We have had a great deal of discussion in Ireland about long-stay residential charges for elderly people in nursing homes over the past while. Much less mention has been made of people with intellectual disabilities who are in residential care, and who are caught up in the same policy and financial- management conundrum. I offered to write about the situation for Frontline, but I continue to be totally confused by what appear to be fumbling attempts to reinstate charges fairly.
So, I have tried to put myself in the position of an individual on Disability Allowance who is resident in one of Ireland’s intellectual disability services. I have lived in this house for about five years, since my mum and dad retired. They spend more time down the country now. I’ve got five friends here — well, we usually get on pretty well, so I guess you’d call us friends. Joe and Anne come in to do most of the cooking. They take us shopping too, because we can’t drive. I have trouble walking very far, but I help around the house. We keep our own rooms clean and we take turns with chores. Mary comes to stay overnight. I think she is a nurse — she gives Luke his epilepsy medicine and talks with the doctor if we need one. (She takes turns with two other people, but I can’t remember their names — they’ve just started working here.) Everybody in Ireland seems to be talking about money these days.
I get a Disability Allowance, and our Spar shop pays me about €25 for stocking their shelves on Monday mornings. I call that my spending money, because I don’t really see my Disability Allowance book. Joe and Anne keep a notebook about it, and they tell me how much I have for clothes and holidays and that. Of course I don’t own this house, so I pay rent, I think about €50 a week. Well, I used to pay that, but a couple of years ago, somebody decided it wasn’t legal for Cáirde (who run the services I use and who hire our helpers) to take that money. So there’s quite a bit more money in my notebook now. Last spring all of us decided to have a big holiday — usually we might go to Trobalgan, but this time we went to Florida! We had enough money between us to pay for Joe and Anne too, but they said Cáirde would have to pay their fares. We didn’t think that was fair, because it wasn’t really a holiday for them. They did say they had a good time, though.
The government must have felt guilty for charging us rent, because they gave each of us €2000 — they said it was ‘ex gratia’; Joe called it ‘conscience money’. That was a lot of money for me to think about. We talked about it a lot in our house. I got a flat-screen TV for my bedroom, so I wouldn’t have to argue with Tommy when he wants to watch Big Brother! I really wanted a special relaxer chair, too. But when Mum and Dad were talking with me, they said it would be better if I spent most of the money on something we could all enjoy at the family cottage. They got us a new lawnmower. Well, I guess it will be easier for me to walk in the garden when I go down for a weekend, most months.
Now I hear we are going to have to pay rent again. (People already pay in some places, but Cáirde is waiting a bit longer, for some reason.) Like I said before, I know people pay rent when they don’t own the house they live in. But I thought the government said it was illegal to charge people in ‘residential care’ (although our house isn’t a nursing home!). Joe says there’s a new law now that says they can charge us. And the HSE says the rent will be nearly twice what it was before. (We used to have a ‘health board’. The HSE are in charge now, but I think they’re somewhere further away.)
If you’re reading this, maybe you can help me understand, because I just can’t figure it out myself—The Department of Social and Family Affairs give me the Disability Allowance, but do I have to pay part of it as rent to the Department of Health and Children?
If I pay my rent at this house, should I pay some rent to my family, when I visit them? I get the feeling they think the DA is ‘our’ money, not just mine. (I remember when I was a kid at home, my mum used to get some money for looking after me—I think it was called a DCA or some other letters like that.) Is the Disability Allowance my money?
If I start paying rent again, how can I decide how to spend the money I have left over? Some people say I can’t give ‘consent’—but I know I can decide about lots of things (Okay, that’s not what I’m talking to you about now, but maybe we need a law about ‘consent’ and decision-making too.)
Who keeps track of these things? I’ve heard about somebody in the government who wants to see accounts of how all the government money is spent. Do you think I might have to talk to a tribunal sometime? If you can’t help me yourself—do you think maybe I could talk to Eddie Hobbs?