Eileen Flynn (Independent)
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This evening session will address the Final Report of the Joint Committee on Autism. I ask Senator Carrigy to move the motion.

Micheál Carrigy (Fine Gael)
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I move:

That Seanad Éireann shall take note of the Report of the Joint Committee on Autism entitled ‘Final Report of the Joint Committee on Autism’, copies of which were laid before Seanad Éireann on 14th June, 2023.

Eileen Flynn (Independent)
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I thank the Senator. The debate will follow the normal pattern where the Senator will have 12 minutes to speak on the report.

Micheál Carrigy (Fine Gael)
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I will be sharing my time with my seconder, Senator Joe O'Reilly.

Eileen Flynn (Independent)
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The Senator does not have to share his time so he has 12 minutes speaking time.

Micheál Carrigy (Fine Gael)
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The Minister of State is very welcome. I am grateful for this opportunity to speak on this debate and before I start, I thank my colleagues in Fine Gael for putting forward the report as Private Members' business but I want to also thank the fellow members of the Joint Committee on Autism who worked so diligently on that report over a 15 month period. I believe that the collaborative and considered approach we took in all of our engagements is reflected in this report.

It is important to acknowledge the contributions made by many witnesses. There was expertise and lived experience which informed the committee's work including teachers, psychologists, therapists and all professionals who support the autistic community, the families and carers of autistic people and, more important, the autistic self-advocates who shared powerful insights with the committee in what was often a very challenging set of circumstances. Their contributions have resulted in this comprehensive report and, indeed, recommendations.

The committee's final report made 109 recommendations, all of which must be implemented by the Government as soon as possible. I will focus on some of the key recommendations from the report.

One of the first and most important is the recommendation that calls on the Government to enact legislation which requires the State to publish an autism strategy every three years, establish a committee or monitoring group featuring autistic people to participate in drafting and monitoring the strategy, and to require the Minister for disabilities of the day to address both Houses of the Oireachtas annually to provide an update regarding its progress. I pay tribute to the Minister of State herself on the publication of the Autism Innovation Strategy last August. It is my belief, however, that it is essential that there is legislation in place to guarantee its implementation in years to come. Several autistic self-advocates, including Adam Harrison from AsIAm, have called for legislation to underpin the strategy. I welcome Adam and his colleagues from AsIAm here today.

The autistic community in Ireland has been repeatedly let down by the State. Many autistic people and their families will wonder whether they can trust if the services will ever improve. Legislation will compel the Minister of the day to monitor and implement a national autism strategy and will go some way to rebuilding the trust and to providing the services that are so desperately needed.

There is a particularly urgent need for properly resourced health services for the autistic community. The committee heard shocking evidence from the self-advocates and from healthcare professionals regarding the inadequate provision of health care and mental health supports to the autistic community. Dr. Mary Doherty, an autistic self-advocate and health care professional told the committee that autistic individuals have poor physical and mental health compared to the general population and the life expectancy of autistic people is potentially reduced by 16 to 30 years. These are stark figures which tell us of the need for urgent action in respect of healthcare provision for the autistic community. Among the recommendations put forward in the report are: the introduction of mandatory autism training for health and social care workers in the HSE and in section 38 and section 39 organisations; the provision of funding to health service providers to make their services more autism friendly; and the creation of a pathway for multidisciplinary support, including mental health services for autistic children and adults.

With regard to disability services in the child and adolescent mental health services, CAMHS, at present, disability services are among the least accessible services for autistic people in Ireland. Chronic under-resourcing under the Progressing Disability Services for Children and Young People Programme, PDS, model has resulted in young autistic people facing extremely lengthy wait times to access assessment and therapies. Ageing out into adulthood, few, if any, services are available to them and they are forced to seek services in a private market which is expensive and where proper oversight and regulation cannot be guaranteed. Some 19 of the report's recommendations concern disability services and each of these recommendations seek to remedy distinct issues which impact autistic children and adults who are trying to access vital disability services.

The first of this suite of recommendations calls for the establishment of a single clear entry point to children's disability services and CAMHS. At present, autistic children are passed between the services and some are lost. The committee heard from several witnesses that CAMHS refuses to work with children who have a primary diagnosis of autism on the basis that CAMHS are unsuitable for them. However, no alternative services are accessible to autistic children. It is essential that the HSE provides a single point of entry for autistic children where they may access disability services and mental health services in tandem. We must always be mindful that along with making disability and mental health services more accessible, that we must build the capacity in these services to provide assessment and therapies to autistic young people. The committee heard from the HSE that the average national vacancy rate of physicians in the children's disability network teams, CDNTs is 34% with a vacancy rate as high as 43% in some community healthcare organisations, CHOs.It is clear that the challenges around staffing present some of the main obstacles in providing a high-quality and timely service to suit the autistic community. It is for this reason that the report makes a number of reasonable and achievable recommendations to address the staffing crisis in disability services. These include actions that will have an immediate impact on waiting lists for disability services, as well as actions needed to build capacity in the long term, among which are the redistribution resources between staff working on assessment of need and those implementing therapeutic services, the incentivisation of potential staff who are abroad to work in the public health sector and the provision of financial support to families who access assessments and supports privately until capacity has been built in the public sector. The report also recognises that there are no overnight solutions to the current crisis and for this reason the committee made a number of recommendations that will bear results in the future, including initiating campaigns in secondary schools and third-level institutions to promote careers in disability services, initiating work-placing schemes at third-level, working with profession bodies such as the occupational therapists and psychologist to inform a long-term strategy to address the staffing issues in disability services and developing opportunities for career progression within disability services.

It is of particular importance that the HSE works to build career pathways. Otherwise, it will continue to lose hardworking, educated staff to other services areas, the private sector and, indeed, other countries. Forward planning is an essential foundation block for building capacity in disability services and restoring trust for all services provided by the State. The report reflects on contributions from professionals who work directly with young autistic children, including representatives from the AOTI, IASLT and the PSI. These witnesses told the committee that little or no effort was made by the HSE to take their views into account when designing the PDS model. The report suggests the HSE learns from the challenges that have arisen from the roll-out of PDS and embeds a culture of collaboration and consultation with therapy, psychology and nursing staff, as well as with their representative bodies. Many self-advocates and their families told us that one of the key issues with PDS was the removal of therapeutic services from the school setting. A provision of therapeutic services to autistic pupils in school has said to have benefited therapists, teachers and families and, more importantly, young autistic people themselves. I welcome the work done by the Minister of State in returning the therapists to the schools in the recent past but more needs to come. It is with this principle in mind that the committee recommended the PDS and school inclusion model be integrated to ensure both in-school and community-based services are available to young autistic people. The provision of in-school therapies to those pupils who need them is an important first step in enabling autistic young people to succeed in school and beyond.

I wish to acknowledge that in the lifetime of the committee and to date, we have seen some, indeed, a lot, of progress. Once again, I acknowledge on the record that the Minister of State has done a huge volume of work in this area. In these Houses, I thank the Ceann Comhairle, Houses of the Oireachtas Commission, equality, diversity and inclusion, EDI, team, entire parliamentary community and the committee secretariat for the work in making Leinster House one of the world's first autism-friendly Parliament. This achievement sends a signal to all public service providers that inclusivity of autistic people is valuable and a goal that was worth achieving.

The action plan for disability services is a positive step in the right direction that reflects much of what the joint committee heard throughout its engagements with the autistic community and with professionals in areas such as disability services, education and with carers and supporters of young autistic people. I welcome many of the plans and commitments, some of which are reflected in the committee's final report including sponsoring third level courses in therapy with a commitment to working in disabilities services; standardising assessments and clinical pathways; improving transition planning for school-leavers; reviewing the available employment supports for autistic and disabled people with a view to addressing the issue of unemployment of autistic and disabled people; and providing clear information for autistic people regarding disability services and other supports. I hope future policy documents concerning autism and disability, including the autism strategy, will take full account of the work and the recommendations. A significant number of the recommendations made by the committee form a major part of the strategy.

Returning to the summer programme, aspects of the committee's interim report were implemented over the past two years and it has seen some improvements. However, these improvements are not sufficient in the current context for so many children. These are children who are mostly unable to access it. I welcome the Government's support of putting €40 million a year towards that programme. It is for this reason that the committee's final report recommends a rights-based approach be adopted by Government and that an in-school programme be deemed an essential service. The reality is that the programme is absolutely essential to autistic children and their families. This was made quite clear to the committee by the families who shared with us their experiences in recent years. Parents are heartbroken as they witness their child's behavioural, communicative and academic regression. They are exhausted as they try to manage extremely challenging circumstances that are brought about by this annual cessation of much-needed routine for their children. For 2025, I call on every special school in the country to provide an in-school summer programme at a minimum.

