Mary Lou McDonald (Dublin Central, Sinn Fein) | Oireachtas source

I also extend a very warm fáilte to our friends and guests. They are most welcome.

I recently met with 12-year-old Cara Darmody from Tipperary. I know the Taoiseach also met Cara in July. Cara is an amazing young person who campaigns tirelessly for better autism services for her brothers Neil and John and for so many other children failed by the system. Cara spoke to the Oireachtas committee two weeks ago. She said:

My brothers Neil and John have been treated disgracefully and I am here to stand up for them. I am also here to stand up for the almost 18,000 children who have been left to rot on waiting lists.

Cara’s family has been through a nightmare, fighting to get proper services for her brother, Neil, in particular, an experience her father, Mark, describes as “horrific, humiliating, and inhumane.” Neil is ten years old. In 2016, he was diagnosed as having a mild to moderate autism spectrum disorder. In 2020, with little progress or development, Neil was referred to a HSE child psychiatrist who was adamant that his disability was, in fact, severe. The psychiatrist’s recommendation was that Neil be re-assessed. Despite this recommendation being sent to three separate HSE managers, it was never actioned. Two years on, Neil has still not been re-assessed and has not received the services he needs.

Mark says he was told that Neil will be on a waiting list “indefinitely” but the local children’s disability team refused to put that in writing. No explanation has been given. Mark has made numerous complaints to the HSE but he has been stone-walled and the family is being ignored.

The impact on Neil’s development has been catastrophic. He bites and punches himself all day. The child is non-verbal. He needs to be brought on long drives to calm down. He has to sleep with his parents every night. Mark, his dad, says the lack of intervention has done his son irreparable damage. By contrast, his brother John has shown real progress. John received earlier intervention after the Darmodys paid for him to be assessed privately.

The pressure on this family is immense. Both children need full-time care, which has resulted in the loss of employment for both parents.

Ní hamháin go bhfuil Cara Darmody ag seasamh suas dá deartháir, Neil. Tá sí ag seasamh an fhóid do na mílte páiste atá ar liostaí feithimh míchumais.

Neil’s story is shocking but it is not unique. In fact, I spoke to families in Waterford last night who are in a very similar situations. As Cara said, there are more than 18,000 children on waiting lists just for initial contact with a children’s disability team. Thousands more are going without the services they need. There are 2,500 children whose assessments are overdue. More than a quarter of children’s disability posts are vacant, equating to over 480,000 lost therapy hours. This is a result of a failure to plan and invest in the specialised workforce and in services for children with disabilities.

Cara told the Oireachtas committee: “I am sick of adults who just talk. Why can you all not do something about this and stop the damage being done to children with disabilities?” What Neil urgently requires is a psychometric assessment, as recommended by his consultant psychiatrist. This is necessary to ensure that he is in the right school and that he gets the health and educational services he needs. When will Neil get his assessment?

See this speech in context