She brought her books to study for the second-year summer tests next week, and plenty of chocolate and buns – though 14-year-old Cara Darmody can’t have had much time for either given the interest in her very public campaign outside Dáil Éireann this week.
There was a long procession of politicians, reporters and wellwishers stopping for a word with the teenager who spent 50 hours outside Leinster House this week to protest at the delays in providing assessments of need for children with disabilities and autism, and services more generally.
By Thursday morning, after two nights on Kildare Street, she admitted to being exhausted. She got “a bit” of sleep, she said.
Darmody, who is something of a campaigning prodigy, has two younger brothers, aged 12 and eight, who have autism. They have received, says their father Mark, who accompanied his daughter all week, “almost no services from the State”.
“Neil in particular is among the most profoundly intellectually disabled children possible and was failed dramatically by the HSE,” he told The Irish Times. “He is extremely challenging and violent towards himself, but the HSE still hasn’t provided him with behavioural therapy, and he’s in an inappropriate school place.”
Similar stories were heard all week from advocates and families of children with autism and disabilities. Darmody’s protest has drawn attention to a system that is deeply and profoundly dysfunctional. The State is failing some of those most in need of help and, in doing so, is in breach of its own laws. Under the terms of the Disability Act 2005, children are entitled to an assessment of need – a formal process for assessing their disability and/or autism which outlines the services they can expect from State bodies – within six months of applying for it.
But the deadline is only met in a small percentage of cases – more than 90 per cent of applicants have their assessments completed outside the six-month legal deadline. On average, according to HSE figures, children are waiting more than 2½ years – 32 months – or five times longer than the legislation allows.
What has happened?
The waiting lists are not a recent phenomenon. They have been growing for years, though the accumulation has been accelerating of late. And it will, the HSE says, get worse.
In a response last week to a parliamentary question submitted by Labour TD Alan Kelly, the HSE said it expects the list of those who are waiting more than six months to grow from 15,000 at present to 25,000 by the end of the year. Such unusual candour from the HSE, Kelly reckons, is a “cry for help”.
Three things have combined to turbocharge the waiting lists. First, there is the difficulty in recruiting staff. The Government promises to train more therapists but that takes time; all parts of the system report shortages of staff.
Second, a High Court case in 2022 found that a system of quick assessments which had been developed by the HSE did not fulfil the statutory requirements under the Disability Act. This has resulted in many individual assessments taking much longer – and therefore fewer of them are being completed.
Minister for Children and Disabilities Norma Foley said this week that some assessments are taking as much as 90 clinical assessment hours; the HSE says the average is about 36 hours. As a result, therapists are now spending a third of their time doing assessments rather than providing the therapies needed by children after their assessments.
Third, and Ireland is no exception in this, there has been an explosion in the number of children presenting for autism diagnoses. About one in 20 schoolchildren are now being diagnosed with autism – a threefold increase in a decade. The knock-on effects on the waiting lists are obvious.
Applications increased from 8,400 in 2023 to more than 10,600 in 2024, a 26 per cent increase. HSE figures for the first quarter of this year indicate that there has been a further 20 per cent increase in the number of applications compared to the same period last year.
The delays have led to huge pressure on parents. Many TDs report it as second only to housing in the representations they receive.
“There are tens of thousands of families affected by what we are talking about, my own included,” Alan Kelly told the Dáil on Tuesday. “I deal with this issue every day. In my clinic recently, nine out of 17 appointments concerned issues experienced by people with autism.”
People Before Profit TD Paul Murphy has had the same experience.
“The issue of parents of children with additional needs is now definitely the second issue after housing that comes to me,” he said.
Some TDs spoke about their own personal experiences as parents trying to get supports for their children.
“Delaying assessment means delaying therapies, supports and a chance of a more equal and dignified life for those children,” said Sinn Féin TD Sorca Clarke, who has two children with autism.
“Parents watch as their children struggle, knowing that early intervention, proven to make a real difference, is being withheld because of inaction and indifference and because the system that is supposed to help is in fact failing them.”
Faced with the lack of supports, parents – when they are done tearing their hair out – are doing two things: they are taking legal action to compel the State to provide the services to which they are legally entitled; and they are going private, paying for the assessments that the State is failing to provide.
Paul Murphy says that 25 families every month are taking legal action.
“I now have a close relationship with solicitors whom I immediately put parents in touch with, saying: ‘You can take the State to court for that,’” he said. “People know that if you take the State to court, you will get your assessment of need eventually,” he said.
The private option is not open to everyone.
Fianna Fáil TD Catherine Ardagh, who has previously spoken publicly about her family’s challenges, said: “We were lucky to be in a position to pay; most families are not.”
[ Government to change law in bid to speed up autism and disability assessmentsOpens in new window ]
The one thing that everyone agrees on, though, is that there is no prospect of this being solved quickly. The Government says it is committed to a range of measures, including legislative change to simplify the assessments, increased funding, hiring new staff, training new staff, clarifying that assessments are not needed for other benefits, and so on. But Minister of State at the Department of Children Hildegarde Naughton told the Dáil bluntly: “There is no quick fix.”
Senior Government officials echo her comment. “The reality is capacity constraints will remain in the system,” says one.
Outside the Dáil, Cara and Mark Darmody ended the week satisfied that they had pulled the issue to the centre of the political agenda but they were left disappointed that the Taoiseach, who met them on Wednesday morning, has not promised to declare an emergency and act accordingly.
“We do accept that they are doing things – we don’t buy into the ideology that the Government is doing nothing. But they’re not treating it like it’s an emergency crisis.
“He [the Taoiseach] was talking about issues around unions – but in Covid we did not say: ‘We need to discuss this with unions.’ He has evidence from the HSE that this is out of control. How much more does he need to declare this an emergency?”
Will Cara be back?
“Yes, she has something planned already,” says her dad. “Something big.”
