Seán Canney (Galway East, Independent)
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I want to first say that Deputy Denis Naughten is with me today. Both of us represent the regional group of independent deputies. I thank the committee for the invitation to present today on the Autism Spectrum Disorder Bill 2017. This Bill was first introduced by former Senator and former Minister for Health, James Reilly. It passed all Stages in the Seanad but fell on the dissolution of the Dáil in January 2020. The Bill was reintroduced in the Dáil by the regional group of Deputies and debated on Second Stage on 20 October 2021. An amendment by the Government was accepted, which deemed the Bill would be read a second time on 20 October 2022, to allow for the development and implementation of a national autism innovation strategy in line with commitments under the programme for Government. The Bill passed Second Stage on 20 October 2022. This committee refused to waive pre–Committee Stage scrutiny of the Autism Spectrum Disorder Bill 2017. This was unprecedented, as the Bill had passed all stages in the Seanad and had passed Second Stage in the Dáil.

Following this, I received a copy of a letter sent to the Business Committee confirming this refusal and indicating that the joint committee would scrutinise the Bill in February or March 2023. I express my disappointment that it has taken a year from 20 October to commence the scrutiny of the Bill. Some concerns were expressed about specific terminology within the Bill. As advised by my colleague Deputy Denis Naughten in a letter to the Chair dated 1 December 2022, significant amendments have been drafted and are ready for publication. These have been drafted amid detailed consultations with stakeholders and representative bodies advocating for autistic people.

The Bill seeks to provide for development and implementation of a cross-departmental multi-agency strategy to provide and implement services for autistic people. The regional group of Deputies continues to highlight that autism is not a health issue but a human rights issue. 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. On average, the annual cost per child for families amounted to more than €28,000 related to 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. The members of the regional group intend to work with all Oireachtas parties and stakeholders to ensure this legislation is fit for purpose and successfully progresses through the next Stages in the Dáil. It will be a game changer for autistic people and will enshrine their rights in law.