Parents in limbo as delays hamper their three sons’ development
THE ISSUE of early intervention for kids with autism is a very real one for Robert and Gillian Duggan-White family, who have three children on the spectrum.
The couple has been trying tirelessly to access services for their three kids, all of whom are at different stages of the diagnosis process, and all of whom have experienced delays in the system which their mother Gillian says is akin to ‘finding a tumour at Stage 1 but not doing anything until it gets to Stage 4’.
The couple’s youngest son, Sullivan, was referred for assessment when he was nine months old but that reference was lost.
He is now two years and nine months old and, a month ago, received a referral to an occupational therapist.
‘We were told he’d probably be seen in early 2019 but at the moment they’re working through those added to the list in the first quarter of 2016. If he turns five before getting an appointment, he’ll be put on a list for kids aged five to 18 and go back to the bottom of the queue.’
Gillian added that occupational therapy was the foundation of autism therapy but the waiting list in Wexford was ‘desperate’.
She said they had been encouraged to fill out an Assessment of Needs form which states that all applicants would receive acknowledgement within three months, assessment within six months and, after that, a relevant appointment. But Gillian said that the system is so backed up that no assessments were being done and she had been advised, by a medical professional, that you had to complain in order to make progress.
She added that Sullivan was nearly three and did not speak
at all. In the case of her fiveyear-old Logan, he had been diagnosed recently, having been referred at the age of two. However, he could not access public therapy because there were no facilities. She explained that there is an allowance for kids on the spectrum but the family could not access this because they could not get a certain part of the form filled in.
‘No one can tell us who we need to fill in the form. Our GP has no record of a diagnosis so he can’t do it. We haven’t had an appointment with anyone who can sign off this section of the form. The whole thing is so disorganised; you really are on your own.’
She said she knew everyone in Wexford was in the same boat.
‘I think maybe the loudest parent gets seen but it’s not fair to bump people up and down like that. But it happens. We were given an assessment appointment for Logan for September and a few weeks later we got a new date in October so, just like that, he was bumped down.’
The couple’s four-year-old, Flynn, was supposed to be referred for assessment when he was two but that never happened.
Gillian said: ‘We get on with life and do what we have to do. You don’t realise how tough it is until you look at other people in ‘normal’ households. It’s an emergency at this stage. Everyone knows that early intervention is key with autism - the longer you leave it, the worse it is.’
In a statement, the HSE said patients from waiting lists were seen as resources became available, noting that there had been significant year-on-year increases in demand, while there were also staffing challenges within the HSE’s Wexford Occupational Therapy Services.
Waiting times for a first time assessment in Early Intervention in Wexford is up to 26 months for non-urgent cases. Waiting times for a first time assessment with the School Aged Team is up to 32 months. The total number of children waiting in County Wexford is 1,173.
The HSE said: ‘Wexford Paediatric Occupational Therapy Services has increased to 10.4 Whole Time Equivalent (WTE) posts. It is acknowledged that further resources are required to meet increasing demands.’
One more Occupational Therapy post is in recruitment and it is hoped that the move to the Primary Care building in Grogan’s Road will further enhance the service.