Mr. Mark Darmody:

It is the greatest honour of our life to be here today. My name is Mark Darmody. I am married to Noelle and we live in Ardfinnan in County Tipperary. We have three children, two boys and this beautiful girl sitting next to me. Both boys are severely autistic and non-verbal. They need 24-7 care. I am here today to tell the committee the devastating effect having severely autistic children has on a family and on us as individuals. I will cut to the chase here. Our lives have been destroyed by this. Everything achieved, personal interests, work, friends and charity work all yield to giving care full time to the boys. Both boys receive totally different services in the public and private worlds. The outcome for one, Neil the older boy, is devastating and goes on even as I sit here today. We will obviously get to that.

Neil is ten years old and John is 5. Neil was diagnosed by the HSE when he was aged approximately three and three quarters and John was diagnosed privately at one and three quarters. Neil never received proper services at the right time; John did, albeit mostly privately. Neil does not really make progress; John does.

I would describe our attempts to get services as horrific, humiliating and inhumane. I will very briefly tell the committee about Neil. He was diagnosed with autism in 2016 by the HSE. He is also diagnosed with a mild to moderate intellectual disability. By 2020, as it was clear that he was not developing or progressing, he was seen by the HSE’s child psychiatrist who stated emphatically that Neil’s intellectual disability was severe and that he should be reassessed as a priority to ascertain his present intellectual disability before psychiatry could be considered. That recommendation, which went to three HSE managers, was never actioned. In June 2022, we received a letter from the HSE apologising, but with no definite reason for not actioning the referral. We entered negotiations with the local disability services manager, who stated she would attempt to outsource an assessment. I subsequently made various media appearances and was highly critical of the HSE and what happened to our son.

We were then told that Neil would not be reassessed indefinitely. I sent four emails asking for this to be put in writing. All have been ignored. As I sit here today, our family is, effectively, being ignored by the health system as if we do not exist.

How is Neil now? He hits his head and bites his hands every day. Due to total incompetence, we have lost almost three years. The lack of intervention has now done irreparable damage to his development. The scandal is that the failure to intervene with Neil continues to this day. He may also be in the wrong special school, which would be another scandal. I made a formal complaint to the HSE director general on 29 August 2022, which was acknowledged. It was sent on to our local area for investigation. The "Your Service, Your Say" policy states this complaint should be investigated within 30 working days. It clearly has not been. I received a letter of apology on 4 November 2022, which stated that my complaint was only received locally on 2 November 2022, due to an administrative error. Our family has now been the victim of several administrative errors. Our son continues to suffer while these errors take place.

Some of the things I am calling for today include immediate financial relief for parents paying privately for assessments and services; the introduction of a health oversight authority, similar to the Policing Authority, and a proper external complaints mechanism; the expansion of the summer provision programme, and I will be calling for it to be made mandatory within special schools; and the enactment of new legislation specifically for inclusion. I will expand on this point later.

I will also be providing a unique insight into schools. For five years, I owned a consultancy that provided a legal training course entitled "Managing Aggression and Violence within Schools". This was delivered for boards of management and staff. I presented this course to more than 400 schools. This point will come up later in respect of what I see happening within schools. Today, I will attempt to plead for help, not just for our family but also for the thousands of families who simply do not have a voice. I now yield to this incredible lady who will tell the committee about her life and her journey.