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At the end of last month, Fergus Finlay had an article published that brought over simplification and condescension to a new level.
In his article (Irish Examiner, August 25) Fergus rightly calls for greater respect for people with disabilities, greater transparency, better conditions and control over how the money the State pays to service providers is spent for the individual.
As someone who runs a service provider, I could not agree more with Fergus. However, it is too simplistic to hide behind an average figure, as Fergus does. He quotes the average cost of €112,500 to support someone with an intellectual disability. The point he misses is that for some people, the cost of living an ordinary life is well in excess of this, as they need significant support. What hotel will provide personal care on a 24-hour, 7-day-a-week requirement? What hotel will provide support to individuals who, due to their disability will from time to time, or in some cases, most of the time, demonstrate behaviours which may be challenging in both a physical and psychological way.
What hotel is adapted for the support of that individual with hoists, special baths, two people on hand to ensure that the safety of that person is maintained?
What privacy does a hotel offer? Most hotels I visit have very thin walls, require you to eat breakfast with hundreds of others, have no private social area for you to enjoy and little or no support to do the things you want to do, either in the hotel or outside the hotel. Perhaps Fergus is staying in a 5 star hotel somewhere where this is available, personally I, nor most of the people we support, can afford to stay in such places.
I agree with Fergus that standards have to improve, that rights have to be protected and that there needs to be equity in society for all, including those with intellectual disabilities. This also has to come in the form of the commentary that others in responsible, high profile positions, such as Fergus, make.
The condescending tone and tenor of his remarks undermines and causes offence to those who provide the 24-hour, 7-day-a-week support for people. Fergus will know better than most that much of the work done by these people is transformative in nature and they are totally committed to enabling the people who they support to have a life of their choosing.
Not just the organisations and their highly paid CEOs and management teams, but the individual care support worker who would typically earn less than the average industrial wage but who has to encounter the potential for serious physical assault as part of their daily work routine.
We will always have, unfortunately, the difficulties of Áras Attractas, and no one would ever condone behaviours such as that. But that is not the norm. Yes HIQA have found deficiencies in both statutory and voluntary service providers and yes some of these, although we are not told what percentage, are serious but many are environmental. These environmental failures tend to be due to non-compliance with institutional requirements.
I don’t know about you but in my house, I don’t want a green running man fire exit sign at the top of my stairs and over my front door. I don’t want a floor plan and emergency lighting in my three bed semi-detached house that I have lived in for the last 10 years.
Neither do most of the people that we support who live in our communities in ordinary housing, living ordinary lives.
There are institutional settings (Time to Move on from Congregated Settings — A Strategy for Community Inclusion, which we are committed to implementing in full) that need to be closed down, but to do that needs investment.
You can’t do more with less, you can’t incentivise demoralised workforce, who despite cutbacks, have continued to provide one-to-one personal care and who want nothing more than to see the person they support respected and loved.
Only substantial investment in providing the housing they need, and the supports they need, will ensure that the institutions close and the individuals get what they are entitled to.
If Fergus would like to name some of the hotels that he feels can provide the kind of support that he says he would find at better value than the service providers that are currently doing the job, let me know, I’ll happily offer the alternative to those that we support.
If they don’t exist then Fergus, please stop using analogies that do nothing other than mislead the public and, more dangerously, the people in Government who make decisions about investing in the provision of a good life for people with an intellectual disability.
Chair, National Federation of Voluntary Bodies
Sunbeam House ServicesBray
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