Autism, and ensuring that services exist for people on the spectrum, is a human rights issue, not a health issue Galway TD Seán Canney has said.
The Galway East TD was speaking on behalf of the Regional Group of TDs during a recent debate on the Autism Spectrum Disorder Bill 2017.
The bill aims to provide for the development and implementation of a cross-departmental multi-agency Autism Spectrum Disorder Strategy, and related issues.
It is currently at the Pre-Committee Stage, undergoing detailed scrutiny of its contents and multiple amendments at the Joint Committee On Children, Equality, Disability, Integration And Youth.
“The regional group of Deputies continues to highlight that autism is not a health issue but a human rights issue,” Seán Canney said to the committee.
“No strategy has been put in place since the European Commission approved the charter of rights for people with autism in 1996.”
“The charter states that autistic people should have the same rights enjoyed by all EU citizens, and these rights should be enforced by legislation. This has yet to happen in Ireland.”
Roscommon-Galway TD Denis Naughten added that legislation is needed to ensure that the rights of people with autism are enshrined in law.
He pointed out that the Assessment of Need process contained in the Disability Act 2005 was opposed by government departments at the time.
“The reality is, whether we like it or not, that any rights and services that people with any form of disability have got in this country are there because legislation was enacted.”
“What would happen if it was not enshrined in law? What would be the chances of people getting access to this service today? They would not. That is the reality.”
“Would it be better or worse across the broad spectrum of disabilities and in regard specifically to people with autism if there was legislation enshrining rights for them?”
Deputy Canney added that supports are currently falling short, resulting in a significant financial burden on families.
Families who have a child with autism incur annual expenses of roughly €28,000 from private services, lost income, and informal care.
“Service provision for autistic people should not be discretionary. It should be a right protected in our legislation. For this State, doing nothing will cost more in the long run.”
“Financial pressure is acutely felt by families who assume full-time caring roles for their autistic children, reporting that existing social welfare payments are insufficient to cover therapy costs and additional supports.”
Mr. Niall Brunell, Principal Officer for Disability Policy at the Department, said that the government intends to deliver a draft autism strategy by the end of the year.
He added that any strategy which aims to bolster services must not be overly rigid, as our medical understanding of autism is still evolving.
“We need to ensure our responses can evolve with our understanding, are operationally practicable, and advanced on the basis and principle of equal provision.”
“It is with this approach in mind that any consideration of the proposed Autism Spectrum Disorder Bill should take place.”
“At its core the Bill is a laudable document that seeks to improve access to services, foster greater understanding of autism, and advance the social inclusion of autistic people.”
“The Department shares these goals, but does not necessarily consider legislation to be the most appropriate means of advancing those goals.”
He also stated that there is a legal risk that could come from enshrining in law “rights and entitlements that are not enjoyed by all disabled persons” for people with autism.
It also risks creating a duplication of processes in the assessment of needs by creating parallel channels for services and assessments.