I welcome the commitments to implement measures relating to transition planning referenced in the Action Plan for Disability Services 2024-2026. Planning and managing transitions is crucial for many autistic people, particularly children. It is vital that supports are put in place to assist schools in managing the transition of pupils from primary to secondary and from secondary beyond into apprenticeships, higher education and work. At present, the unemployment or underemployment rate among young autistic people is 80%. This was stated in a report published by AsIAm recently. Planning and managing transitions is the first step to making our schools, higher education institutions and workplaces more accessible to autistic people. I take this opportunity to thank the Taoiseach - the Minister as he was at the time - and the Minister, Deputy Donovan, for their work in ensuring 11 universities are now providing third level courses for kids with intellectual disabilities and autism, eight of which started last month and three more of which will start in January. It is fantastic as a parent of a young autistic to know that my son will have an opportunity to go to college. That was very limited a couple of years ago but now every child will have that opportunity. I look forward to that being expanded.

It is vital that these settings are fully welcoming and supportive of the autistic community. As Adam Harris told the committee, an inclusive educational system cannot be created simply by permitting people to enter the building; we must do work. Some work has started but more is to be done. To this end, the report makes a number of recommendations to Government on how to make education 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 service that builds on good practice in disability employment, such as the Trinity Centre for People with Intellectual Disabilities. This service would link autistic people to 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 and underemployment among the autistic community and reduce poverty.

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 the demand. This has been a major contributing factor to the high costs associated with disability and with 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 year. These costs were accrued as a result of accessing private services, loss of income and informal care. By contrast, the same study found the average annual expenditure on autism-related health, social and educational resources was €14,000. In respect of autistic adults, The Cost of Disability in Ireland report commissioned by the Department of Social Protection found that those who identified themselves within the category of autism or ADHD, reported an average of €14,000 in additional costs related to their disability. The most crucial step that must be taken is to address these costs for autistic people is to build capacity in the public sector to provide services, including those I referenced earlier, along with respite and more. In addition to this, the report recommends a non-means-test, targeted cost-of-disability payment for autistic people, disabled people and their carers, who have high levels of expenditure as a result of their diagnosis and specific, targeted supports for those with the highest additional costs due to disability or an autism diagnosis. I put on record my thanks, as I did earlier, for the progress that has been made across numerous areas of the report. However, I believe we are only at the very beginning of this process. I hope the recommendations from the final report of the Joint Committee on Autism will be implemented in full. That is a commitment I have given. As Senators will know, the report was published in June 2023. In June 2024, we carried out a review of the report with all the Departments and I hope that will be published in the next few weeks to show where we are on those 109 recommendations. In June 2025 - I plan to be here then - I will be carrying out a further review to see how many of those recommendations have been implemented. This report needs to be implemented in full and not left on a shelf gathering dust. Too many families, young adults and children are suffering. More will continue to suffer if we do not implement the report's recommendations. I call on the Government to fully support the implementation of the recommendations.

Eileen Flynn (Independent)
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Before we move on to the next speaker, I thank Senator Carrigy for his dedication, all his hard work on the autism committee and his commitment to bringing about change. Most importantly, I thank him for being determined and committed to put autistic children and adults on the agenda in Leinster House. I thank him for that and for being a very fair and honest Chair.

I welcome our guests from AsIAm, Michael O’Flanagan and Adam Harris.

Joe O'Reilly (Fine Gael)
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I will begin where the Acting Chair left off. I concur with her remarks about my colleague Senator Carrigy who has taken this as his personal crusade in his first term in the Seanad. It is truly impressive that he has achieved so much in this area in one term. I know he is particularly committed to it. His achievements are mammoth and I congratulate him on that. I am certainly proud to be a colleague of his.

I welcome the Minister of State. I have been at meetings with her with a number of groups - I will come to some of that in a minute - and I acknowledge her absolute commitment to getting this right. Nobody can detract from that. That is the fundamental starting point and I commend her on that. I also join the Acting Chairperson in welcoming the representatives from AsIAm in the Gallery. It is good to have them here as particularly concerned central stakeholders. I acknowledge that the Taoiseach has set up a special Cabinet sub-committee to recognise people of different abilities and to see that something is done to support people of all diverse abilities.

Obviously, the staffing level is a major issue and I will be very interested to hear the Minister of State's responses here. I will be parochial, but I will only visit the parochial to make a general point. Our local CDNT is based in Enable Ireland in Rathcorick, County Cavan. The Minister of State has been there in my company and I have subsequently met her with groups from there. She can correct me if I am wrong, but this is on reports to the parents forum. There are 14 vacancies for professionals there, which is a significant number. With 520 children, the parents would argue, some people would say in excess of 400, at the moment in our local one in Cavan - this replicates itself nationally - there are two physios, two speech and language therapists, five occupational therapists, no psychologist and a half-time social worker. The social worker matters to the parents. In total, including various support workers, ancillary staff etc., there are 17 staff with that number in Rathcorick, County Cavan. There are currently 14 vacancies.

Regarding the 14 vacancies, what are the Government's proposals for a feeder system so that the professionals will become available? How do we make working here more attractive? How do we bridge the final divide between the section 39 workers and the HSE workers? How do we smooth that one out? What do we do here? We do not want to get too lateral here. However, I think that housing is an issue in attracting professionals to come here and stay here. There is potential to create local purpose-built accommodation for young people where institutions have available land. Certainly this should be done on hospital sites for student nurses. It was done for generations and could work. We need to be imaginative. Of course, we need to go on solving the housing problem as an holistic issue. I ask the Minister of State for her opinion on the housing problem as it is relevant to this question. Is there anything we could do to make it attractive for professionals to come here?

There is also an issue with retention of professionals. There is considerable attrition. I am not sure that there is enough assessment of why they leave. The technical term for this evaluation is an exit poll. I had only understood that to be to do with elections. However, I gather an exit poll is where professionals are asked why they are leaving and that is analysed to try to address that. Staffing is a major issue. I would like the Minister of State to respond on staffing in the particular - the instance I have raised - and as a general issue.

I mentioned section 39 workers. I want to mention the assessments. If I understand it correctly, the waiting lists have improved somewhat. However if my information is correct - I would be delighted to be proven wrong because nobody wants to be right about this stuff - people are still waiting between six and ten months for an assessment, which is too long, and only the rich can access them privately. Senator Carrigy said one of the recommendations of the report was to provide money to help people to access assessments privately and supplement maybe. We need to look at imaginative responses there.

I will finish with this because my time is restricted. I find the primary school units for autism brilliant. I am a former primary teacher and I go to the openings of these units, sensory rooms and so on. They are extraordinarily good and effective. We also need those at second level. We have some at second level and then we need the-----

Eileen Flynn (Independent)
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I am sorry, Senator, we have to give everybody the opportunity to speak.

Joe O'Reilly (Fine Gael)
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I would be interested to hear the Minister of State's responses on the specifics and the general. I hope a good discussion can arise. I do not think there is one person in the country who is not totally committed to this. Through prudent management of the economy over years, we now have the money to do it. Money should be thrown at the problem insofar as money will resolve it, but there are other issues as well.

Eileen Flynn (Independent)
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I would be the first to admit that this is a very important issue, but we must be fair to everybody. I call Senator Clonan who is sharing time with Senator Boyhan.

Tom Clonan (Independent)
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We will take six minutes each if that is okay.

Eileen Flynn (Independent)
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The Senators have eight minutes between them, so it will be four minutes each.

Tom Clonan (Independent)
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In that case, I had better be quick.

I thank the Minister of State for coming to the House. I welcome the publication of the report and thank Senator Carrigy for all the work he has done on this and all my colleagues who have worked with him on it. His group was established prior to my election. I am delighted that all after that work, it has come to fruition today. I also thank the Minister of State for putting pressure on her colleagues in Cabinet to reach this agreement to fully ratify the optional protocol on the UN Convention on the Rights of Persons with Disabilities. It is a signal achievement on her part. Whenever the Government decides to go to the polls, that will be a long-standing part of the Minister's political legacy. I have no doubt that her political life will continue. These are two very positive developments and I welcome them. I also welcome our guests from AsIAm. It is emblematic that there is a coalition of people - people from civil society and politicians from all the political parties, from the Labour Party and Sinn Féin to Fianna Fáil, Fine Gael and the Green Party - in which everybody is on the same page in relation to our citizens with additional needs. However, we are 30 years behind the rest of Europe in this regard. Since being elected I have visited a number of parliaments in Europe and the UK to look at their legislation with regard to the fundamental human rights of disabled citizens, whether that be by way of neurodivergence or being elderly. The World Health Organization tells us that every single citizen, all of us here, will be disabled at some point and for an average of eight years in our lives. For a lot of us, that comes at the end of life but it also impacts people who are recovering from stroke, road traffic collisions or acquired brain injuries. We are about 30 years behind everybody else in that regard, legislatively, in not having a legal right to the treatments, supports and therapies that we have all enumerated here, be it in the school setting, a clinical setting or the social model, to allow us to live autonomous, happy and fulfilled lives in the community and in the political, cultural and economic life of the State.

I echo what previous speakers said about the concerns raised about PDS and the CDNTs across all of the CHOs. My constituency is countrywide; it is in England, Scotland, Wales, Northern Ireland, Australia and Canada. I get a lot of correspondence from disabled citizens. In Ireland, the recurring themes are unmet need and families in crisis.

I appreciate Senator Carrigy's investment in this issue. Like me, he is a parent and a carer for somebody with additional needs who just needs that little bit of scaffolding to allow them to live a full, autonomous life. However, we are behind the times. For us as a family, the crisis really hit during the financial crash. I want to give a bit of a timeline here. When the financial crash happened, the Government that was elected in 2011 of necessity put in place austerity measures. Unfortunately, the most vulnerable people in Ireland were impacted disproportionately by those austerity measures. That is when my son's supports, little as they were, collapsed. If the Chair allows, I just want to finish this.

Victor Boyhan (Independent)
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If the Senator needs to take the full eight minutes, I will speak later.

Tom Clonan (Independent)
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That is when my advocacy as a parent began because in Ireland, as a parent and carer and as a family who experience disability, you become de facto an advocate. I approached the line Minister at the time. I never got to speak to the Minister for Health. I would characterise the response then, in 2011, as one of hostility and quite confrontational. The attitude was one of “So, you want to skip the queue”, “You are a queue jumper” and “I am your best friend now, am I?”. It was that kind of stuff. I grew up in Finglas. I was in the Army for 12 years and I know what rough is because it was dog rough. If I fast-forward to 2016, there was a new Government and a new Minister of State with responsibility for disabilities, Finian McGrath, was appointed. In that five-year period the attitude changed completely. It went from hostility and confrontation to one of the listening ear. The Minister of State, Deputy Rabbitte, was appointed in 2020 and that progression has improved even further because she has done everything in her power; she is not just a listening ear but a woman of action. I know that she has experienced, because I have been in the room with her when she experienced it, resistance and the frustration of not being able to achieve perhaps everything she wants to achieve. There was, however, no lack of effort and investment. I thank the Minister of State and commend her on that.

When I got in here, the first day I was elected, I said I wanted to do three things. I wanted to make friends, get a coalition of people who would be willing to work together on disability matters and learn. I have learned a great deal. I would like to think that Senator McGreehan, the Fianna Fáil spokesperson on disability, and Senator Seery Kearney are friends. In both of them I see people who are fully invested and passionate about the rights of persons with disability. Senator Carrigy, in his own modest and understated way has also worked for all of us, all of our community. People like him are the reason people like me can sleep at night. I mean that very sincerely and I acknowledge that. I am, however, making the broader point that as we approach a new administration, I hope that progression continues. The UN convention is now fully ratified. I hope that in the next administration we can get the fundamental human rights-based legislation enacted so that we can address all the issues around recruitment, retention and assessment of needs and then all the supports and services that are routinely available in other jurisdictions. We can do this. Is féidir linn. I am sorry for going over time. I am sorry, Senator Boyhan, that I have taken more time than I had intended.

Victor Boyhan (Independent)
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I will speak in the next round.

Tom Clonan (Independent)
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I just wanted to acknowledge the work that has been done. I feel a sea change in relation to our community. All of us need to come together. Whether it is neurodivergence, intellectual or physical disability, we have the most powerful lobby in the country. If disabled persons' organisations and parents like me who are mandated under the UNCRPD to advocate for parents come together and work together, it will be the most powerful, unstoppable movement in this Republic and the last bastion of fundamental human rights, the last group of people to be vindicated and emancipated because that is what it is.

Erin McGreehan (Fianna Fail)
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The Minister of State is very welcome to the House. I congratulate all my colleagues who worked incredibly hard on this report. Many other colleagues who will speak after me will congratulate Senator Micheál Carrigy on his work. He led the way, which is something he should be very proud of. As someone who was on the sidelines looking in, I am proud that this Oireachtas, in this term, has done such a report. Congratulations to Senator Carrigy.

I welcome the opportunity to speak in this discussion. Action on autism was a commitment in the programme for Government. I congratulate the Minister of State on her stellar work and huge commitment to this issue. On World Autism Awareness Day 2021, she announced the Government's intention to develop a national strategy on autism. It has to be said very clearly that the Minister of State and the Government remain very committed to improving the lives of autistic people. This commitment was underpinned recently by the launch of the autism innovation strategy. While the strategy was developed prior to the committee's report being finalised, the committee's recommendations continue to be carefully considered in the context of finalising the ultimate strategy.

The autism innovation strategy aims to address the challenges and barriers facing autistic people, understanding and accommodating autism within society and across the public system. The strategy contains actions that will be undertaken across government to better support autistic people and their families over an 18-month period. It complements and enhances wider action on disability by focusing on areas where there are bespoke needs for autistic people. In the context of the rising rates of autism globally, the autism innovation strategy is being positioned so as to identify and address those bespoke needs of the autistic community, laying the foundations for mainstream services that better understand and respond to the needs of autistic people alongside better public understanding of autism.

The strategy complements and enhances the national disability policy initiatives such as the recently published progressing disability services road map and the Action Plan for Disability Services 2024-2026. It comes in the course of simultaneous development of the next national disability strategy. It is clear that a great deal of work has been done.

To go back to the report, a number of key issues were identified by the committee, including delays in assessment of need, on which the Minister of State has worked tirelessly, poor access to assessments and services, the lack of inclusivity in education and the lack of employment supports. From June 2022 to May 2023, the Joint Committee on Autism had significant engagement with stakeholders regarding the provision of services to the autistic community.Over the course of 23 public meetings and 32 private meetings, the committee members learned a great deal about the challenges faced by the autistic community and those who support it. That is the value of this report. It reflects the views of the people who know the issues best. It is the result of the engagement with the stakeholders outlined in the report. We owe a great debt of gratitude to the people who came forward to the committee and told their really personal and honest stories about how they walk the path of being an autistic person in this country in 2024.

The recommendations in the committee's final report were informed, as I said, by its engagement with a broad range of witnesses. Several themes emerged that are relevant across a number of Departments. They include the urgent need for greater cross-departmental collaboration, joined-up service provision, clear pathways to direct access to services, accessible information, comprehensive consultation with the autistic community and well-resourced public services. More broadly, the report highlighted the need to change society's approach to autism and disability in general. We all have to learn, change, be willing to be wrong, be put outside our so-called normal box and to embrace a little bit of difference. We need to understand all types of disabilities.

I was struck by Fiacre Ryan, a young non-verbal autistic writer and student, who addressed a public meeting of the committee in December 2022. In his book, Speechless, Fiacre states:

It only seems appropriate to give the same rights given to those without autism to individuals with it. Needing some type of assistance does not make someone less of a person. Try to see past the autism and realise that we are the same inside as others.

The change that is needed goes beyond equality to equity and making sure we see people as themselves, with the value they have as they are, and give them some type of assistance. Just because people need help does not mean they are lesser. There is a culture within the Department of Social Protection in this regard that needs to be changed. There is a need for society to understand autistic people. There must be urgent action by the Government to address the stigma associated with autism and to improve the provision of services for autistic people.

Senator Joe O'Reilly spoke about the staffing issue. We need a drastic increase in the staff providing services to autistic people. The Minister of State has delivered the budget for that but the increase in staff numbers has not yet been delivered. I am interested in her views on that and her update on how she is moving forward to complete the CDNT teams. I know there is a lot of work going on behind the scenes.

One of the recommendations in the report that was implemented this week is the ratification of the optional protocol to the UNCRPD. This is a big win for all advocates, disability organisations and people who have pushed for it for a long time. I am very grateful for the work of the Minister of State in this regard. I am grateful to the Cabinet for passing the proposal on Tuesday this week. It is an important step forward.

Another recommendation in the report was for the establishment of a single entry point to children's disability services and to the child and adolescent mental health services for autistic children and disabled children to ensure they are no longer passed between services. There must be a continuity of service. We need liaison with third level institutions to develop work placement schemes to attract staff to disability services.

On education, I highlight the report's recommendation to provide funding and guidelines to ensure all new school premises are built in line with principles of universal design. There is a requirement for continuing professional development to ensure educational professionals, including teachers and SNAs, receive suitable autism training. The report recommends engagement with the HSE and the Department of Children, Equality, Disability, Integration and Youth to ensure children in special schools can access clinical supports in the school setting. The Minister of State is a strong and successful advocate for that. There is a recommendation for increased pay to incentivise participation by SNAs and teachers in the schools-based summer programme. The committee recommends adopting a rights-based approach to the summer programme to ensure it is regarded as an essential service for autistic children and their families.

There are many other recommendations in the report. One in which I am very interested relates to employment. The Minister of State will correct me if action is already being taken in this regard but I would like to see, as well as the important recommendations on employment, work being done on self-employment. People with disabilities should have a proper pathway to self-employment and more supports in that regard. In France and other countries, there is a dedicated pathway to self-employment for people with disabilities. Such a scheme would be a very flexible and positive way to work towards improving employment rates for people with disabilities. I congratulate the Minister of State on her achievements.

Mark Wall (Labour)
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I welcome the Minister of State. I also welcome to the House our friends and colleagues from AsIAm. I thank them for all their advocacy and help in preparing this report.

Previous speakers rightly thanked Senator Carrigy for his work as Cathaoirleach of the committee. I do the same. At various meetings we had, we learned of the opposition there was to his setting up the committee in the first place. He stood fast, with the help of many others, including the Minister of State, to ensure the committee was established. It is a great credit to him that it has issued its report with 109 recommendations. I thank the Senator again for his work. He comes to the issue from a personal point of view but he put that aside to help everybody. It was not just a personal crusade but a crusade on behalf of every child with autism in the country. He deserves great credit for what he did in setting up the committee. I was, and remain, proud to have been a member of it.

