On Wednesday 14th June 2023, the Joint Oireachtas Committee on Autism published its final report into its work, which was launched in the AV Room in Leinster House.
The Committee was set up in 2022 following a series of Dáil motions and Seanad debates calling for greater support for autistic people and calling on Government to address issues such as delays in Assessment of Need, and to provide greater access to school places for autistic people who experience barriers to accessing an appropriate education in their local area. It also follows a series of bills, including those introduced by Former Minister for Health, TD and Senator James Reilly, and more recently by Independent TD Sean Canney and by Aodhán Ó Riordán and the Labour Party, all aiming to legislate for a national Autism Strategy and for improved access to services which support autistic people and families.
The Committee, which ran for just over one year from April 2022 to June 2023, set out to investigate the barriers that autistic people and the wider community are facing when seeking access to services and supports in a wide range of areas, including education, employment, disability services, housing and the built environment, and health, among many others.
The Committee, which was chaired by Senator Micheál Carrigy of Fine Gael, included members from across political parties and working groups within both the Dáil and the Seanad, and worked on a cross-party basis with support from across all political parties and groups across the Oireachtas. The Committee held 23 public meetings over the past year, including a session in the Seanad in March where they just heard from autistic self-advocates and family members and their experiences living in Irish society.
They also heard the testimonies of autistic people, family members, academics, service providers, professionals and their representative bodies, officials representing the trade union movement, and policymakers such as Government ministers and senior civil servants, including officials working in Government departments and State agencies.
As Committee Cathaoirleach (Chairperson) Senator Micheál Carrigy noted in the Foreword of the Report:
“The Committee was privileged to hear directly from autistic self-advocates and the families of young autistic people. On behalf of Committee members, we were moved by the honesty of the autistic community and their families as they shared their personal stories. We heard of the barriers that are faced by autistic people as they try to access the services and supports to which they are entitled and which they deserve. We heard of the struggles of autistic people who are confronted by a society which has for too long failed to consider their needs and has not facilitated their full participation. While the Committee is extremely grateful to these advocates, we are also disappointed that they have been forced to share details of their private lives and the challenges they experience with the public. The Committee urges the Government to adopt this report and to implement its recommendations.”
The Report’s findings and recommendations have been informed by the experiences of witnesses who appeared before and who wrote to the Committee with their submissions – from these testimonies, some overarching themes emerged. The Committee stressed the need for more resources for our public services to address both barriers to accessing everyday services such as school places, assessment of needs and post-assessment supports, to address staffing issues identified within the public and community and voluntary sectors who work with autistic people and families. It also called for more support from the Government and State agencies to address negative public attitudes and barriers that autistic people, children and adults alike, face right across Irish society, including in areas such as access to employment, education, housing, and social protection.
The Committee was also struck by the compelling advocacy of autistic people and community members who were witnesses and who sent written submissions. They found that many within the autistic community felt consistently let down by the State over what many autistic people and families perceive to be the absence and inadequacy of supports. In hearing this testimony, the Committee found that many autistic people and families were justified in having reservations about the State’s capacity to ensure that public services would improve to address the shortfalls in supports for the community. They also found that to remedy this sense of malaise and the lack of trust felt among many autistic people and the wider community, the State needed to show the autistic community that any changes that were happening would deliver tangible and transformative results to help them to feel more confident about being supported and more included in all aspects of Irish society.
The Committee addressed the reasons behind these sentiments, stating that: “the autistic community told the Committee about the lack of understanding of autism and the inaccessibility of services, including those which are adequately resourced. It is essential that these services are designed with these neurotypes (Editor’s note: neurodevelopmental difference, disability or way of thinking) in mind and that services that directly impact the lives of autistic people are designed in collaboration with the community.”
Key issues highlighted by the Joint Oireachtas Committee on Autism
The Oireachtas Committee’s Report covered a wide and diverse range of issues which show the breadth, diversity and pervasiveness of barriers that autistic people and the wider community face, structured around six main themes.
These themes include:
- Disability Services
- Social Protection
- Employment, Autistic People, Health and Wellbeing
- Autistic People, Housing and Homelessness
Some of the key issues under these themes addressed by the Autism Committee in this Report include:
- the access and provision of disability services and adult supports to support members of the autistic community both from a service provision and administrative perspective.
- issues around supporting autistic adults seeking a diagnosis, and around access to post-diagnostic or peer support groups.
- barriers to accessing education, ranging to accessing school places to individual supports
- reforming our education system to meet our obligations to make our schools more inclusive for all autistic students
- planning for longer term transitions towards a more inclusive education system
- managing transitions from school to further and higher education, apprenticeships or employment.
