While HSE figures differ in various regions, it is accepted that there are over 20,000 children on HSE waiting lists for various types of assessments and services and that the waiting lists are only getting worse. 

Many children are left waiting many years to be properly assessed. I have said to many politicians, ministers, and taoisigh that this causes permanent damage to these children. Nobody has ever disagreed with me or challenged that statement. The assessment process for autistic children in Ireland is a national disgrace.

As a 13-year old disability rights campaigner, I started a weekly protest outside the Taoiseach’s department on June 18, 2024. While I’m not autistic, I have two younger brothers who are, and both have severe intellectual disabilities. 

That gives me a big insight into this issue. My campaign — which is for the larger national picture — has a clear message for the government: end disability discrimination.

People might remember that I was the 11-year old that sat the Junior Cycle maths exam to raise awareness of this issue in 2022, getting my result of 97% live on The Late Late Show. I then sat the Leaving Cert maths exam the next year while still in national school to show the Government that the impossible can be done and that they need to wake up and do something about this issue.

And that really is the problem — they are not treating this crisis like the house is on fire. In my opinion, allowing children to suffer in any manner is 100% unacceptable. 

Let me explain. In 1912, when the Titanic unfortunately sank, children were saved without question. In doctor’s waiting rooms, sick children will always be allowed in first. And parents always ensure a child’s safety in their car, etc, before their own.

So how has it become acceptable in this country to leave children rotting on waiting lists and suffering permanent damage by not getting proper interventions?

All I can do is offer an opinion on that. On the very first day of my protest, the Taoiseach kindly met me and offered a formal meeting to my Dad and I that took place two days later. At that meeting, I told him that successive governments have lacked ambition for this issue and that their ideology was wrong.

They must do what I did with the Junior Cycle/Leaving Cert maths exam — set a target that people deem is impossible, and then move heaven and earth to make that happen. Failure must not be an option and excuses must not be tolerated.

Recruitment

The HSE regularly uses recruitment as their chief excuse. There are large numbers of vacancies in child disability services. But what’s needed here is huge ambition.

If the HSE cannot properly recruit, then find someone who can. Create an agency that will search the planet if necessary to find psychologists and therapists. But it will never happen if the casual attitude, that is presently there, remains.

So I had very specific ‘asks’ of the Taoiseach at our meeting. I told him emphatically that the Government must stop the HSE breaking the assessments of needs law, which states that children must be properly assessed within six months of application. 

It’s presently taking several years in many cases, with the law being broken in the vast majority of cases. I made the point that if the Government continues to allow the HSE to break the law, then they are effectively breaking the law as well.

I then asked him to set a definite timeline to achieve that and I suggested 12 months, which he agreed was reasonable. In hindsight, I may have been overly generous as many children simply cannot wait 12 months.

Most importantly, I asked that the Taoiseach to stand beside me and give that commitment in public.

Finally, I asked him for a specific financial allocation towards dealing with the backlog of services such as speech & language. The Government recently announced almost €7m in funding towards dealing with the assessments of needs backlog, so there is a template there to do this.

The Taoiseach was incredibly kind to credit my work and advocacy as a major contributing factor to that €7m allocation, but it is only a drop in the ocean and serious investment is now needed.

My once-a-week protest has been the most positive one ever seen at Leinster House with me playing football, camogie, darts, and even building the lego Batmobile there. My next big event is a ‘Monster Meeting’ outside Leinster House on Thursday, September 26, to attract many others to this cause.

I will meet the Taoiseach again on August 26 at 12.30pm, where he will have an opportunity to show what his ambition is for children with disabilities.

I’ve never met a more energetic or driven politician, but the questions remain. Will he stop the HSE breaking the law? What timeframe will he achieve that in? Will he end the scandal of parents paying privately for therapies that are the State’s responsibility to provide? 

The nation awaits his answers.