In the second of a four-part series - Susan Dennehy looks at families living with ASD
There is no question that having your child diagnosed with Autism can be a shock, but many parents report experiencing an even bigger shock when they go to seek the therapy their child needs.
As they face the prospect of a long time on a waiting list, many parents feel they have no choice but to complain or to pay for services privately - either way the costs are high.
In Part Two of 'Voices From The Spectrum', a series of four reports about autism airing on The Pat Kenny Show this month, parents say lack of appropriate public therapy is robbing their children of a future and robbing them of a decent family life.
Edel is an ex-nurse living in Galway, her son John is 8 years old. According to Edel, John has been waiting for one-to-one speech therapy from the local HSE provider for five years, and without it he is being held back:
"At the moment, John attends a special class in a mainstream school. He’s in an Autism Unit. He is quite a bright little boy but his ability to progress in the education system without these services is stagnated. His teacher strongly feels that at this stage John should be spending at least half his day down in the mainstream class and it’s just not possible".
Dismayed at the lack of therapies being provided, Edel complained locally to her son’s HSE provider, she contacted the Ombudsman for Children’s Office to seek their assistance, and she wrote to The Minister For Health at the time, Leo Varadkar.
She would say that the process of complaining was not easy and took a great toll on both herself and her family and was very disappointed by the response she received to her letter to the Minister:
"We were told that the Minister for Health is precluded from interfering in the day-to-day business of the HSE!’ Edel still wonders about the implications of this response because, "if the HSE are not answerable to the Minister for health, who are they answerable to?"
"The complaints we hear are really the tip of the iceberg"
One route open to parents who have a complaint about a public body is to contact the Ombudsman for Children’s Office. On the subject of parent’s complaints to his office, Dr. Niall Muldoon, the current Ombudsman for Chlldren, explained that "The complaints we hear are really the tip of the iceberg", although he says they do reflect the kinds of problems parents encounter: "there are often long waiting lists and the management of those waiting lists in each part of the country is different…that inequality across the country is not appropriate. We need to know that every child, no matter where they are is not in a lottery for the services.”
While some complain, in a bid to get their child the therapies they need, increasingly parents go down the private route. According to Mark O'Connor of Inclusion Ireland:
"People are making the decision between putting oil in the heating tank or taking their child to (private speech therapy)…they are doing charitable fundraisers…and it’s not appropriate these are services that should be available to all children who require them’’.
The costs of private therapy are huge, with a single session of OT costing up to €120, and many families are getting into debt and coming under additional stress to meet these costs.
Galway couple, Sinead and David, whose daughter Grace is 8 and has a primary diagnosis of autism say that they have had to change their lifestyle completely in order to fund Grace’s therapies. David has now switched to a night shift and takes on as much overtime as possible in order to earn enough to cover the costs. According to David:
"The State has left Grace down. We have had to fill the gap, we couldn’t wait for the HSE to provide any services, we had to do it ourselves so that Grace can go into life with the best chances behind her. We just hope that our efforts are enough".
Listen to Part Two of 'Voices From The Spectrum' here: