May 23, 2023, Extra.ie: Tipp boy living with autism and intellectual disability 'in wrong school' due to 'inaction' from HSE https://extra.ie/2023/05/23/news/real-life/tipperary-boy-autism
A Tipperary boy living with autism has never received proper school support due to 'inaction' from the HSE when his parents called for a reassessment of the severity of his intellectual disability [ID].
Ten-year-old Neil Darmody from Ardfinnan, Co Tipperary, attends Scoil Chormaic Special School, alongside his brother John, 5.
Speaking to Extra.ie, Cara and her father Mark explained how Neil was reassessed very recently, after a private appointment was booked by Mark and his wife Noelle.
Mark said: 'The HSE paid for our private appointment.
'Neil was reassessed on March 31 of this year; we booked a private appointment and a private psychologist to deal with that due to the unbelievable pressure placed on the HSE.'
Neil was diagnosed with Autism in 2016, by the HSE. At the time, he was deemed too young for a proper assessment for an intellectual disability.
In 2018, Neil was given a mild to moderate ID diagnosis, and placed in Scoil Chormaic special school -- which deals with children with mild cases of intellectual disability.
Mark told Extra.ie: 'He was found to be mild to moderate. We disagreed with that because he didn't have a single word in his head -- he still doesn't today; has not made any advance.'
'He was seen by the HSE expert in this field in 2020, three years ago, who recommended that he be assessed as a priority immediately,' Mark shared.
'They failed to action their own expert's letter -- there was back and forth going on for three years, and that led to the enormous pressure that led to the reassessment.'
In a timeline put together by Mark for the purpose of review by the Taoiseach, the parents detail how they pushed for action regarding Neil's assessment for the bones of three years.
Following a meeting with An Taoiseach and Minister for Special Education Josepha Madigan, the case is on the HSE's agenda, and a letter of apology was issued to the Darmodys.
Neil and his younger brother John, 6, who also has autism.
The letter of apology, issued two years and four months after the expert's advice, from the HSE read: 'I am sorry to inform you that the referral letter (of Dr O'Loughlin) was not actioned and hence was not reviewed or responded to.'
The family were first told that Neil would be prioritised, and then informed the young boy is number 81 on the list. They were then told he would not be reassessed 'indefinitely.'
A formal complaint was made regarding the inactivity surrounding the expert's letter.
Over a month after the complaint was made, the HSE acknowledged the correspondence and said that, due to an administrative error, they only received the complaint the day previous….
'This is the second time that the HSE did not action something in relation to Neil,' Mark notes in the timeline of events.
Finally, in November 2022, the family were told that the HSE were attempting to find someone in the area that could fulfill Neil's assessment.
The Darmodys were promised that Neil's case was being prioritised….
In December, the Darmodys were offered the chance for Neil to be assessed through the National Treatment Purchase Fund, which would require a round trip to Belfast….
Two days before Neil's assessment, confirmation comes in that the HSE will formally sanction the assessment, and would pay the bill.
Following Neil's assessment, his parents receive a report to confirm that he has been formally diagnosed with an ID of Severe to Profound.
Detailing the pain caused, Mark told Extra.ie: 'Neil is now classified as profound. It was never a close call. It's a disgrace.
'He needs to be in a particular type of special school, so they basically put him into the wrong school.'
Mark added: 'We don't want any other family to have to go through what we've had to go through.'… Immediate family relief to families paying for assessments and services.
Speaking at the AsIAm National Conference in February, Cara called on additional funding to be put into the National Treatment Purchase Fund to pay for privately sourced assessments and services.
This will 'eliminate waiting lists to get to the point where new applications can be dealt with within a reasonable time period,' she stated….