At our last meeting, the Minister of State spoke to us about enacting the autism strategy. She carried that out during the summer. It is a very important step forward. I thank the Government for ratifying the optional protocol to the UNCRPD. That is another important step forward. Yet another important step was the Oireachtas becoming an autism-friendly Parliament. Huge credit is due to Senator Carrigy and every Member of the House who took part in the training with which AsIAm assisted. It is important that we lead by example. By doing so, the Oireachtas leads the way for every other public building to become autism-friendly.

The summer programme, previously known as the July programme, has been mentioned by many colleagues. We all understand the importance of that programme to so many families. It is important because there is one word that comes back and rings in my ears every time I talk to people about these issues. That word is "routine", as mentioned by the Minister of State. When we talk to families, the talk is all about routine. It is about the two, three or four weeks, or whatever they are lucky enough to get, for which the routine is carried on for the children who need it most. It is those children and their families who avail of this provision the most. I cannot encourage everyone in the Government enough, and Members from every party, to ensure that whatever manifesto they are considering, the summer programme will be included it and will include provision for every child. Every school should be assisted and cajoled - I could use stronger words - to participate. We need to see a summer programme in every school to facilitate these children's routines. That is vital to families throughout the State. We did a lot of work on this in the committee, including issued an interim report, under the chairmanship of Senator Carrigy. That work has led to more schools taking up the baton. However, as the Senator would say, there are still too many schools not taking up that baton.

I have spoken to the Minister of State previously about the provision of school places. I recently visited a number of schools in the Newbridge area. I have dealt with families who had to ring 30-plus schools looking for a place for their loved one. I was informed of one family who had to contact 47 different schools seeking a place. That is not acceptable in this day and age. The average number of schools to which parents must apply is now down to approximately 35 in that particular area. I have mentioned previously the great job special educational needs organisers, SENOs, do. Can they do more to assist families in this regard? A central application process for school places is something we talked about at the committee. It has also been raised by AsIAm and, indeed, by the Minister of State. We must ensure families are assisted at their time of need and that, if a school place is available for their loved one, they are not left to spend hours and days on multiple phone calls to 47 different schools.The Minister of State and I have spoken previously in this room about assessments of need and at our previous meeting, she said that figure could grow to 20,000 by the end of the year. I recognise what she has done and her very good intentions in trying to reduce that figure, but it is totally unacceptable, as she has said previously. She has mentioned déjà vu in the past. We need to work on that figure and ensure the families who are crying out for assessments of need will be assisted as quickly as possible.

With that come the CDNTs and the services. In my local CHO, three families have been waiting on speech and language therapy for a year or more, which is unacceptable. All of us, including the Minister of State more than anyone, are aware of the benefits of early intervention and how important it is in the case of speech and language therapy, but it is not just speech and language. We also need to look at the other services and invest in them. The Minister of State has put a great deal of effort into this but we need to make sure the Government, and whoever comes next, will continue the work she has done because it is not acceptable that so many families are crying out for services for their loved ones.

A number of Senators have talked about employment places, an issue AsIAm has raised with us a number of times at our committee. That autistic people, as the statistics show, have some of the worst employment records is simply not good enough. We need to do more and create an environment where employers will take on autistic persons. One of the wishes of our report was that, by highlighting this, employers would see the benefits of hiring someone, of which there are many, and we all need to say that again and again. I know it is a point the Minister of State and the committee Chair, Senator Carrigy, have made a number of times.

As Mr. Harris will know, I am a big believer in autism-friendly towns, and AsIAm is leading on that. I forget the exact figure, but I think there are currently 30 or more. They are intended to create an atmosphere whereby it is okay to bring a child or an adult downtown and it is okay for them to be themselves in their hometown, with everybody knowing there is a friendly atmosphere there. It is so important to families that this friendly atmosphere is there whereby people can go about their own way of life and allow autistic families to go about theirs without the staring and looking that has happened so often with autistic families who have talked to me. That cannot continue, and I congratulate AsIAm on the work it has done on autism-friendly towns. Long may it continue, and I hope other towns will join in.

Senator Carrigy spoke about Dr. Ruddy and the €28,000 cost per year. That was a startling figure for all of us when he heard it at the committee. I know that the Government has looked at it but - I am probably speaking again with an election hat here - every political party needs to look at it because it is an unacceptable figure for any family.

The one-stop shops are a great idea and I know from our meeting the other day that some have started up, while others are in the pipeline. I encourage the Minister of State and the Government to ensure those one-stop shops will be rolled out as quickly as possible, which was an immediate ask from the committee. When we deal with families, there are so many asks, and if they can pick up the phone or call into such a premises, they will get the assistance they need.

On the housing adaptation grants, unfortunately, I am running out of time. It is welcome that there was a proposal to increase them to €40,000, but that is not enough. It should be nearer to €60,000 because that would reflect what families tell me they need when they are trying to adapt their house. Nevertheless, €40,000 is a step forward.

I invited in a special needs action group, SNAG, from my hometown, Athy, and it was one of the many groups we met on the day. It is a great group that does tremendous work with 20 or 30 families every Wednesday night in the local college, where people gather, talk about their difficulties and help one another. Those groups need to be supported, get finance and get the support of the Government because they do a tremendous job. I know that AsIAm will agree with me but I want to highlight those groups, which have been set up in every town in Ireland. They just need to be supported.

Paul Gavan (Sinn Fein)
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I welcome the Minister of State and our colleagues from AsIAm. I acknowledge the tremendous work of all members of the committee and especially Senator Carrigy, who has done a brilliant job on the report, its recommendations and building that all-party consensus, which is really important. Ultimately, we get the most effective change when we build the biggest, broadest possible coalition for change.

I was following the debate from my office until recently and was struck by a number of Senators' contributions, to which I will refer over my contribution. I was particularly struck by Senator Clonan's point that we are 30 years behind the rest of Europe in regard to these services. It had not occurred to me that most of us will be disabled at some point in our lives. That is a sobering point, and when we think about it, it is, unfortunately, true. We really need to take that on board, not least politically.

I acknowledge the work of the Minister of State in this area. As others have said, I have no doubt about her commitment to making changes. Having said that, the situation is just not good and has not been for many years. In fairness, that has been pointed out from people from across the Chamber. In August, the Minister of State published her autism innovation strategy, an important step. It was recommended by the report and must be welcomed but, from our perspective, Sinn Féin would argue the strategy does not really address the urgent needs of families. A number of Senators have pointed out some of these issues. More than 10,000 children are waiting for an assessment of need and 110,000 are awaiting essential therapies. Those figures are entirely unacceptable and clearly show that much more needs to be done.

Other Senators referred to the issues of children without a school place. I understand there were more than 120 such children at the beginning of September, while many more are forced to do a third year in the early childhood care and education programme or in autism spectrum disorder preschools. Children with special needs often require tailored support and inclusive environments to thrive academically, socially and emotionally. The longer they are left without a school place, the further they will fall behind their peers, not only academically but also in their overall development. The absence of suitable school placements when children need them creates long-term consequences for their development. We cannot allow this crisis to escalate further. It is unfair on families and our children. Of course, this is not a new phenomenon. It has been happening for years, yet the Government has consistently failed families by failing to act. As a number of Deputies noted during the recent Dáil discussions on this topic, advance planning is the key to this. We know before children enter national school that they are in the pipeline and that there will need to be school places for them, yet, consistently, unfortunately, that advance planning is not happening. Therefore, getting school places becomes a huge ordeal for parents and their children.

On the issue of key staffing, Senator Joe O'Reilly made some very valid points. The statistics are frightening. Children's disability network teams have an average vacancy rate for therapists of more than 30% nationally. This rises to 40% for occupational therapists and 70% for dieticians and play therapists, while Chamber House in Dublin 24 and St. Columba’s in Crumlin, Dublin, have vacancy rates of 50% and 60%, respectively. By any standards, that tells us all these services are in crisis. It is absolutely shocking and points to fundamental issues with how these people are employed and with their terms and conditions because there is clearly an issue with staff turnover, in particular. That, too, needs to be tackled. It is not simple to do so but without it, we will constantly lurch from crisis to crisis. Indeed, perhaps the most startling statistic, when I was researching this topic, was that there is currently a six-year waiting list for the CDNT in Dublin. That is 72 months. That is failure at a level that is catastrophic for the children and, indeed, the parents involved. There is an awful lot more to be done.

I was going to make a number of points contrasting Sinn Féin's proposed budget with the Government's budget. I do not really want to get into that, because I do not want to be overly party political on this issue and I want to acknowledge the work everyone is doing on this, but the Government continues to announce overall figures that appear reasonable but lack detailed breakdowns.Specifically, there is no clarity on how much funding is allocated to existing levels of service versus new measures or how much is designated for capital projects versus current funding. The Government's budget provided one-off measures, as if that would make a difference. Disability is not a one-off and it cannot be tackled with one-off payments alone.

