‘This is absolutely unacceptable, children needing support are being left behind’

The huge struggle parents are facing to access occupational therapy for their children has been laid bare by several parents in the Dunshaughlin/Meath East area who spoke of their frustration at trying to access vital services.

Parents told how nobody can give them a straight answer on how long their children will be waiting for an assessment of needs with one mother being told on the one hand that early intervention is key, yet on the other hand, when pressed, that it could be three to four years before her child would be assessed.

Without an assessment and a subsequent diagnosis, parents are left in limbo and can't seek services for their children.

Desperate parents are having to pump thousands of euro into getting private assessments carried out and feel they have no choice but to somehow find the money to pay for expensive therapies like occupational therapy, speech therapy and play therapy to give their children the best chance and say they can't allow their child languish on waiting lists.

A parent who was waiting months for an OT appointment for her son and then told when she followed up that there was no occupational therapist in the area and the waiting list is years long, took to Facebook expressing her shock and frustration.

"This is absolutely unacceptable, children needing support are being left behind. I was aware there may be a waiting list but to be told the waiting list is indefinite is absolutely outrageous," Sarah Cavanagh wrote.

The post had dozens of replies from disillusioned parents who advised that the only option is to go private. Even if you have the means to pay privately, parents say getting appointments can be very difficult as many private therapists' books are full.

Speaking to the Meath Chronicle, Sarah told how her 10-year-old son is showing signs of possible dyspraxia and she was advised to get an assessment by an OT as further down the line he may need assisted technology, so she filled out the forms. After hearing nothing for months, she followed up and was told there was no OT at the moment and hadn't been for a long time.

She said her son's issues are quite mild but for children who have more severe issues, "they are going to really struggle without these services which seem to be non-existent".

"People are saying just go private but not everyone is in the position to pay that, it costs thousands. You shouldn't have to."

Sarah said even if an OT does get appointed in the area there is no hope of children, like her son being seen as there is such a backlog.

Another parent, Amy Hennessy told how she had concerns about her three-year-old son and was referred to Enable Ireland Children's Disability Network Team (CDNT) and was told they would be in touch. "I didn't hear anything for months and then had a half hour visit from a social worker to our home and that this would be sent forward to the team but there could be a bit of a wait but they wouldn't give me a time frame. I felt I kept being fobbed off and they said eventually it could be three to four years before he would get an assessment of need. You can't access any services without a report so you are stuck in limbo".

Amy went ahead and got the assessment done privately at a cost of €3,500 but even with the report which confirmed her son has level three autism and global development delay, she felt it got her nowhere. It recommended that the child needs weekly occupational therapy and regular speech therapy but there seems to be little prospect of getting these therapies for him through the public system.

She was invited to do a workshop for parents, which she did but felt it was of no real benefit to her son. Amy said the workshops which were run over several months, are not practical for working parents or those who have other children and didn't feel it brought her any closer to getting her child the therapies that he needs.

Another parent, Aisling Brophy told how she has already spent over €4,000 on having private assessments done for her four-year-old son and on top of that she is currently spending €1,200 a month on private occupational therapy and play therapy. Her son is a complex case and was diagnosed with level two autism and emotional disregulation after she paid to have the assessment of needs done privately.

"We are both on good salaries and we can maintain it for about a year but then we might have to stop paying our mortgage and go interest only just so we can get private therapy until we get on the Enable Ireland list. I can't sustain the payments. It's like another mortgage on top of our mortgage."

She feels as if she is banging her head against a brick well and has questioned if the files she submitted on her son are even being properly read. She says she can't get a straight answer on staffing number or waiting lists and says different people are being told different things.

Cllr Gillian Toole said the vacancy rate for posts in Dunshaughlin/East Meath CDNT stands at 46 per cent. She was contacted by a number of parents and said they are going to arrange a meeting for parents to come together and share information and experiences and compile a list that they will then use to try to push for improved services.

Figures obtained by FUSS (Families Unite for Service and Support) as of the end of May show that in the Dunshaughlin/East Meath Area the full allocation on the CDNT is 30.38 posts but at present just 16.97 are actually working. The team is managed by Enable Ireland and funded by the HSE.

The number of children in the open caseload in the area stood at 612. The number waiting for initial contact was 285. The situation is not unique to Dunshaughlin/East Meath with vacancies and waiting lists in the other three CDNTs in Meath also.