Children with complex needs in Laois are waiting up to four years for vital services such as occupational therapy, due to a ‘nonsensical’ HSE system says a Laois Offaly charity chairperson.
Mary Dunne is the Chairperson of the Laois Offaly Families for Autism (LOFFA) charity. She works with families who have children with Autism Spectrum Disorder (ASD).
Ms Dunne has called the HSE ‘nonsensical’ and difficult to access for families who are new to ASD.
“We are seeing waiting lists up to four years for occupational therapy. There is a peculiar policy in the HSE that every time a child is seen they are discharged regarding their conditions.
“Parents are reporting that sessions are getting shorter, a block of therapy with the HSE used to be six sessions but more often now it is four sessions and children are back on the waiting list to start all over again regardless of their condition or their needs.
“It makes no sense. It is nonsensical,” she said.
Over 400 families are registered with LOFFA. The charity works to help families in Laois and Offaly to subsidise the cost of therapies for children with complex ASD.
Ms Dunne told the Leinster Express that parents are forced to take on the role of therapists themselves and pay privately.
“Parents are doing it themselves from Occupational Therapy, Speech Therapy, Psychology, everything. They are forced to go privately and it is not good enough. Parents cannot sit around waiting five years for a service.
“These children need multidisciplinary services for complex needs.
“We haven’t had a Senior Psychologist in Laois in over a year. Children in Laois do not have a psychologist service and haven’t had it fully for years,” she explained.
Ms Dunne said it has been national policy since 2011 that a School Age Team should be accessible via the local health centre, however Laois or Offaly have never had a School Age Team according to Ms Dunne who works on the ground with families affected and has three children on the autism spectrum herself.
The School Age Team is for those aged 5-18 years and their families. The team comprises of a part time Clinical Psychologist, Occupational Therapist (OT) and Speech and Language Therapist (SLT).
The team is supposed to work with children with queried or identified developmental needs, who are experiencing difficulty in their ability to function successfully across a variety of environments.
This might include difficulties in speech and language, motor skills, making friends and managing feelings or learning new tasks.
“We protested about it three years ago and again two years ago.
“I have three children on the spectrum and my youngest has complex needs, and I had to go to the UK to even find out what his needs are. It is awful stressful on parents and worrying plus financially it is huge.
“Young families with small kids are out in the wilderness when they find out they need to access services for children on the spectrum.
“They end up having to go private because they cannot sit around and wait, they want to spend their money wisely so they ask other parents for advice but they are out in the wilderness.
“The HSE want people to go private but that is a huge financial burden, these children have complex needs and usually if there is a husband and wife, at least one of them has to give up work so they are depending on social welfare,” Ms Dunne added.
“Children with complex needs such as Autism need a multi disciplinary team but instead are being seen in isolation by individual disciplines and in the experience of LOFFA members there is very little communication and cooperation between therapists.
“I really worry about new families, they can’t even get a diagnosis. There are young families with small kids just starting out in the hugely complex HSE system that is so difficult to even access in the first place.
“Three years ago when we protested we didn’t think it could get any worse but it has,” she said.
Last week, Laois TD Brian Stanley said the number of children waiting on Occupational Therapy services have 'escalated to an all time high'.