Overall, it has been a really worthwhile debate and I pay tribute to Senator Carrigy and all the members of the committee who did such excellent work.

Eileen Flynn (Independent)
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I will start by thanking the Chair of the committee, Senator Micheál Carrigy, for all his hard work and dedication, for making sure that members of the committee understood what was happening and for going above and beyond with the 109 recommendations. I remember being so nervous going into my first committee meeting on autism and issues that impact people who are autistic because we usually say people with autism and people who are autistic are not the issue, society is the issue. Receiving the training we got as a committee really opened my eyes because I know and totally understand that sometimes people are afraid to speak to Travellers because they do not know how to approach. We all think it is that human level but our language is critically important and every single member of the autism committee got that great training from AsIAm. It is something that will stand to us even when we leave these Houses, so I thank the committee for that.

There was cross-party support and it was not a very political committee. It was focused on autistic people, which is really important. One recommendation from the report that really stands out to me is the review of CAMHS relating to access for children who are autistic. To think that in the Ireland of 2023 and 2024, a service can be blatantly discriminatory towards people with disabilities and towards autistic children is shocking. In one of the Committee on Disability Matters meetings, I asked whether it was discrimination and this is why I can stand up here confidently and say yes it was. When I asked the chairperson of the Mental Health Commission, John Hillery, was it discrimination he said that it was. It is so wrong to see discrimination in CAMHS. We all know the scandal with CAMHS over the last two years and how CAMHS needs to be reviewed, but it definitely needs to be reviewed for children with additional needs and for autistic children, of course.

One matter I brought to the autism committee I thought was very simple was around play and ensuring children have equal access to playgrounds to be able to play with their brothers and sisters. This would mean their fathers and mothers do not have to go to the next village to bring their children to a play area where they can play like they have to in Ardara, County Donegal. I welcome the capital grant this year that resources the scheme for playgrounds that are more inclusive. That came from the committee and it is absolutely fantastic. I understand some of the funding is for projects like the one in Longford that we spoke about in the committee to carry out research on some of the playgrounds. People who are autistic need to be accommodated. The Minister of State should be aware that the disability matters committee and the autism committee are something I am very passionate about but not it is just me. Every Senator that is here this evening is really passionate about equal rights for people who are autistic.

I want to compliment the community of Ardara, who have campaigned for and funded a sensory room in a very rural community. It is a sensory room on a football pitch. Parents came together for it and the national school in the area also can use the sensory room. As a result of the recommendations of this committee, it really brought it to the fore. It is more of a social issue but it is so important that we understand politics have an impact and that is something the committee highlighted. There were 109 recommendations. The committee would be an absolute failure if these recommendations were not implemented. I know that in February 2022, the Minister of State presented these 101 recommendations to the Dáil. It is not about us talking about issues that impact on autistic people, it is really about the answers. AsIAm came into us, parents of children who are autistic and adults who are autistic appeared before our committee and gave us the answers we put in this report.

It is up to the Department to implement those recommendations because I remember visiting a Minister with a Traveller organisation one time and we talked about the recommendations from the Traveller committee. No word of a lie, the Minister said that is just a committee and we do not heed half of the recommendations from a committee. That went right to my heart and I thought what is the point of us doing committee work and not having it implemented. The committee gives us power and the recommendations from the committee are important. It is not about kicking the can down the road; it is about us really listening to people and it is about the Department implementing the recommendations. We can sit from here until Christmas and way after an election and be back here and keep talking about issues that impact people who are autistic, but it is about the little wins we can achieve at local level, like sensory spaces in schools and playgrounds.

The report that came out a few months ago from the Ombudsman for Children on denying children with special additional needs access to education is absolutely appalling. We are still living in a country where children with additional needs and autistic children are denied access to education. That has to stop. We can all be in agreement on that. It is also one of the recommendations from the committee as well; equal access to education and good supports in education. We need to put our money where our mouth is and we really need implementation. If not, the committee was a waste of everybody's time. I know the Minister of State is very passionate around disability rights and the rights of people who are autistic but it is really about implementation. There is no better person to make sure our recommendations are implemented than the Minister of State, without putting pressure on her or without being sweet, I know her heart is in the right place. I thank the Chair again for all his hard work and dedication and I thank the Minister of State. I especially thank the witnesses and the families who came in and educated us as politicians and activists.

Mary Seery Kearney (Fine Gael)
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I will begin my contribution by paying particular tribute to two people in the room. I first pay tribute to the Minister of State for her extraordinary courage since the first day she was appointed a Minister of State in this area. I have always believed she should be a full Cabinet Minister and disability should be a full Cabinet Ministry but she has demonstrated that no matter what it was, she was going to confront it and ensure services have been delivered. I know she was instrumental in ensuring this committee was delivered. I want to pay enormous tribute to my colleague, Senator Micheál Carrigy. He has shown great courage from the very beginning to say this committee is needed, we need to talk about the issues and we need to formulate it.At each point he has chastised us, as a parliamentary party, encouraged us and talked. A week does not go by when he does not speak about the report from the committee.

I also pay great tribute to AsIAm for its extraordinary advocacy and patience with us in recent years, when I know at times it must seem that the pace of things are frighteningly slow. The recommendations of this report are fantastic. I am delighted that so much is already under way. I am particularly pleased with the optional protocol memo that went to Cabinet this week. I thank the Minister of State for all her extraordinary work on that. I know we have called for it to be ratified for a couple of years now and it would appear that the time is right. It is important that people with disabilities have the right to complain to the courts about the failure of the Government and the State to discharge a duty of care and to vindicate their rights. It is important we do that.

I pay tribute to the Dublin 12 autism advocacy group and the fabulous mammies there who advocate amazingly. They came in and spoke to the children's committee and the disability matters committee. I also want to pay tribute to Involve Autism and its extraordinary work. Again, it has been my privilege to work with it in recent years.

I know there have been calls from Government and even from the Taoiseach of late that we need to review the Disability Act. It is not enough to guarantee an assessment; we need to guarantee the services. On that, I thank Senator Clonan for his generous remarks. I know he has been mad with anger at times and giving out, and rightly so. Many of us have sat nodding to many of the things he has said, although we might disagree sometimes on philosophy, approach and the ability to deliver. I thank him for his considered remarks today. We all want to get to the same place of equality. Equality means that we give disproportionate advantage to those who need it, and that is right. I am a short little person. I might be in high heels today, but I am only 5 ft 2 in. If I need to see over a 6 ft wall, I need a stepladder. We need to be the people who create the stepladders and make them a normal part of our society in order for everybody to have an equal opportunity, be that in education, delivery of services, the construction of our streetscape and public realm, housing, access to work and the attitudes at work. Huge work happens to make that so.

When I heard Senator Clonan remark on culture, I know that the political culture, the political will and the money are there is to deliver. I know extraordinary people deliver on the front line, whether they are nurses, carers, SNAs, speech and language therapists, occupational therapists or public health nurses. There are extraordinary people are out there delivering on the front line in situations where staffing is challenged. They are doing so under extreme pressure.

I note, in the context of this debate, that I am not sure that cultural change is happening everywhere. I recently asked a colleague to submit a parliamentary question to the Courts Service to know how many defamation proceedings have been issued against members of families where there is an individual with disabilities, where they have complained about the services and the care by the staff and where defamation proceedings were issued against them. I know many families who are frightened to speak out, or who have spoken out in the past but found themselves in receipt of solicitors' letters issued at the behest of people in the HSE. I have also sought to know how many families in the wards of court process who have expressed concerns and who have received an injunction against speaking. I have asked for the details on that. The Courts Service has come back to my colleague with reassurances that a response will be forthcoming.

Over the course of four years, I have raised issues in this House. The disability matters committee used to meet on a Thursday morning after which I would come into the House for the Order of Business and say what I heard that morning was terrible and talk about the case of a family which had been in. I have raised a huge number of cases. I have had the experience of a manager in the HSE writing to me and expecting me to correct their version of the story on the record of this House. They had the audacity to challenge the democratic process and my right to stand up here and speak on behalf of families.

Tom Clonan (Independent)
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Hear, hear.

Mary Seery Kearney (Fine Gael)
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I have had that experience, which I robustly responded to in defence of our democratic right. I am concerned, however, that an organisation which has the job of delivering services is more intent on its personal reputation than on the actual delivery service. I am shocked at the audacity. I spoke with Senator Clonan today to say we need to have a meeting with Bernard Gloster and ask what the story is in the HSE that this is remotely acceptable. Families are cowed into silence. How dare the HSE treat them as such? I am wearing big girl pants. I am okay, I can stand up for myself and I have colleagues who will say, "Oh my God". However, I am not an individual parent or perhaps a lone parent who is receiving a summons to the High Court in their home following years of duress trying to care for and champion the needs of their child. Then they get a letter from the HSE summoning them to court. I do not think so. If any member of the HSE thinks I would tolerate that, they have another thing coming. If they thought it would silence me or intimidate me into silence, they have another thing coming, because I will not tolerate it. I am sorry for hijacking the autism report, but it needs to be said that there is a sinister culture in the HSE that has to be named and tackled.