- access to Augmentative and Alternative Communication and different modes of communication which support autistic people.
- barriers to accessing social protection for both autistic people and families, including meeting the additional costs of living as an autistic or disabled person.
- whether existing social protection payments are enough to meet people’s needs, both autistic people and their families.
- poverty traps which can arise around accessing social protection,
- issues with accessing grants and supports from the State.
- Barriers that autistic people experience to accessing employment in the open labour market.
- Government incentives for employers for recruiting and keeping autistic people in their company or organisation.
- Supporting autistic people in the workplace, such as disclosing their difference or disability, accessing reasonable accommodations and investigating potential models for in-person supports.
- Support around developing self-advocacy, life skills, and navigating the workplace.
- Fostering inclusive workplace cultures and addressing negative perceptions and stereotypes which impact autistic people in the workplace.
- Promoting opportunities for self-employment and entrepreneurship.
- Including autistic people as part of public sector recruitment targets for disabled people.
- Promoting work, work experience, recruitment and retention and return-to-work programmes for autistic people.
Autistic People, Health and Wellbeing
- How autistic people have worse physical and mental health outcomes compared to neurotypical or non-autistic people.
- Co-occurring differences or disabilities that some autistic people experience.
- Barriers to accessing healthcare for autistic people.
- Barriers around referrals and being accepted to Child and Adolescent Mental Health Services that autistic children experience.
- Barriers to accessing mental health supports for autistic adults.
- Ensuring staff are trained around autism and have the cultural competence to support autistic people seeking access to health services.
Autistic People, Housing and Homelessness
- How autistic people face barriers to accessing housing.
- Barriers autistic people and families face in accessing housing support.
- How autistic people can have a greater risk of experiencing homelessness.
- Issues autistic adults experience in accessing social and affordable housing and navigating the systems local authorities have in place.
- Ensuring that housing is accessible to autistic people and built to Universal Design principles.
- Ensuring that the Built Environment and Public Spaces, including public buildings, are accessible to autistic people and the wider community.
Here are some of the measures that the Joint Oireachtas Committee on Autism recommended that the Government should take to support autistic people to have the same chance to participate and be accepted and included – the full list of recommendations is included in the Report, a link to which you can find below on the bottom of this page or on the Oireachtas website:
- 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 require the Minister with responsibility for disability to address both the Dáil and the Seanad every year to provide an update regarding its progress.
- Run a national acceptance campaign which supports autistic people to participate and be included in all aspects of social and cultural life, including specific campaigns supporting autistic people in areas such as education, healthcare and employment.
- Ensure that the needs of autistic people are considered with designing all public services and include the autistic community when designing autism-specific services.
- Ratify the Optional Protocol of the United Nations on the Rights of Persons with Disabilities.
- Set up a ‘One Stop Shop’ programme where autistic people or people who self-identify as autistic can access information and to support them to access any services or supports they need.
- Recognise the work of autism groups who support autistic people and families by setting up a funding stream to support these groups in their work and for more autism groups and autistic led groups to be set up to support autistic people across communities in Ireland.
- Develop and enforce guidelines to ensure that interventions provided to autistic people and disabled people are evidence based and rights based.
- Introduce a Cost of Disability payment which is not means tested for autistic people and disabled people who have higher costs of living because of their difference or disability.
- Benchmark the rate of Disability Allowance and other social protection payments to ensure that autistic people and families who rely on income support from the State have an adequate standard of living.
- Increase the income disregard for the Disability Allowance and Carers Allowance to consider the costs of living with a disability.
- Initiate a review of the application processes and their transparency to minimise the rejection of applications for disability supports and care supports.
- Develop a long-term plan for the State to provide a high-quality public employment service directly to autistic people and disabled people to ensure that employment services are equally available to all disabled people.
- Work with the Department of Health to amend the Disability Act 2005 in tandem with the Education for Persons with Special Educational Needs (EPSEN) Act 2004 and include a right to services as well as a right to Assessment of Need.
- Liaise with the Department of Health to increase the number of places in third-level courses in occupational therapy, speech and language therapy, physiotherapy, psychology, social work and nursing and work to match these numbers with clinical placements.
- Establish a State-run public employment service that builds on the good practice in the field of disability employment and which links autistic people to employers and offers support, guidance and information as well as tailored support services for participating employers.
- Amalgamate and streamline workplace support grants and the Reasonable Accommodation Fund under one fund which employers may draw down for the purposes of accommodating an autistic or disabled employee or prospective employee.
