*Emma and Anne Malone in Whitegate. Photograph: Ruth Griffin
A WHITEGATE mother of four is pleading with Clare’s elected TDs to fight for a respite house to be opened in East Clare.
Anne Malone has been a long-time campaigner for improved disability services and even successfully secured the first special needs assistant in Ireland, a process which took three and a half years.
She is now battling for a respite house in East Clare to help her daughter Emma and others with intellectual disabilities in the locality. A respite house had been in operation in Scariff but closed three and a half years ago, Emma had attended it for three years prior to this. Her efforts for an East Clare facility have been ongoing for two years but she feels the matter needs to be highlighted in advance of the General Election.
No politician has called to Anne’s door in twenty four years, she claimed. “Any politician that is willing to take this on is guaranteed my vote and the four votes in this house,” she told The Clare Echo. “The difference it would make to us as a family would be unimaginable,” she said of the prospect of a respite house.
Thirty four year old Emma currently attends Scariff Outrech, a support service for adults who have an intellectual disability and/or autism. Anne explained, “She has an intellectual disability, and she’s got cerebral palsy but her biggest problem is her speech. She can’t live alone, but her speech is really her biggest issue and you know intellectual, she wouldn’t understand money, if she had €50 she wouldn’t really know the price of a sandwich. Just to look at her, she looks perfect, like if she walked in now you’d say what is this woman talking about, she looks perfect but she’s not perfect, she’s good and she’s better than a lot of people would be”.
“Overall she is very good but Emma can’t live alone. She can’t go away on her own so having respite is the equivalent of her going away a night a month, it would give her the chance to be a normal person and it would give her a break from us”.
What happens in the future is a worry for Anne. “The time will come when we’re not here, it’s a burden leaving behind that nobody wants to leave behind. I find now the hardest part is thinking what happens Emma when we’re not here”.
She continued, “When we’re gone, that’s my biggest worry is for my family. We love Emma with all our heart but we haven’t been able to do a tonne of the things that we would like to have done. Her brother Derek was in the Irish Paralympic team, he has cerebral palsy, he was running in the Paralympics in Athens and two of us couldn’t go because Emma wouldn’t go so her Dad stayed at home and I went, he got his medal but his Daddy missed out on all of that because she didn’t want to come. This is the thing, I don’t want her brothers and sisters to be missing out and there’s no way they’ll abandon Emma”.
Speaking to The Clare Echo, Anne shared her frustration that the opportunity to acquire a property for this purpose adjacent to the Scariff Outreach in Market Square was passed up on after it went on the market for €400,000. “They say it has to be a bungalow and it can’t be a two-storey house but there is a property across the road from the day service, it was brand new and they couldn’t have had much to do with it, it was a two storey house, nearly all of them are capable of going up the stairs so you could put the others downstairs can’t you, they’re not all going to be there together at the same time. It didn’t make sense to me, they could have walked across the road to the respite independently provided the traffic calming measures were done, that would have made a difference to them”.
Provision of such a respite house somewhere between Killaloe and Scariff is achieveable, she maintained. “I see no reason why it shouldn’t happen because it’s a right and, I mean, you can’t expect the whole of East Clare to go into one house, to cram into one house, Shannon is an hour away from here, I mean why should you have to be an hour away from your family when you go into respite, you like to feel that your family are near you. In Scariff, Emma knows everybody, she knows more people there than me. She has to go to all the shops to chat to all the owners because she knows them all, everybody knows her, she’s already integrated into their community, so you should keep them in their community and that’s where they’re happy in their community. You can’t make sudden changes with people with intellectual disability. It throws them completely off guard. I mean, Simon Harris was on the other night, and he told us about all the money he tucked away for a rainy day, why waste money, look at the cost of petrol going to Shannon three or four times a week, I mean put it all together and you would have respite houses”.
After finishing school in Woodford aged twenty one, Emma began to avail of day care services where she is four days a week while on Fridays she is part of the staff at Mountshannon National School. “When she finished school, Jim Collins said to me, let her stay on, he said, if she wants to stay on for work experience, there isn’t a budget. The staff are all very good to come her birthday and come different times. They all give her their little bit themselves. She’s not just an ornament there. She helps them with everything around the school, she photocopies for them, she fills in if a teacher has to go answer the phone, she does everything. She is just a part of the staff and actually when she finished secondary school which I thought was a very nice thing and it shows how the little things mean so much, the principal wanted to make sure she knew she was staff so he brought a photographer in to take a staff photo and they put it on the wall just to show Emma that she was staff and it meant so much to us and to her. When Jim came in, the new principal had exactly the same policy about Emma”.