Mark Wall (Labour)
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Hear, hear.

Tom Clonan (Independent)
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Well said.

Victor Boyhan (Independent)
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First, I welcome the Minister of State. I particularly welcome AsIAm and a great colleague and long-standing friend of mine, Adam Harris. It is great to see him here. I will take this opportunity without embarrassing him, because I do not think anything embarrasses him, to acknowledge his enormous journey. I have known him since he was only so high and have observed him. His lived experience and what he has brought to autism is simply amazing. I do not doubt the Taoiseach's commitment given he has Adam Harris at his side, prompting and reminding him. Well done to the Taoiseach and Adam Harris, particularly Adam, for his personal journey. It is not easy to stand up and talk about one's personal journey and use it in such a positive way as such an advocate and Adam Harris has done that amazingly well. I congratulate him and the whole team in AsIAm because they are an amazing example of what can be done, not only with personal experience, but with tenacity and commitment that drives every being in every day of his work as an advocate.

I also take this opportunity to thank the Minister of State for being here and listening. I particularly thank the Chairman of the committee, Senator Micheál Carrigy, who also has his own personal story. When an advocate has lived the life experience, walked and shared the journey, it brings added dimension to a campaign. The Senator has always used that very effectively, fairly and included everyone in the Parliament. I also acknowledge of the Oireachtas Work Learning, OWL, programme. Every day it is such a privilege to meet people who are involved in the OWL programme. They have added a special dimension to the parliamentary life of this place. That is something where we see the potential of mentorship, encouragement and support, but more importantly, the dignity of work and place and to be respected. That unique authenticity is so critically important to all our lives, which they have in buckets and spades.

Those are the nice words. The politician in me says let us keep the focus on this report.We have been asked to “note”, which is very disappointing and a very lacklustre word, this report. I do not like to see the word “note" in anything. Let us put a bit of context and realism into what we are talking about today.

This report was completed in June 2023, which is more than a year and a half ago. That is not to take from the amazing work of the committee and I acknowledge that and have done so. What has been very helpful for the committee in respect of the 109 recommendations is that they are broken down into a number of subgroups so we have the whole-of-government approach, and I like that. That is where it is all at. The Minister of State has consistently said that. One of her mantras is that it is a whole-of-government, holistic approach. There is no point in coming up to her and banging, shouting and screaming and then it is to do with the Minister of Finance. The recommendations are all multifaceted. The Minister of State has been very strong that it is a whole-of-government approach and I acknowledge that. When some people were not quite comfortable with it, she kept driving that message home so well done.

Where the whole-of-government approach breaks down in this report is when it comes to disability services, which has a subsection on health, education, employment, housing, planning and the built environment that are all so critical to this debate. Then there is a subsection on higher and further education, which is very important. We never stop learning, even in here. We need to keep learning and the day we think we are not learning, or are not prepared to or open to learning, we should pack our bags. Social protection is also a subsection and that is really important.

Those subsections are all equally important. We must not be overwhelmed by the ambition of this report, because it is ambitious. We must be realistic. This report cannot happen unless there are resources, be they staff or finances. That is critically important. There needs to be timelines. I know from my work on the agriculture committee that we have dashboards for agricultural performance and the delivery of the national forestry plan. The Department publishes the results online every week and they are published by the committee. I suggest the committee needs to look at this. I do not know if it has had much discussion about it. We need to have a track on this and see delivery, not hearsay. This Government is coming to its end. That is the reality of it. At least this report is sitting on the table for a new Minister. It is important we do not delay this anymore. We need to be in here as Senators and people in the Dáil as TDs need to be demanding the Minister of the day clearly sets out what is happening with no more excuses, no more tears and no more disappointments. We want action. We want real, tangible, measurable action that will deliver on these 109 recommendations because they must become alive and not be words on a page. There should be no more niceties and no more patronising. I am not suggesting that of anyone here by the way but I am tired of people patronising people who have special needs. We all have needs; that is a fact. I think that is important.

Let us not lose sight of the fact this report is more than a year old. It has 109 key recommendations. We need someone who can ultimately be held accountable politically and who will deliver on each and every one of these. That has to be measured because the report is only a bit of paper if it is not a plan that is shared and that people take responsibility for.

There will be a new, incoming Minister. The Minister of State has a few more weeks or maybe two or three more months and I know she will not give up. The reality is this report does not belong to any one individual. This report requires a whole-of-government response. Maybe I am a foolish person to do so but I predict there will be a similar type of government in a matter of weeks so the transition should be pretty smooth. We will not be talking for months and months about forming a government and what will be our priorities. The reality is, it is a continuity. It will be a transition to a new administration within weeks, if not months, so all of is sitting on the table and all of this is ready to go and be implemented.

Well done to all of the people involved - fair play to them – but in particular to Senator Micheál Carrigy for driving and pushing this every day and having such enthusiasm. This report is a credit to him and the team he led on this committee. Well done to all involved. I do not doubt the Minister of State’s commitment but time does not stand still for any of us and at least the work is done. It is ready. It is sitting on the desk. Let us put in place a clear reporting system that will see the delivery of these 109 recommendations.

Seán Kyne (Fine Gael)
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The Minister of State is welcome. I join others in acknowledging the work of Senator Carrigy and all the members of the special committee for its publication of the interim report, initially, into the summer programme, and the final report. I also welcome Adam Harris from AsIAm and thank him for his work and I acknowledge the work of the Houses of the Oireachtas and all of us who participated in achievement of making these Houses autism-friendly and receiving the accreditation.

I will pick up from where the previous speaker left off. That is the crux of the issue. We have a report and recommendations. It is not on the Minister of State’s shoulders alone to ensure its enactment. It is important that while none of these recommendations have timelines or a funding commitment, they are followed up. It is crucial that in the next programme for government, whenever that is, there is a commitment to enact, follow up, monitor and whatever word one could use, the recommendations published in the report. Obviously, some of those recommendations come with a financial cost and there has to be necessary buy-in to that. Some of the recommendations relate to time and a change in strategy, and the actual publication of strategies within every Department is one of the recommendations. That is fine but will that be renewed or reviewed? Are there timelines for them? It is important that these recommendations are followed up in the programme for government after the forthcoming election.

The report recommendations are broken down very well in terms of each Department. The first thing each Department does after each programme for government is published and agreed is to go through it and pick put the pieces that Department has to follow through on. It is up to the Minister in that Department to drive those issues. I ask that this be done.

Some of the recommendations are perhaps more complex while others are simpler. Some of them can be quick fixes and others have been achieved. Does the Minister of State have any indication of progress on some of those recommendations? The optional protocol has been touched upon as being a milestone decision. I know there was concern previously about the summer programme but maybe these things have changed. The interim report found that payment of teachers for the summer programme was not taking place until December. Has that changed, for example? Has that been done? Has it been enacted? Certainly, the summer programme has been regarded as being hugely successful and important. It is important in terms of, as well as being good for the children involved, taking a burden and pressure off of families, parents and siblings during the summer period. Everybody needs a break and for those who suffer or have challenges with autism, depending on the range, it is important they get the best education and that is what is provided through the summer programme.

A lot of work has been put into the recommendations. The most important thing now is that they be enacted. The best avenue for that is via the programme for government and the next government’s continued involvement in this programme. The hard work has been done in terms of the series of meetings with all stakeholders and groups, the work done by the secretariat and all the hours that went into this. A report has been published. Let us see that report fully implemented as quickly as possible and continuously monitored, followed up and followed through.

Tim Lombard (Fine Gael)
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I acknowledge the efforts of the committee. It did a fantastic job of putting the report with 109 recommendations together. I acknowledge the Chair who did a really good job. He really tied in the key points that needed to be made. Senator Micheál Carrigy had been a really good advocate for people who need help and it is great he used his personal experience to make sure this report went through the Houses of the Oireachtas. This debate is very welcome because we are going through a potential change that will happen during the next few months.We do not know who it will be or what is going to happen. Whenever the new Government is formed, we need to make sure the 109 recommendations form a major part of the programme for Government. That is why this debate is so important. Hopefully, we are future-proofing the report so the next Administration, whoever they may be, will take into consideration the good work that has been put together.

The 109 recommendations are very important for the people who have worked hard in their communities to make sure there is hope at the end of this. That is the key: we now have hope. We have a roadmap and a master plan, and we need to work to make sure they are implemented. We need only look at the changes in society in recent years. For example, there is the course that we all did here in the Oireachtas. In my area, Clonakilty is now an autism-friendly town. If you go into Scally’s supermarket on a given night, it is autism-friendly and a place where people can go shopping in a different atmosphere. The world is moving fast in this space and it is important that, as a Legislature and a democracy, we move with it. The people are potentially ahead of us at this stage. We need to move into a space where we make sure everything is inclusive. That is what this report has done. It has brought forward key recommendations to ensure we can move forward in that space.

