Cara Darmody: I won’t be going away and will continue to call out disability discrimination

Cara Darmody from Ardfinnan, Co Tipperary, with her father, Mark, leaving Leinster House after they addressed the Oireachtas Committee Committee on Autism. Picture: Gareth Chaney/Collins Photos

Hi everyone! It's Cara Darmody here, the 12-year-old autism advocate that has gone to Leinster House once a week since last January to try and get the Government to make changes in the autism and disability worlds. 

I have two severely autistic brothers, Neil, aged 10, and John, 6, who cannot talk to me so life is really hard in our family. That motivates me to help the thousands of other families who are in the same boat.

You might remember me as the child that sat the Junior Cycle maths exam last year, getting my result of 97% on The Late Late Show.

But because the Government was all talk and no action, I came back again this year and sat the Leaving Certificate maths exam while still in national school. There was no way I was letting them off the hook that easy!

The waiting lists for children who present with autism are a total disgrace in this country. There are over 17,000 children who are waiting for first-contact from their local HSE office — that’s waiting for just the first introductory phone call from them, never mind an assessment or therapy. It is a national crisis and an absolute disgrace.

And then parents like mine end up paying for the assessments and services that the State cannot provide in a timely manner. It is just so wrong.

So, our family set a precedent. My dad booked a private psychologist, got the HSE to ‘take’ that appointment as theirs by placing massive pressure on them, and then got them to pay the bill of €1,700. It really was as simple as that. But why shouldn’t that be the same for everyone else? That’s one of the reasons why we’ve campaigned so hard.

I’ve just had the most amazing ten days of advocacy and I’m bursting to tell you all about it. I was thrilled to get an invitation to Áras An Uachtaráin to meet President Higgins and to briefly tell him about my advocacy. 

Hearing the passion in his voice as he spoke about the various wrongs in the world will be something I will never forget and will inspire me for years to come.

Our local TD Alan Kelly was able to set up a meeting with HSE chief executive officer Bernard Gloster last Tuesday. I decided to be very brave and I told him straight out that “The HSE is a big bad ugly monster.” 

I said I wasn’t insulting him personally, but that the HSE as an organisation was causing massive damage to children by not assessing them in a timely manner. He took it on the chin and was actually a very approachable man.

I was so happy that Mr Gloster agreed that our family has now set a precedent and that he has instructed his managers to source private providers around the country to pay for assessments. 

He also accepted that the HSE couldn’t say no to paying for autism private assessments where a family had it performed by a psychologist properly validated by the HSE. There is now hope in the air for families.

Cara Darmody with Taoiseach Leo Varadkar. Picture: Mark Darmody

And then last Wednesday, I got the biggest meeting possible — a faceoff with the Taoiseach himself. I decided to call it ‘The Rumble in The Concrete Jungle — Leo The Lion versus The Little Squirt!' 

I said in the media, without exaggerating, that it was the greatest showdown since Muhammad Ali fought George Foreman in 1974!

I told Leo The Lion that there was terrible disability discrimination going on in Ireland and that he must do something about it. I also brought up the 17,000 children that are left to rot on HSE waiting lists.

There were three specific issues discussed with him:

• (1) Immediate financial relief should be granted to parents paying for private assessments, that the State accepts that it should be paying for those, so something needed to be done about that immediately.
• (2) Enhanced accountability in the HSE. I told him that the HSE investigates themselves and that it is wrong that there is no external complaints mechanism to hold staff to account. My dad explained that HSE managers are not properly regulated and are basically exempt from discipline of any type. That must change.
• (3) And finally, I brought up that Carer’s Allowance should be fully reviewed. My dad explained how a family’s lifestyle is totally destroyed if they are caring for a child with a serious disability. There is no other way to say it. The costs are really high and the supports for the Government just aren’t good enough.

I was thrilled when he said that he had no objection whatsoever with the State paying for private assessments. He also accepted that our case has set a precedent, which I was so happy about as I have been making that argument to politicians in Leinster House for over six months now.

What was also amazing about this meeting was that he seemed very interested in what my dad had to say about the State not properly supporting families that are in a terrible way due to caring for disability in the home. Various increases in DCA and the incapacitated child tax credit were discussed so let’s see what happens when he goes to the various ministers with the proposals we made.

It’s clear that my constant campaigning has started to pay off as I now have first-hand knowledge that there is an acceptance that change must happen in the autism and disability worlds. They are sick to the teeth of seeing me each week so they now need to do something concrete in order to get rid of me.

I’ve made it clear that I won’t be going away, and my big Leaving Certificate result is due out in approximately eight weeks so there had better be some movement. 

Otherwise, I’ll have to call out disability discrimination again in a big way on the national airwaves.

But I’m really hopeful that the Taoiseach is finally starting to listen. Let’s give him a chance to get this done.

See you soon!