‘If anybody thinks I’m tired, they are very wrong’: Cara Darmody to continue protest

Last Tuesday saw another of her many returns since then to the seat of government.

Those returns have included addressing the Joint Committee on Autism, in November 2022, telling members she was sick and tired “of adults who just talk”.

Cara, who got 97% in her Junior Cert maths in 2022 to help raise awareness and €82,000 in funding for better services for autism locally and nationally, implored them to “just do your job”.

Her appearance before the committee also saw her enter the history books by becoming the youngest person ever to address a Dáil committee.

The following year, she sat the Leaving Cert maths paper — which she would later pass with another 97%, making her the youngest child to ever sit both Junior and Leaving Cert maths papers.

Last year also saw her, yet again, beating a path to the Taoiseach’s Office, to see the then incumbent Leo Varadkar.

Cara, from Ardfinnan, Tipperary, also met the HSE’s chioef executive officer Bernard Gloster. She told him the HSE was “a national disgrace”.

Motivating her is a deeply held conviction inspired by how her 12-year-old brother Neil was failed by the HSE, which took until December 2016 to diagnose him as autistic.

This was despite him being referred by a public health nurse when he was aged around 16 months to local HSE child services as a child of concern.

As a result of a lack of help from the HSE, Neil’s autism got steadily worse.

His self-harming, for example, started six years ago with intense arm scratching but progressed to very aggressively scratching his elbows — which led to deep cuts in his elbows — then to smearing.

By “smearing”, this means Neil — who cannot be toilet-trained — takes off his nappy, dips his hands into it and smears his own faeces over surfaces around him.

Considered a flight risk, he has to be watched constantly, which is one of the reasons Cara’s mother Noelle has to stay at home rather than accompany her on her engagements in her campaign.

John, Cara’s other brother, who was born in February 2017, was diagnosed privately in November 2018.

Because of the way Neil was handled by the HSE, Noelle and Mark have since paid for more services for him privately.

He has benefitted from early intervention but the family believe the window of opportunity to tackle Neil’s issues has already passed.

While Neil and John inspired her to start campaigning, Cara is also fighting for other families like her own.

She says that because so little has changed for them since she started, this was why she was standing outside the Taoiseach’s office from just before 8am on a balmy sunny Tuesday morning this week for the start of two protests a week until the summer recess.

She has decided one day will be outside the entrance to government buildings on Merrion Street and the other will be outside the entrance to Leinster House, about eight minutes walk away on Kildare Street.

Either way, the unedifying sight of a schoolgirl protesting at the heart of government for the next three weeks does not reflect well on the government or the health service.

Her protest started very well, with Mr Harris’ staff inviting her in to meet him shortly before he arrived for work from Brussels on Tuesday.

That meeting led him to agreeing to another meeting — which a spokesperson later told the Irish Examiner was “really good” — with her and her father Mark on Thursday, at which he agreed he would meet her again in three weeks.

The purpose of that meeting will be to see when a date can be set by which time the HSE will be forced to stop breaking its legal commitments to disabled children.

Waiting lists

Although — under the Disability Act 2005 — it is legally obliged to have a child’s needs assessed within six months, the agency consistently fails to do this.

Indeed, figures released to the Irish Examiner this week provide a snapshot of what one set of waiting lists were like in March last year, and what they were like in March this year.

They show that compared to March last year, there has been a reduction from 17,157 of just 878 to 16,275 in the number of children waiting for an initial contact with the HSE.

That’s before they then join another waiting list to be assessed, and before they join another waiting list to access services.

The figures also reveal that in at least five of the HSE’s nine Community Health Organisations, the number of those waiting more than a year have either increased or only reduced by a very small fraction.

On Wednesday, Cara also did very well with the Oireachtas, and at the gates of Leinster House round the corner from the Taoisach’s office.

It started in the morning with her addressing an anniversary meeting for politicians involved in a recent all-party autism report in the Dáil’s Audio Visual Room.

Then, she walked from the AV room, across The Plinth with her father, went back out through the security exit and — after quickly heading back to the car to get her placards — she began her protest at the front gates of Leinster House.

Public and political support

She was greeted in turn by Labour Party leader Ivana Bacik, and former leader Alan Kelly, various Sinn Féin politicians, including health spokesperson David Cullinane, Independent Ireland leader Michael Collins, and Social Democrats leader Holly Cairns.

They all vowed to support her campaign, and committed to changing the system if they ever got into power.

Random members of the public repeatedly came up to her and congratulated her for what she was doing and she took it all in her stride, as a number of motorists driving past hooted their horns in support.

There were times when she just sank back into her deck chair and played with her mobile phone or watched what was going on around her as her father explained the context behind his daughter’s campaign.

Cara later told the Irish Examiner: “I found it all very interesting but what absolutely motivates me is wanting a commitment from the government that they will force the HSE to stick to the law and honour its obligations once and for all.

“The damage that delays in assessments and access to services cause is, in many cases, irreparable.

“I know this because my oldest brother Neil was failed by the health service.

“It is for him and my other brother John, and all those other thousands of children who are being failed that I am doing this, and for whom I will continue to do this.”

HSE response

The HSE said: “We are sorry some families are having to wait to access an Assessment of Need (AON).

“Waiting lists are growing as demand outstrips system capacity.

“The demand for AONs has increased significantly in recent years, with a 25% increase in the number of applications for AONs received in 2023 compared to the year before.”

It also says that a new “waiting list initiative” will target families waiting longest for AONs.

Cara, however, is unimpressed, and has dubbed the assurance as little more than just “a newer version of what has been said before” – it is not hard to see why.

Back in August 2020, for example, the HSE secured €7.8m to address overdue AONs — when there were (at the time) 5,078 children waiting to get them assessed or for the assessment process to have been carried out.

When the money was allocated, the HSE promised it would address overdue AONs and help “ensure further backlogs do not occur”.

Less than two years later, it emerged there were 11,582 children waiting for an initial assessment, around 1,300 of which had been waiting over a year.

In May this year, the Government announced funding to try again to sort the waiting lists problem out.

This time, the funding — €6.89m — mis to “accelerate an AON waiting list initiative, through the procurement of private assessments for long waiting families”.

The money will, the Government says, allow the HSE procure up to 2,500 additional AONs, “with delivery targeted over the next six months”.

The funding, the Government also pointed out, is in addition to existing HSE core funding of €5m, which was allocated to pay for private assessments, also targeting 1,800 AONs for completion.

Cara says she has heard it all before.

“I’ll be impressed when the day finally arrives when nobody has to wait more than six months to be assessed or to access the services they desperately need,” she said.

“I didn’t think my campaign would be a short one, but I am now two years in and — if I am honest — I didn’t think I would be still doing this.

“But if anybody thinks I’m growing tired, they are very wrong.

“If I have to be here for another two years, I will be.”