“There was an awful lot of pain in that room,” one Cork parent of a child who has disabilities told The Echo, after an emotional and often angry public meeting which lasted four hours in the Vienna Woods Hotel on Tuesday night.
About 150 people attended the meeting, which was the first of a planned 39 public forums organised by Minister of State for Disabilities Minister Anne Rabbitte – one in each constituency – and it ran until midnight.
The minister heard a series of distressing personal testimonies from families coping with disability, and while some contributors accused her of being out of her depth, others commended her on having the courtesy to attend the meeting, with many noting the lack of any representation from the Health Service Executive.
Minister Rabbitte told the meeting several times that she had invited the HSE to attend. A spokesperson for the HSE told The Echo: “Due to short notice a representative from the HSE was unavailable to attend this forum and the Minister’s office was advised.”
As the meeting progressed, speaker after speaker described a health system in which children with disabilities are being failed, and how early intervention is made an impossibility by endless waiting lists for essential therapies like speech and language therapy and physiotherapy.
Several parents told the minister they were exhausted from having to constantly fight for their children’s most basic rights, and many spoke of their children being forced for years on end to use wheelchairs they had long outgrown.
The HSE came in for sustained criticism, with many speakers claiming its Progressing Disabilities Services (PDS) programme had significantly hampered the provision of disability services.
One primary school principal claimed that since PDS had come in, up to 60 therapists had been cut from Cork schools. The minister said she had been told by the HSE that 14.5 therapists had been removed from Cork schools, but she said she accepted this may not be the case. She added that she intended to “make an informed decision on PDS”.
A recurring theme was the suggestion that wealthier families can access services privately, but children from poorer backgrounds are left behind.
Minister Rabbitte was blunt in her own assessment of the health service. “What we have at the moment is a system that is not working,” she said.
Rejecting accusations that she was out of touch, the minister said the purpose of the meeting was to “get face-time with ye, as opposed to being fed what I’m being fed.
One speaker told the minister, “Whoever is feeding you your information is sending you up here like a lamb to the slaughter”.
Two parents, separately, called on the minister to resign, and there were angry scenes when the mother of a terminally ill child accused the minister of lacking empathy.
A number of speakers said Taoiseach Micheál Martin should have attended the meeting, as a local TD and as the country’s leader, and one man said “He should be here, because he created the HSE."
Ruairi McGrath, from Gurranabraher, said his daughter Olivia will be six next month and she has profound physical and intellectual disabilities.
“Our children are the forgotten children, they’re only seen as a burden on society,” he said.
He highlighted what he called the bureaucratic hoops parents have to jump through to access primary medical certificates to claim back Vehicle Registration Tax on cars modified to help transport disabled children.
Aisling Hennebry said she was at the meeting on behalf of Carrigaline Special Needs Community School.
“We had a fight to get the placement first of all, and now there’s no multi-disciplinary team, [providing therapies], at the school.
“It’s a brand new special needs school, just set up last year, yet they have no services in the school.”
Julie Cunneen, who is deaf, was at the meeting with her 14-year-old son Liam.
“We’re both deaf and we both have arthritis, and Liam has autism, and ADHD, dyspraxia and dyslexia,” Ms Cunneen said.
Liam received cochlear implants ten years ago, which he described as “brilliant”, but she said the family had received little other help since. Ms Cunneen said she was exhausted and she feared she hadn’t much more to give.
“I want Minister Rabbitte to do something practical for people like us,” she said.