Micheál Carrigy (Fine Gael) | Oireachtas source

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.