Disability Act 'systemically broken' by assessment of need delays, says autism campaigner

Cara Darmody at Herbert Park in Dublin. Cara said her brothers were 'both failed dramatically by the State' in relation to the assessments and services that they received. Picture: 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 is carried out to identify if a child, children, or young person has a disability. It 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 assessment of need to be completed within six months.

The number of applications overdue for completion at the end of March 2025 stood at 15,296 — an 8% rise on the end of 2024.

Throughout the first quarter of this year, just 7% 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 demand for the assessments 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 assessments due for completion.

14-year-old Cara Darmody is staging a 50-hour protest outside Leinster House against the backlog in the system from 10am on Tuesday.

The disability rights campaigner will be supported 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.

'National disgrace'

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," she said.

Cara was initially motivated to pursue her advocacy because her two brothers —  12-year-old Neil and eight-year-old John — are autistic and have 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," Cara added.

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."