There is a total deficit of responsibility built into the State’s education system, the Oireachtas Joint Committee on Education, Further and Higher Education, Research, Innovation and Science has heard.
“From the moment you get a diagnosis, everyone tells you what they can't do for you, and why you shouldn't talk to them," the CEO of Ireland's national charity for the autism community said.
“Nobody seems to take on the role of saying who you should talk to.”
Addressing the committee today, Adam Harris, who heads up autism charity As I Am, said children often have to experience "grievous breaches" of their rights within the education system before there are any attempts to reconcile them by the Department.
“There appears to be a total deficit of responsibility in our education system. We need reform but the legislation only goes so far."
The Department of Education should be “collaborators not gatekeepers," he said.
“In recent weeks we have seen the impact a long history of government departments seeking to block the rights of autistic young people, as opposed to vindicating, has had," he said.
Too often students with disabilities are facing "an adversarial system."
Access to an appropriate school with suitably qualified staff and an accessible curriculum is something that the vast majority of children and families take for granted, Mr Harris said.
“For autistic students… simply securing a suitable school place too often requires legal action or exhaustive advocacy work,” he said, pointing to the fact some 23 children in Cork are currently without appropriate secondary school places for next September.
Securing a school place is often just the first “of many battles,” for autistic students and their families, he continued: "Securing required SNA or SET support, accessing appropriately qualified teachers and having your needs met and understood within the context of the school community are just some of the challenges which follow.”
“At the root of many of these problems is under-resourcing, a lack of rights and appeals mechanisms and insufficient training and support for schools.”
The Education for Persons with Special Education Needs (EPSEN) Act, which was the topic of the day, addressed many of these issues and concerns, Mr Harris said, but key rights legislated for through this act have still not come to fruition, despite the Act being implemented in 2004.
Speaking on behalf of Inclusion Ireland, Ms Margaret Turley said the main pieces of the Act which would benefit disabled children have yet to be implemented.
“The sections of the EPSEN Act not commenced include the parts that would give children a right to an education assessment of their needs, the development of an individual education plan (IEP) based upon this assessment, the delivery of the education supports detailed in the plan and an independent appeal process.”
Dr Niall Muldoon, the Ombudsman for Children said the fact these areas of the legislation have not been implemented has placed “huge pressure” on the Assessment of Needs (AON) process with the resulting hold up in access to services “adding to problems coming down the line."
A report by the Children's Ombudsman in October found that the AON system was leaving many children with a disability waiting "years" for services they require.
The hearing also heard about the difficult decisions families must face when it comes to deciding whether to educate their child in so-called mainstream schools or special schools.
Lorraine Dempsey of Inclusion Ireland said it was "bitter" that families are having to make such decisions based on a lack of supports in mainstream settings.
Referring to Ms Turley, who had spoken earlier in the day, Ms Dempsey said she had been moved to a special school by her parents, which was not her own choice, due to a lack of supports at the mainstream school she had been attending.
"Her parents made a difficult decision to move her and that wasn't necessarily in the best interests of the child. It wasn't necessarily in the best interest of us as a society and for children within her class."
"Inclusion starts with education and if children aren't educated alongside other children with disabilities, they don't get to see them. And when children with disabilities grow up into adults with disabilities, sometimes those adults are further segregated and they're not seen, they're not heard, they're not part of our community."
"If we're going to pay this forward so that we can improve employment prospects for people with disabilities, it starts here."