- Introduce mandatory autism training for all health and social care workers in the Health Service Executive and in Section 38 and Section 39 organisations who provide services on behalf of the Health Service Executive.
- Ensure that understanding autism training is a component in all higher education courses relative to health and social care, including medicine, nursing, dentistry, occupational therapy, speech and language therapy, physiotherapy, social work and psychology.
- Formulate guidelines for autism-friendly service design and built environment design within health services, including general practice, physiotherapy, dentistry and mental health services.
- Initiate an independent review of CAMHS (Child and Adolescent Mental Health Services) practices in respect of service provision to autistic children and investigate reports of discrimination against autistic children referred to CAMHS.
- Develop clinical guidelines – along the lines of the National Institute for Health and Care Excellence Guidelines in the United Kingdom – for undertaking an autism assessment and ensure that they are adhered to by professionals within the public health sector and the private health sector.
- Liaise with the Department of Education and adopt an approach which integrates the School Inclusion Model and the Children’s Disability Network Team model to ensure that in-school therapies are available along with community-based services for autistic people.
- Review the application processes for social housing and other housing supports to ensure that they are accessible to autistic people and disabled people.
- Ensure that autism is regarded as a sensory disability by all Local Authorities for the purposes of accessing prioritised social housing provision.
- Provide adequate grants to allow for sensory rooms to be added to homes and the sensory-proofing of homes for autistic people.
- Recruit a designated Disability Officer in every Local Authority to advise autistic people and families on accessing supports and assist them to complete the application process, where needed.
What does AsIAm think of the Oireachtas Autism Committee Report?
AsIAm warmly welcomes the Oireachtas Autism Committee Report and agrees with all its findings – the Report is wide-ranging, thorough and comprehensive and its contents largely reflect the diversity of views and experiences of autistic people and the wider autism community. We also welcome that the Committee listened and took on board the views of autistic self-advocates and gave them equal weight to those of professionals, representative bodies, family carers, valuing expertise across a wide range of fields. This shows the value that lived experience can bring to policymaking and that the mantra ‘nothing about us, without us’ permeated through many aspects of the Committee’s work. We also welcome that the Committee also considered the views of autistic women and girls, autistic members of the LGBTQIA+ community, autistic people with co-occurring disabilities, and non-speaking autistic people. Including these voices is a vital part of making sure that recommendations have the desired outcome and that disabled people and other underrepresented groups can also benefit from any changes which occur from this Report and allow these communities to have the same opportunity to vindicate their rights. In summary, the Committee’s findings set an ambitious vision for including autistic people and disabled across many strands of Irish society, and for their living experiences to be given equal weight to academic and professional expertise and to be a core part of making and delivering policies which affect their lives.
AsIAm calls on the Government to act on the Report’s recommendations, and to implement the actions recommended by the Committee within the framework of a National Autism Strategy.
Speaking on the launch of the Oireachtas Joint Committee Report, our CEO Adam Harris said that:
“We know all too well the impact that many similar reports and initiatives not being implemented have on autistic people and the community. When progressive and forward-thinking recommendations on paper do not translate to the much-needed change on the ground that many autistic people and families have been calling for, this leads to a situation where many families feel let down too often by the State and to an understandable loss of trust amongst our community. Isolation, social exclusion, and lack of understanding, support or lack of opportunities should not be accepted as inevitable aspects of being autistic or raising an autistic person in modern Ireland. This is why we are calling on the Government to act on the Joint Oireachtas Committee on Autism’s recommendations so that autistic people and our community have the same chance to belong, feel included and to be accepted as a part of the rich fabric of Irish society. We urge the Government to particularly act on the specific recommendation to create a legislative mandate that obliges the Government, and the Department of Children, Equality, Disability, Integration and Youth, to develop and maintain a national autism strategy in partnership with autistic people and the wider autism community.”
Over the coming weeks, AsIAm will be engaging with stakeholders on key issues which have been highlighted in this Report.
Later this summer, AsIAm will launch a community-led campaign to ensure that Government accepts and moves swiftly on the Report’s findings and recommendations and brings legislation to put a National Autism Strategy on a statutory footing to the Oireachtas during the next term.
Finally, we would like to thank Cathaoirleach Senator Micheál Carrigy and all the members of the Joint Oireachtas Committee on Autism, their parliamentary staff and parties, all the Oireachtas staff who supported their work, and to everyone who sent submissions and who gave testimonies and who engaged on these issues for all their hard work during the lifespan of this vital Committee for our community. We look forward to further engagement on these issues over the coming months ahead.