The timing of this debate is very important. There will be political changes in time and we need to make sure they are incorporated into whatever regime or Administration is put in place.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Seanad for allowing us to have this debate. It is not really a debate but an acknowledgement of the hard work that the Joint Committee on Autism has done on the report that was produced over 12 months ago. I thank its Chairman, Senator Carrigy, for making sure there were no barriers to this committee being an all-party, cross-party committee, where children, young adults and not-so-young adults were put at the centre. The report that it produced, with its 109 recommendations, has been the basis of the autism innovation strategy. While it was in progress beforehand, the work of the committee ensured its completion.

I know the committee helped because I could not get it all done on my own. It was working in a parallel process, reviewing matters with the committee members and engaging with the various stakeholders, which was feeding back while the Department was continuously working away at the same time. Although Department officials would sometimes like to think we do not talk to each other or do not get along, we do. We sometimes park politics outside the door and we do what is right for individuals. In this instance, we all rowed in the one direction, with the one agenda, which was to put the person at the centre, see what was required and listen to the voices of the stakeholders. I thank Senator Carrigy and everybody who contributed, from his colleagues who contributed at the committee to the various groups and individuals who came before the committee to share their experience, whether it was in housing, education, employment, PA support, health support or transport. The committee heard them all and they laid out the basis for the 109 recommendations.

As Senators are aware, the Government approaches action on disability, including action on autism, on a mainstream-first basis. Individual Departments and agencies are responsible for supporting persons with disabilities within their remit, and my Department acts as a central co-ordination point to support this. The autistic community was involved in all stages of the development process of the autism innovation strategy to ensure that it responded to, and reflected, the lived experience of autistic people and those around them. This is something I was determined to do from the outset. We held an initial public consultation in 2023 and then published a draft strategy in early February this year to enable further public consultation and seek the views of the autistic community, their families and supporters. We received a very positive response to the consultation process, with over 300 contributions being sent to my Department. In addition, to ensure that all voices were heard, we held a dedicated consultation process, which targeted autistic children and non-verbal and minimally speaking autistic people. On the basis of the feedback from both sets of public consultations, my officials engaged with over 15 Departments and agencies to reach an agreement on actions.

Within this mainstream-first approach, the Government also recognises that autistic people and their families face particular challenges which need to be better addressed. It is for this reason that we made a clear and sincere pledge to action on autism in the programme for Government and is why I prioritised the development of a new national strategy on autism in response to this commitment. I was delighted to launch the autism innovation strategy on 26 August alongside the Taoiseach, Deputy Harris, and the Minister, Deputy O’Gorman. Although the autism innovation strategy was in development prior to the report being published, we carefully considered the committee’s recommendations when finalising the 83 actions contained in the strategy.

The aim of the autism innovation strategy is to provide a framework for real cross-government action on autism. It identifies areas where there are bespoke challenges and barriers facing autistic people and their families and it aims to address them. As I said, it sets out 83 clear actions to be delivered within an 18-month period. We are all conscious that within that 18-month period, we might but not be here in the Houses, so we need a framework and a structure to ensure that work will continue until the 34th Dáil commences. As part of the process, Departments and agencies were asked to consider the recommendations of the Joint Committee on Autism insofar as the recommendations pertained to their areas of responsibility.

The final strategy reflects many of the committee’s recommendations. I will bring the House through its four pillars. Pillar 1 lays out plans for an autism acceptance and understanding campaign to improve understanding of autism across society and for autism training in the public sector. We led by example in the Houses of the Oireachtas, which was down to Senator Carrigy’s leadership. Pillar 2 contains a large suite of actions focused on ensuring equality of access to public services and aims to deliver improvements in key areas, such as health and social care, all levels of education and training and employment, among other areas where autistic people face unique barriers at present. Pillar 3 stresses the need for accessible and inclusive communities. Pillar 4 is aimed at building capacity through data, research, advocacy and access to assistive technology.

In this way, the autism innovation strategy aims to provide for a more holistic, co-ordinated and innovative approach to addressing the gaps in services and supports currently facing autistic people and their families. It is important to note that while I had a team of Department officials to help me with this, I also had access to lived experience. The autism innovation strategy is a co-designed piece of work and, at all times, I wanted the people with lived experience advocating for it. They were part of the overall steering group, thereby ensuring that we got the language right, heard the voices and reflected the views of everybody in the autistic community. Part of the strategy’s purpose is to lay the foundations for better accommodation of the needs of autistic people in mainstream service delivery. It will deliver tangible results in the short to medium term and provide the building blocks for a more autism-friendly society in the longer term.

It is important to emphasise that in addressing bespoke challenges and barriers for autistic people, we must not run the risk of creating a perceived hierarchy of disabilities. Many of the issues highlighted in the committee’s report, and voiced in the consultation process, affect not just autistic people but other persons with disabilities too, a point acknowledged by Senator Seery Kearney in her contribution. Where shared challenges arise, we must provide mainstream solutions that work for everyone. There is a balance to be struck. These shared challenges, some of which are reflected in the committee’s recommendations, are more effectively addressed via other policy frameworks that will deliver results for all persons with disabilities, including autistic people. In the context of my own portfolio, these frameworks include the next national disability strategy, the development of which is under way. The next national disability strategy will provide a blueprint for continued implementation of the UNCRPD in Ireland and further support the rights and inclusion of all disabled people, including autistic people.

I am pleased that the Cabinet yesterday approved Ireland’s accession to the optional protocol to the UNCRPD. I thank the Senators for their kind words on that. Yet again, it was not just me and there was a cross-government, cross-departmental approach. It took the Taoiseach, the Tánaiste and the Minister, Deputy O’Gorman, to ensure it got delivered to Cabinet, with the work of all Government Departments having to feed into this. As a programme for Government commitment, yesterday’s decision represents another step forward in Ireland’s journey to fully realising the rights enshrined in the UNCRPD.Signing up to the optional protocol demonstrates our intention to keep building on the progress we have made in ensuring that the rights are upheld and ultimately assist in furthering the State's progression and implementation of the convention in an important way.

I will address the Members who are here. I thank them for their time and contributions. I picked out certain words from different contributions. Senator Clonan used the word "emblematic". That is exactly the word to describe the Joint Committee on Autism and what is now happening with the autism innovation strategy. No group can do this alone. It has to be the work of a collective. There must be a clear collective of understanding. I am delighted that representatives of AsIAm are in the Gallery because they have been a part of the collective, along with the D12 Campaign 4 Autism Inclusion, Rainbow Club, Involve Autism and Neurodiversity Ireland, to name but a few. Departments and party members have also been involved, as have the many people with the lived experiences who gave of their time.

The committee delivered a report containing 109 recommendations. That was overlaid with the autism innovation strategy, which represents collective and joined-up thinking. One of the most frustrating things when I became a Minister of State was the disconnect between one Department and another and the silo effect. I would like to think that when I leave the office, perhaps some connectivity will have been established by our move from the Department of Health to the Department of disability. That has been a positive step. We pull a lot of strings within the Department by going back and forth with other Departments. I mean that in a positive sense. When you talk about equity of access, inclusion, participation and a rights-based approach, it is hard for many Departments to say you are wrong. Senator Clonan's use of the word "emblematic" summarises the situation.

Senator McGreehan spoke about Fiacre Ryan and speechlessness. Hers was a powerful contribution and it allows me to talk about augmentative and alternative communication, AAC, devices. When I became a Minister of State, I did not know what an AAC device was and did not know its value. It is important to acknowledge the lady from Longford, Ms Elaine Jenkins. She sent me receipts via a direct message on Twitter one night. She told me the cost of AAC devices and how to make a difference. Until then, everyone was talking about Pictionary and perceived efficacy and goal setting, PEGS, and all of that. I was then brought into the 21st century and saw that this was how we could do it. Between the Departments of Health and Education, 500 devices were purchased per year. Through the funding I have managed to secure and allocate - and AsIAm is leading in this regard - my Department will purchase 540 devices, which is more than the Departments of Health and Education put together, to ensure that children have the support to have their voices heard. The most important thing as an elective representative is the privilege of having your voice heard. It is important that children, both young and not so young, have their voices heard and are supported. It is one thing handing a device to people but there is more to supporting a young individual. That is what AsIAm and speech and language therapy can do. There is also a need to support the family to show them how to understand and use the device. We must also support the teacher to allow them to use it too. A circular approach is required and it is good that we have got there. That all comes from Fiacre and knowing that there are ways for voices to be heard. I will come back to the matter of a single entry point for CAMHS in a moment.

Senator Wall talked about autism-friendly houses. We had so many staff. It was not just us who did it. Our teams, up and down the country, were part of it. My staff in Athenry partook, as did my staff in the Oireachtas. Everybody got into that whole movement. There was a movement towards change and understanding. That is how we do it. The inclusion of summer provision is big, as far as I am concerned.

Senator Seery Kearney underlined the world "culture". All of us have had different conversations about it. We need to change the culture. I will be fair when I say that I think Mr. Bernard Gloster is a really good CEO. He has a good and clear understanding. However, he has a seismic shift to make when it comes to cultural change. I believe he is the right guy and is in a good position to make that change. An enormous sea change is required. Families feel that if they speak out, they will be punished. That is wrong, and certainly not what I would want any family to feel. I do not want them to feel that if they speak up, they will lose something they need to support their family.

