Peadar Tóibín (Meath West, Aontú) | Oireachtas source

Gabhaim buíochas leis an Teachta Seán Canney as an obair atá déanta aige ar an mBille seo.

This Bill was initiated on 10 May 2017. It is now four years since its introduction and the Bill is only on Second Stage. The issue of services and basic rights for Irish people with autism is one of the subjects that gets plenty of lip service in Leinster House, but there is little action in support of people with autism. Anyone who has spoken to parents, families or friends will tell us the most heartbreaking stories. As elected representatives, when we knock on doors we find that in one in ten or 15 houses there is a heartbreaking story behind the door of a family dealing with a lack of services for a child.

Even getting an assessment for autism take many long years on waiting lists. This can obviously directly inhibit the supports and early intervention that are crucial for the development of a child. Families are often forced to go down the route of private assessments for children. For children under three years of age, that can cost as much as €1,500. For a child over three years of age, the cost can be €950. For most people, that is an extremely high cost. For many, it is a preventative cost in terms of getting an assessment in the first place. Colleagues of mine, including Councillors Sarah O'Reilly and Emer Tóibín, have done vital work to expose the two and three-year waiting lists for assessments and have tried to ensure that parents get what they need.

However, once an assessment has been achieved many families will tell us that they face a cliff edge. Very quickly, services fall away and are not available when they are needed. Parents in my constituency have been told to set up their own supports without any help from the Department. One cohort of parents was told to set up their own school for children with special needs and to fundraise for it themselves.

A good example of this was the establishment of Stepping Stones School in County Meath, which caters for children with special needs. The school has ensured many children with autism can get targeted tailored education when they need it. However, with negligible Government supports the school can only do so much. Teachers and children have been packed like sardines into tiny prefabricated classrooms with rotting floors, holes in walls and rat infestations. One parent who was involved in the establishment of the school told me the school had originally been designed as a school of dreams, but increasingly it was becoming a house of horrors as the building became increasingly unsafe for students and staff alike. The promises to help that school go back as far as Noel Dempsey, but permanent accommodation has only been found this year. I welcome the fact it has been found, but it illustrates the long struggle for families to get what they are entitled to.

It is all too typical for families who have children with autism that their parents are pushed to such extremes just to provide services that they are entitled to. Autism support groups I have spoken to have described waiting lists and services that are going nowhere. Another set of parents was told that their child would be discharged from child services at 18 years of age, something I hear regularly. Once a child hits 18 years of age, he or she is no longer recognised in terms of proper services and supports and hits another cliff edge. Covid-19 has obviously worsened this state of affairs.

A survey of childcare professionals revealed that 74% of providers had confessed to seeing regression in children with special needs and disabilities. The shutting down of schools and supports throughout the pandemic hit these children the hardest. The Government has done very little to try to mitigate the impact and undo that damage.

This Bill is an important first step in the right direction to help to ensure that people with autism get the support they need from their Government. I urge the Minister of State to do the best she can. I understand there are difficulties with funding for services, but if we are to judge a State or nation on anything, it is on the basis of how it treats people who are most in need. If the truth were told in this Chamber, this country has significantly let down children and people with autism for decades. It does not reflect well on us as a people. Things have to change. If we are to ensure children with autism achieve their full potential, and there is much potential there, the only way that can be done is through early assessment and intervention and proper supports for them throughout their lives.

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