Teenager to stage protest as needs-assessment waiting lists projected to soar

By Cillian Sherlock, PA

A teenage campaigner has urged the Government to “stop breaking the law”, as the waiting list for assessments of need is projected to soar to almost 25,000 by the end of the year.

An assessment of need (AON) is carried out to identify if a child, children or young person has a disability, and is designed to identify their health needs as well as service requirements.

Once the HSE receives an application, there is a legal requirement for the AON to be completed within six months.

The total number of applications overdue for completion at the end of March 2025 stood at 15,296 – an 8 per cent rise on the end of 2024.

Throughout the first quarter of this year, just 7 per cent of assessments were completed within the timeframes set out in the Disability Act 2005 and accompanying regulations.

In response to a parliamentary question from Labour TD Alan Kelly, the HSE said that demand for AONs continues to outstrip system capacity, despite increases in activity and commissions from private assessors.

The HSE anticipates that by the end of the year there could be as many as 24,796 AONs due for completion.

Cara Darmody, 14, is staging a 50-hour protest outside Leinster House from 10am on Tuesday, against the back the system.

The disability rights campaigner will be ed by what she calls her “coalition of the willing”, made up of a combined opposition of Sinn Féin, Labour, Social Democrats, People Before Profit-Solidarity, Independent Ireland, Aontú and others.

Cara, from Ardfinnan in Co Tipperary, said the Disability Act has been “systemically broken” for almost a decade.

“It is a national disgrace and an international embarrassment in how we treat children in Ireland with autism or intellectual disabilities. It must end – right here, right now.”

Cara was initially motivated to pursue her advocacy because her two brothers, Neil, 12, and John, eight, have autism and severe/profound intellectual disabilities.

She said they were “both failed dramatically by the state” in relation to the assessments and services that they received.

“Every single day in our house is a struggle, and my mam and dad often go days without getting any sleep whatsoever.”

However, she stressed that her advocacy is focused on the the national picture rather than solely on the experiences of her brothers.

“There are thousands of children rotting on waiting lists and thousands of families who are struggling and too scared to stand up to the Government.”

Speaking to the PA news agency, Cara said: “The Government is breaking the law on the assessments-of-need issue by not assessing 93 per cent of children within the six months of their application.

“It is disgraceful and they are smashing the law.”

Cara has met three Taoisigh, Micheál Martin, Leo Varadkar and Simon Harris, about her campaign.

Despite calling for “dramatic and drastic emergency action” for two years, she said her request to ultimately fix the issue has gone unheard.

Cara added: “I’ve requested so many meetings with politicians and all that, and they all tell me the same thing – it is all talk and no action.

“While it’s not my responsibility, I’m going to do everything I can to try and solve this issue.”

She said she was credited by Mr Harris who, while Taoiseach, announced millions of euro in Government funding towards “Cara’s Fund” to deal with AON backlogs.

She said: “I hope to achieve more funding through this protest to help thousands and thousands more children to get an assessment of need.”

She added: “If the Government think I’m going away any time soon, they are 100 per cent wrong, because I am going to keep fighting for those who can’t fight for themselves.”

The second-year student will also be spending some of her time studying for her summer exams next week.

Also speaking to PA, Cara’s father, Mark Darmody, said he was “extremely proud” of his daughter’s work for affected families across the country.

“We just her as best as we can, and we’ve put in a huge plan to make sure she’s protected.

“But her story is going to resonate in a really big way.”

He said the projections for AONs to the end of the year should be a “cry for help”, and indicate that the Government has “lost control” of the matter.

“The Titanic is going down, there’s no other way you can read that.

“How many children before the Government says this is an emergency, a national crisis?”

Cara met Minister for Children and Disability Norma Foley on Friday, and has recently asked a number of questions in letters to the Taoiseach and Tanaiste.

She wants the Cabinet to declare the matter a “national emergency for children”, activating an emergency mindset to implement a timeline for when AONs will be completed within the appropriate period.

She believes a taskforce should be established to identify and remove possible obstacles for recruitment, as well as any barriers to required law changes.

She also wants Cara’s Fund to be given additional funding and for the National Treatment Purchase Fund to be used for waiting lists.

Cara has also asked to address the Cabinet subcommittee on disability directly.