finds that mind-boggling? Because the other fact that has now emerged, from dozens of HIQA inspections, is that the vast majority of the residential services (that cost so much) are failing to meet the most basic standards. These are the ones in the main that are run by the HSE itself. Almost none of them would ever fit the definition of “home” that you or I would insist on for our families.

I’m not talking about luxury – I’m talking about safe, secure, warm, hospitable. You can read any HIQA report and you won’t find those words. And yet the standards are set out in a variety of HIQA publications in simple, easy-to-read English. Here are the first four standards HIQA apply to residential settings for adults:

“Residential services respect and promote the rights and diversity of adults with disabilities. Residential services respect the privacy and dignity of each adult. Adults with disabilities make choices about how they live their daily lives. Adults with disabilities develop and maintain relationships with family and community.”

Paddy Connolly of Inclusion Ireland was quoted the other day as saying that there are certain centres that pass the HIQA inspections with flying colours – “but that,” he said, “doesn’t necessarily equate to a decent quality of life.” How hard is it to achieve a decent standard of life? How is it possible that so many places fail to reach basic standards like this? Or to put it another way, how is it possible that we can spend so much and achieve so little? How are we spending so much money so badly?

The answer, I believe, is power. It’s the one thing that people with disabilities don’t have. They have needs, and dependencies. HIQA can say until it’s blue in the face that their rights must be protected and promoted. But they don’t have any rights. None.

Because if you have rights you have recourse. If your privacy and dignity has to be respected as of right, there is then no excuse. But if you live in a culture where the tradition has been one of charity, then how can you expect to have rights? When you’re part of a system where there has never been any real tradition of accountability, how can you have recourse? When service providers are funded to the extent of hundreds of millions, but only have to publish the most cursory of accounts, how can you even ask questions about your rights?

Dignity has a price, there’s no doubt about that. But study after study in Ireland has shown that we can do it far better than we are – if we start with an approach that is centred on the person’s needs and not on the bureaucracy’s needs.

And what is the price of taking dignity away? Isn’t it true that if you have to settle for whatever we want to offer, because you have no right to more, your dignity is in my gift. As a principle, that’s not acceptable. But when we spend so much money – far more than if we put you up in a decent hotel - and still can’t guarantee dignity, that’s a scandal.


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