Senator Miche?l Carrigy:

I am very grateful to the Dáil Business Committee for selecting the final report of the joint committee for debate this afternoon. I am also grateful for the opportunity to speak here as Chairperson of the former committee. I thank Deputy Tully for moving the motion and I thank all my fellow members of the joint committee, whose hard work is reflected in this very comprehensive report. I also thank my fellow members of the all-party parliamentary group, who have continued the work of the joint committee by advocating for the implementation of the final report. Both committees are a testament to the commitment of the Members across both Houses of the Oireachtas to improving the lives of autistic people and their families in Ireland. However, all this work will be of little importance unless we see the implementation of the report and a real, material improvement in the provision of services to the entire autistic community. For this reason, I echo the sentiments of Deputy Tully in identifying the report's first recommendation as one of its most important. It is to enact legislation which requires the State to publish an autism strategy every three years and which holds the Minister with responsibility for disabilities of the day accountable for its implementation.

I welcome the publication of the draft autism innovation strategy and look forward to the publication of the final strategy. I also appreciate the continuing work of the oversight group in steering this project and the work it has undertaken in ensuring the strategy's implementation. However, the committee heard evidence from many witnesses which would suggest that the issues affecting public services and which impact disproportionately the autistic community cannot be resolved in the lifetime of a single strategy. Many autistic self-advocates and their families will be asking themselves how they can trust that future governments will continue the work of the Minister of State, Deputy Rabbitte, and the innovation strategy oversight group. It must be borne in mind that much of the progress which has been achieved to date in respect of ensuring services for autistic people are on the agenda is due to the hard work of autistic self-advocates and the families of autistic young people. It will be bitterly disappointing for the community and their loved ones if we did not grasp the opportunity to give a statutory basis to the strategy to ensure the rights of autistic people are not neglected again in the future.

I acknowledge that in the lifetime of the Joint Committee on Autism and to date we have seen some progress in actioning a number of the recommendations. I thank the Ceann Comhairle, the Houses of the Oireachtas Commission, Róisín Deery, Breda Burke and Róisín Sweeney from the equality, diversity and inclusion team of the Oireachtas, the committee secretariat, the entire parliamentary community, and Zarah and the team from AsIAm - and I acknowledge that Michael, Adam and Niamh from AsIAm are in the Public Gallery - for their work with the EDI team and the training for the more than 1,000 members of the parliamentary community that undertook an autism awareness training programme. I thank them also for their work in making Leinster House the parliament with the highest standard in the world as an autism-friendly parliament. This achievement sends out a signal to all public service providers that inclusivity of autistic people is valuable and an achievable goal. I call on all Departments to follow the lead that has been shown by the Houses of the Oireachtas.

Deputy Tully referred to the Action Plan for Disability Services 2024-2026.

The action plan is a positive step in the right direction and reflects much of what the committee heard throughout the course of its engagements with the autistic community and with professionals in areas such as disability services and education and with carers and supporters of autistic people. I welcome many of the plan's commitments, some of which are reflected in the committee's final report, including sponsored third level courses in therapy with a commitment to working in disability services; to standardise assessments and clinical pathways; to improve transition planning for school-leavers; to review the available employment supports with a view to addressing the issue of unemployment of autistic and disabled people; and to provide clear information for autistic people regarding disability services and other supports. I hope future policy documents concerning autism and disability, including this strategy, when finalised, will take full account of the work and recommendations of our report.

On education, I note that aspects of the committee's interim report on the summer programme were implemented last year and we saw some improvements in that area. However, these improvements are not sufficient in the current context, with so many children in most need of the summer programme unable to access it. It is for this reason the committee's final report recommends a right-based approach to the summer programme be adopted by Government and an all in-school programme be deemed as an essential service. The reality that the summer programme is essential for autistic children and their families was made absolutely clear to the committee by the families who shared with us their experiences in recent years. Parents are heartbroken as they witness their children's behavioural, communicative and academic regression. They are exhausted as they try to manage extremely challenging circumstances brought about by this annual cessation of a much-needed routine for their autistic children. I call on all special schools to provide a summer programme in summer 2024.

I also welcome the commitment to implement measures regarding transition planning, which are referenced in the action plan for disability services. Planning and managing transition is crucial for many autistic people, particularly children and young people. It is vital that supports are put in place to assist schools in managing the transition of pupils from primary to secondary and secondary beyond into apprenticeship, higher education and work. At present, the unemployment rate among autistic people is 80%, according to AsIAm. Planning and managing transitions is the first step to making our schools, higher education institutes and workplaces more accessible to autistic people. However, it is vital that these settings are fully welcoming and supportive of the autistic community. As Adam Harris told the committee, one cannot create an inclusive educational system simply by permitting people to enter the building. To this end, the report makes a number of recommendations to Government on how to make education, higher education and employment more accessible and autism-friendly. These include providing funding and guidelines to schools and higher education institutes to build and modify their premises in line with the principles of universal design; providing autism training for prospective and qualified teaching staff; establishing a pathway to accessing alternative and augmentative communication devices and assistive technology; and establishing public employment services that build on good practice in disability employment, such as the Trinity Centre for People with Intellectual Disabilities. This service would link autistic people with employers and provide those employers with supports to ensure autistic people succeed in the workplace. By supporting the autistic community in accessing education, higher education and employment, we can address the issue of unemployment among the autistic community and reduce poverty. I wish to put on record my thanks to the Minister, Deputy Harris, who recently announced ten universities that are providing third level courses for young teenagers with intellectual disabilities and autism. I also recognise the announcement last week by the Minister of State, Deputy Rabbitte, of more than 500 devices which are being provided to families with support training through AsIAm for young children with speech and language difficulties.

Inaccessibility of public services to the autistic community has resulted in families relying on services provided by the private sector, which is also unable to meet demand. This has always been a major contributing factor to the exorbitantly high costs associated with disability and autism in particular. The committee was shocked to hear evidence from Dr. Áine Roddy that the average cost to families resulting from expenses associated with autism was €28,000 per child. These costs were accrued as a result of accessing private services but also loss of income and informal care. By contrast, the same study found the average State expenditure was €14,000. The most crucial step that must be taken is to address these costs for autistic people and their families. It is to build capacity in the public sector to provide services, including those I referenced earlier, along with respite services and more. The report also recommends the introduction of nine means-tested, targeted cost-of-disability payments for autistic people, disabled people and their carers, who have high levels of expenditure as a result of their diagnosis - specific, targeted supports for those with the highest additional costs due to disability or autism diagnosis.

I put on the record that I welcome the progress made thus far in reviewing current policies in line with the final report. However, we are only at the beginning of this process. I hope the recommendations of the final report will be implemented in full. I ask that the Government adopt and implement the recommendations of this report.

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