I second the words used by Senators Boyhan and Carrigy about AsIAm's Adam Harris. He has been instrumental in the work he has done. The Oireachtas work learning, OWL, programme is brilliant. It is a pity we could not bring in representatives of our local governments to see how it operationalises. Naas General Hospital, which is in Senator Wall's area, does a fantastic job of inclusion with its opportunity to work programme. The OWL programme is really good.

Senator Kyne said there is no quick fix, and there absolutely is not. It has taken four years to get to the stage where, during this debate, we can say that we have some work done. I acknowledge the work of the Ministers, Deputies Donohoe, O'Gorman and Micheál Martin. I have no doubt that I have frustrated them beyond belief, particularly during this budgetary cycle. To them, I apologise. At the same time, money helps us get the job done. It is important to acknowledge that.

What has been done? We have two one-stop shops on the way. One is being looked at and another is on the way. Some 1 million AAC devices are in the base and being delivered upon. The autism innovation strategy is done. We had 65 special educational needs organisers, SENOs, and now have 120. They are there to support the parents and children. Parents should not have to run around to 47 different schools. That is the job of the SENOs, who should know where there is availability. SENOs should be able to communicate that and help the families. That is the work that is going on with education.

On mental health, the no wrong door policy has been achieved with the Minister of State, Deputy Butler. She has funding in her budget, and I am not stealing her budgetary lines, for two ADHD hubs to complete. There will be ADHD hubs in all six of the areas overseen by regional executive officers, REOs.

I will move to what is in train. Some people have been on waiting lists for a long time. In June, the Taoiseach secured €11 million to allow us to source private therapy. That gave me the chance to prove what the HSE and private therapy could do. Through June, July and August, 1,100 children were taken off the list of long waiters. That is equity. We started with those who had been waiting the longest. That is going on, on a monthly basis.

July provision has been replaced by the summer programme, with €40 million from the Department of Education. Senator Wall talked about groups right around the country. I have secured €2 million in the autism innovation fund as part of the programme for autism. Some €2 million has been set aside for groups. That funding can be accessed by the likes of Senator Wall's group in Athy and my pals in Loughrea. They will now be able to partake of that funding. Some €5.8 million was set aside within the Department of higher education for universal design. The aimed support is expanding to after-school services. Work is ongoing within the Department in respect of children who are younger than two years and eight months to allow them access to the early years services.

Workforce planning is ongoing on a regular basis. There is an in-school therapy pilot. We have all heard the conversation in the recent weeks. Six schools have been allocated and another ten schools will be chosen. I acknowledge the work of the REO in Cork, who has given St. Killian's Special School €40,000 to recruit its own private therapist and to ensure it can deliver services.

The HSE is commencing autism training for its staff. It is working with a particular provider to ensure there is proper autism training.

In playgrounds, communication boards designed by Finding Charlie's Voice are being rolled out as we speak. There are housing adaptation grants to ensure sensory rooms are included. We did not have sensory rooms three years ago and they are now on the local housing adaptation list.Finally, under the community rural development scheme, there are sensory spaces in the connected hubs so young people who might particularly want to work alone but want to work in their own community can participate in the hubs. The Minister, Deputy Humphreys, has been taking that on board. There is the shopping list. The work has started. That is what I am leaving to whoever comes after me. It has started; it needs to be built on and developed. We do not need legislation if every Department does its fair share. Legislation is required when Departments fail. Every Department I have leaned on has come to the table. It is important for whoever comes next to hold the toes of the Departments to the fire. The autism innovation strategy is 18 months but there is a catalyst in it at 15 months to say it can be extended, and extended it should be to ensure that every Department understands inclusion and equity of participation. We have a cancer strategy in this country that is very successful. There is nothing to say that the autism innovation strategy cannot stay in the same way. It needs to continue to be funded.

Garret Ahearn (Fine Gael)
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Before I call Senator Carrigy, I also acknowledge the incredible work done by the committee over recent months, led by the Minister of State in particular. Now is the time to act on those 109 recommendations. From a personal perspective, the Minister of State should be very proud of what has been achieved so far. Senator Carrigy has five minutes to conclude.

Micheál Carrigy (Fine Gael)
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I thank the Acting Chairperson for his kind words. Ultimately, this report is about giving every child the same chance in life and the opportunity to achieve their potential, whatever that may be. I have the report with me and one of the reasons I put the words of Fiacre Ryan in the foreword, which Senator McGreehan mentioned, is the quote sums up a lot:

It only seems appropriate to give the same rights given to those without autism to individuals with it. Needing some type of assistance does not make someone less of a person ... Try to see past the autism and realise that we are the same inside as others.

That can go for any disability. Those are powerful words and it was one of the most powerful days in this Oireachtas when young Fiacre and his family came in here. He was the first non-verbal person to give evidence at an Oireachtas committee. We also had the day in the Seanad when Government business was moved and we had self-advocates and family groups from around the country sitting in the seats of elected representatives, giving their views and their stories. It was one of the most powerful days of testimony given to any committee. Those of us who were there will never forget that day.

I thank all the Members for their contributions to the debate, and particularly for their comments to myself. This was a cross-party committee of Members of the Dáil and Seanad. I acknowledge Senators Walls, Flynn, Garvey and Ardagh, who were part of that committee. I also thank my colleagues from the Dáil who were on the committee. I particularly thank the Minister of State. Other Members have highlighted her immense contribution. She has not been afraid to take on the Department and the HSE and fight. She listed numerous advances that have been made and significant numbers of them are recommendations in the report that have been implemented. We will publish an update within the next couple of weeks, before any election, when we have finally got all Departments to reply to the letters I sent to them. We will have an update on where we are and our plan is to traffic-light where we are with implementation of the report. That will be a benchmark for those in the next government and Members of Dáil and Seanad Éireann. It is somewhere I intend to be to be able to hold Departments to account and review, in June 2025, the 24-month follow-up on the report.

I compliment the Minister of State on her work on the strategy. I know it was a fight to get a lot of things into it that would not have been there otherwise. The optional protocol is something the Minister of State has fought for as well. Yesterday was a great day when the Government passed ratifying the optional protocol.

Adam, Niamh and Michael are here from AsIAm. It is important to note the work they have done, which is going into its eleventh year, to put the issue on the national agenda. I thank them for their work. They have a lot of further work to do. Funding has been given to the helpline manned by AsIAm. We now have the AAC devices and this needs to be rolled out. Every child with a speech and language issue should have an AAC device provided by the State with the requisite app on it. I have seen what it can do for my son. It can do the same for every child and It needs to be rolled out. The reality is that we do not have the therapists. Despite the increased number of places at third level, it is going to be difficult and we need more and more. However, a lot of work can be done at home by parents with that technology in place. We need to roll it out.

Senator Wall and visited the Scottish health minister 12 months ago. We met the minister, people from the department of health, and Scottish Autism. The Minister of State was over there. We saw what benefit the community hubs are over there. We need to see their roll-out across all new RHAs or the old CHO areas, as were, and regionalise them across the country so that every child, parent and family has access to a community hub and community support.

A number of Senators mentioned the project in Leinster House. We have spoken about the OWL project. Every day when I come in and see the OWL trainees, it puts a smile on my face. It is brilliant to see that opportunity being given to them. The autism-friendly Parliament project we did here and the training and awareness project are a catalyst for the remaining Departments to do the same. It is important to put on record our thanks to the Ceann Comhairle, the entire parliamentary services, Roisin Deery and the EDI team, who led out and supported those projects. A number of Departments are following suit on the back of what we have done. Other agencies, even sporting agencies, have come on board. I believe that awareness project here will lead to societal change, societal understanding and awareness. By being aware, we can get those changes made. Ultimately that needs to change across all disabilities, not just in the autistic community.

I am grateful to the witnesses who contributed to our numerous meetings, and indeed to the autistic community for their support and for the passion and commitment they have given throughout the years in face of what are difficult challenges for them in their lives. It has been a privilege for me to work so closely with the community on the report and I am grateful for their continued co-operation, in spite of the sense of disappointment they might feel having been marginalised by the State and society. That is changing. The State and Government are changing. We have more to do. We have to make sure that society changes by informing more people and making them aware. That process has started. I would like to thank all those families, their supporters, and the autistic children and young adults for their patience and support in our efforts to make sure we promote inclusion across all of society.

I slightly differ from the Minister of State regarding legislation. It is something I am extremely strong on and all members of the committee were strong in their view on that. We have a strategy in place for 18 months but legislation will compel the Minister of the day, whoever that may be, and whatever government might be in power, to make sure they implement that strategy for whole of life, not for 18 months. By putting that in place we could rebuild the trust with those families that we will provide the services they need for whole of life, not just for 18 months.I will push with colleagues in my party to make sure that is part of our general election manifesto and that if we are going into government post election, that it would form a part of the programme for Government, that we would legislate for the strategy and build on the good work the Minister of State has done and make sure that those supports are there for whole of life.

Garret Ahearn (Fine Gael)
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When is it proposed to sit again?

Micheál Carrigy (Fine Gael)
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At 9.30 a.m. tomorrow.

Garret Ahearn (Fine Gael)
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Is that agreed? Agreed.