Laois Offaly Families for Autism (LOFFA) say they are in“utter despair” over what it claims is mis-management and lack of therapy provision to children with autism in the HSE Mid-Leinster region.
Its Chairman Gerry Loughlin has written to the Leinster Express in an effort to highlight the difficulties faced by families and children with autism. He said there are 250 families in theLOFFA group, triple what it was in 2005, and 10 per cent of families have more than one child affected by autism / autism spectrum disorder (ASD).
He says the local HSE early intervention team has responsibility to look after children up to 5 years of age and the service is supposed to provide children with a disability the intervention they need.
LOFFA say parents normally become concerned about a children having autism when aged two, but when they apply to have their child assessed by the HSE early intervention team they discover that the waiting list is over a year.
“If the child does get assessed by the early intervention team and is found to need Occupational Therapy, then the fun really starts - the waiting list in Laois is over three years and 150 children long,” says Mr Louglin.
The group say that by the time the child reaches the end of the waiting list he/she is too old to be seen by the early intervention team, so rather than providing them with the therapy they need, they are referred to the end of yet another waiting list.
“It is very clear to all that many children are slipping through the net, their needs neglected, and their futures severely compromised. If you ask why the service is so bad, those charged with service provision will tell you that they do the best they can with the resources allocated, or that there is an embargo on recruitment,” says Mr Loughlin.
LOFFA say education also plays a big part in the potential development of autistic children.
“Given what is at stake for both the individual and the state, you would think that each child would be seen by an educational psychologist on a monthly basis. The reality is that most autistic children are rarely seen by an educational psychologist if at all.
“Teachers have a really big part to play also. They are well intentioned, hard working, dedicated and caring. It is a great pity that their enthusiasm isn’t matched by the provision of appropriate training in how to teach children with autism,” claims Mr Loughlin
LOFFA say the cutback in Resources hours and SNAs support to children in the mainstream schools, will prove costly in time
“The role of parents cannot be understated. We know that no child ever comes with an instruction manual; however guidance on how to raise a child with autism is nowhere to be found. Support groups like LOFFA do what we can.
“But over the last couple of years, there have been sinister developments in many government departments. Every assistance available to these families is now being denied on first application. Parents find themselves spending hours upon hours chasing and appealing these decisions.
“This time would be far better spent on their hands and knees interacting with their child, rather than on their hands and knees interacting with faceless administrator who have no clinical competence, trying to explain the many and varied complexities of autism.
“In conclusion the current status quo is one of neglect, with enormous consequences for the individual, their families, and the State,” said Mr Loughlin.