Mothers of autistic children take welfare grievances to Dáil
Helen Fahy, Lorraine Ryan, and Aimee Doogue, all from Carlow, made a presentation to Oireachtas members.
The same three mothers are also seeking a judicial review of the decision-making process where some families had their allowances cut and others were under review.
It is understood a letter will go to the Department of Health in the next few days concerning the action. If the department does not respond in seven to 10 days and meet with the women, then it will go to court for a judicial review.
Ms Ryan said her son Maurice, 5, lost the benefit at the end of December but she was not informed until January.
“He was diagnosed with autism in May 2009 and began getting the benefit in August. I got a letter in November saying the payment was under review. I did all the paperwork and got my GP to fill in what he needed to and sent it back.”
On Jan 12, Lorraine got a letter telling her the payment had been cut since Dec 31, four days before she was due to get it.
“They said he was no longer deemed to qualify as he did not need any more care than a child the same age.”
In a double blow, people whose domiciliary allowance was cut also had their carers’ allowances automatically stopped.
“I got a letter telling me the carers allowance was stopped too and I was told I was being assessed back as far as December because they want us to pay them back.”
Ms Ryan said the system was “crazy”. Maurice was in a special needs pre-school where he had access to everything he needed, from speech and language therapy to occupational therapy, but once he left that he went on to waiting lists. “I rang for an occupational therapy appointment and was told there was an eight-month waiting list.”
Catherine Cox, a spokeswoman for the Carers’ Association, which is supporting the mothers, said it was “extremely unfair” that when parents lost the domiciliary care allowance they also lost the carers’ allowance and the respite care grant.
“They are being cut off from all their financial supports,” Ms Cox said.
“As the appeals process is taking between six to twelve months, they may be without these payments for that length of time. Parents that we have spoken to have stressed they use these payments to pay for occupational therapy, speech therapy and other supports and interventions they need to buy in, as there are waiting lists for all of these services.
“To deny these children supports at this stage of their lives could prove detrimental to their future development as early intervention is crucial for children with autism.”
Ruth Redmond challenges those of the Department of Social Protection who deal with the decision-making for the domiciliary care allowance. * For just ONE day, say what you want to say. Don’t think of the feelings of others; just say the first thing that comes into your head.
Do things just for yourself, don’t interact with those around you even if what you are doing is affecting them; who cares, if they don’t like it they will just have to adjust.
* For just ONE day, don’t reciprocate conversations, don’t make eye contact with those talking to you, stand just that little bit too close to the person talking and every now and then, when they are in mid-sentence turn and walk away, or better still, reciprocate with a totally different subject.
* For just ONE day, talk about only what interests you. When someone asks you a question, talk only of the subject you have chosen to talk about that day, even when they tell you they are not interested, talk only about that subject like they are not even in the room, just a monologue you need to get off your chest.
* For just ONE day, when you get frustrated, no matter where you are, be it in the supermarket, the bank or in the middle of the cinema watching your favourite movie, when you get frustrated just let it out, it’s good to vent.
* For just ONE day, when you are asked to complete a task in work that you are not particularly happy about, fall to the floor and scream, keep it up for at least 20 minutes and every time you think of it for the rest of the day have a little cry.
* For just ONE day turn your lights up as high as they will go, turn your radio up as high as it will go, turn the phones up as high as they will go, in fact turn every fan, fluorescent light up and open every window and let all the noise fill the office and then try and complete your daily tasks with calm serenity and high expectations.
* For just ONE day, stick tin foil on the seams of your clothes and sand paper to the inside of your shirt and put pebbles in your shoes and walk around as normal and then throughout your day, as they scratch and itch and you just can’t take any more, just take them off, things feel much better that way.
* I am asking you to do these things for just ONE day and see just how you get on with those around you, see how people see you, hear what people say to each other about you, see just how accepting people are when it comes to dealing with you and THEN and only THEN come and tell me that my child does not need any extra care or attention. When this is done then I will accept what you say.
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