THE MOTHER OF Ronan Woodhouse, a young boy with Down syndrome whose medical card was removed, met with Micheál Martin and Billy Kelleher yesterday.
Noreen Keane and Ronan have been campaigning for his medical card to be reinstated due to the fact he has 13 associated conditions, including a cardiac condition and acute asthma.
It costs Keane around €2,500 a month to care for her son’s various medical needs. While the medical card would not eliminate all of this, it would help to take some financial pressure off the family.
Bill
Keane welcomed the news of a bill from Independent TD Finian McGrath, which would give all children with Down syndrome an automatic entitlement to resource teaching hours.
The bill is to come before the Dáil tomorrow.
She said that McGrath’s bill, if it passes, “will have a huge impact on Ronan”.
While Ronan does receive resource hours in school, they are allocated from the general allocation model and so fall short on the recommended four hours 15 minutes.
Meanwhile, a Fianna Fáil Private Members Bill would give children with Down syndrome, multiple illnesses or chronic conditions the right to a medical card.
Keane had a private meeting with Fianna Fáil leader Martin and his colleague Kelleher on the issue. yesterday.
Education
Keane described the situation as “absolutely exhausting”. She said it:
makes me question why is it that we as parents, as advocates for our children, have to fight for everything which our children would probably have automatically if they didn’t have Down syndrome. It’s really frustrating.
She said that children with Down syndrome who have “massive potential educationally” aren’t getting the resource hours they need.
Ronan had a medical card from birth, but following the recent probity review, it was removed. Keane is in the process of appealing for the second time against this decision.
“I’ve had umpteen meetings with the top executives from the HSE, to no avail really,” she said. “They are trying to fob me off with the long-term illness book which he would be entitled to anyway.”
Right now I have nothing. I’m refusing to accept the long-term illness book in protest on some level because what he requires is his medical card and I won’t accept anything less.
She said that the coalition government “is coming across as very anti-disability and targeting the most vulnerable in our society”.
“As parents of children with disabilities we are picking up the slack in terms of paying for services which should be available to our children,” said Keane.
“I’m going to fight on – I’m certainly not giving up.”
According to Keane, who is chair of Down Syndrome Limerick, 80 per cent of the children connected to the group who were due to have their medical cards reviewed subsequently lost their cards.
“I feel the complexity of their medical conditions, their associated medical conditions along with Down syndrome, is not being recognised,” she said.
Ronan is due to get orthotics soon, at a cost of €300 a pair. On top of this, he has been diagnosed with bilateral hearing loss.
“If he requires hearing aids, who is going to pay for that?” asked his mother. “I’m at the moment paying for weekly speech and language therapy and occupational therapy. Without that, my child would not be where he is right now.”
Keane is still waiting for a meeting with Taoiseach Enda Kenny. Back in November of last year, Kenny claimed that nobody had told him about Ronan Woodhouse’s case – despite being told about it at the Fine Gael national conference a month before.
“I really don’t believe that the government are taking into account just how difficult it is to have a child with a disability and the one thing that we did have was a medical card,” said Keane.
“I really think this cost-cutting is going to cost a lot more for the State in the long run.”
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