Thursday, 29 April 2021
National Autism Empowerment Strategy: Motion [Private Members]
This motion deals with a matter that, as a parent of a child with autism, is close to my heart. Today, I speak as a Teachta but also as a mother directly impacted by this issue. The provision for autism services - by which I mean the distinct lack of provision for autism services - is one of the main reasons I felt compelled to enter the political domain in the first instance. As all parents will know, as a parent one wants to protect one's children and to surround them with as much love and support as possible. It is hard, therefore, to watch them struggle and suffer and be unable to fully enjoy their lives. As a parent, one knows that one cannot right every wrong, but to live in a society where the Government does not get it and consistently does not prioritise autism services adds insult to injury.
A motion was tabled in 2019 by my colleague, Deputy Funchion, on an autism empowerment strategy. That motion was the result of significant research that drew on proven international best practice models and approaches, particularly the Persons within the Autism Spectrum (Empowerment) Act 2016 in Malta, which established a national autism advisory council in that country. Deputy Funchion's motion set out a clear framework for taking equivalent progressive strides in our society, including the establishment of an all-party Oireachtas committee that would be mandated to produce an autism empowerment strategy for Ireland within six months. The motion was passed with strong cross-party support but the committee was never established. What message did it send out when that vote was not followed through with action? In fact, that lack of action is a recurrent theme and it cannot continue. It leaves people furious and frustrated, and rightly so, to see their Government fail them time and again. The very political system set up to protect their interests denies them their rights. That needs to stop.
Action must be taken to address the waiting times for the assessment of needs for children in this State. A European-wide study on ASD and early intervention published in 2018 identified that 50% of parents have access to intervention within one to three months of diagnosis. Meanwhile, the average waiting time in Ireland to access an assessment is a whopping 19 months. This is an indictment of the State, which is falling drastically short of the time parameters set out in the Disability Act 2005. That legislation is now 16 years old and is still not fully commenced. There is a recurring theme.
Time is moving on but the services for people with autism in this State are not. What is the point of law if it is not applied? The 2020 report by the Ombudsman for Children, entitled Unmet Needs, re-articulated the urgent need for the commencement of the 2005 Act and changes to the Education for Persons with Special Educational Needs Act 2004. The latter is 17 years old and, like the 2005 legislation, has not been fully implemented. In a joint Oireachtas committee meeting to discuss the ombudsman's report, my colleague, An Teachta Ward, pointed out that in the North - in Derry, for example - children are given intervention while they await assessment. They and their developmental needs do not pay a price because of the inefficiency of public provision. All of Ireland's children should be treated equally in this regard.