Joint Committee on Autism publishes Final Report, makes 109 recommendations for greater collaboration across Government to provide joined up service provision for autistic people

Launching the report, Senator Micheál Carrigy, Cathaoirleach of the Committee, said: “The Joint Committee on Autism was established with cross-party support in February 2022 in the context of limited progress in improving services for autistic people. Several key issues were identified by the Committee, including delays in Assessment of Need, poor access to assessments and services, the lack of inclusivity in education and a lack of employment supports.

“From June 2022 to May 2023, the Joint Committee on Autism has had significant engagement with a variety of stakeholders regarding the provision of services to the autistic community. Throughout the course of our 23 public meetings, myself and my fellow Committee members learned a great deal about the challenges faced by the autistic community and those who support them.

“The Committee was privileged to hear directly from autistic self-advocates and the families of young autistic people. Members 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 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 calls on the Government to adopt this report and to implement its recommendations.”

The key ‘whole-of-government’ recommendations made by the Committee are:

• 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 for Disabilities of the day to address both Houses of the Oireachtas annually to provide an update regarding its progress;
• Initiate national autism acceptance campaigns to promote the participation of autistic people in all areas of social and cultural life along with targeted campaigns in key areas such as education, employment and health;
• Initiate consultation with the autistic community and their families to establish how best to collect disaggregated data for the purposes of forward-planning;
• Ensure that the needs of autistic people are taken into account when designing all public services and include the autistic community when designing autism-specific services;
• Establish a dedicated cross-departmental unit in the Department of the Taoiseach to facilitate a whole-of-government approach to autism and to embed joined-up services;
• Ratify the Optional Protocol of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) without delay;
• Ensure that all government departments develop an autism policy;
• Develop a long-term workforce planning strategy to address staffing issues in disability services, including recruitment and retention of staff;
• Establish a ‘One Stop Shop’ programme wherein autistic people or those who think they may be autistic can receive information and can link in with the services that they require.
• Provide adequate financial supports for families who access assessments and supports privately due to their unavailability in the public health system until such time as vacant positions within CDNTs (Children’s Disability Network Teams) have been filled.

The Committee also made recommendations across a range of sectoral areas, including Disability Services, Health, Education, Further and Higher Education, Employment, Social Protection supports, Housing, public buildings and Universal Design, and Alternative and Augmentative Communication.

Members of the Committee also visited the Middletown Centre for Autism in Co Armagh, a cross-border facility which was established to promote excellence across the island of Ireland in the education of children and young people on the autistic spectrum. The Committee recommends the Department of Education review its policy in relation to the role and priorities of the Middletown Centre, and also liaise with its counterpart in Northern Ireland to negotiate a mutual increase in funding to expand their services and apply their best practice model nationally.

The Committee also met with representatives of the Scottish Government to discuss the learnings from their review of the Scottish Strategy for Autism and their ongoing plans to make Scotland a more autism-friendly country. The Committee calls for the establishment of an ad hoc committee or cross-party group in the Oireachtas to monitor the implementation of its recommendations and those of the Autism Innovation Strategy, similar to the Scottish Parliament. The Committee is also working with the Equality, Diversity and Inclusion Team and the Houses of the Oireachtas Commission to make Leinster House one of the first autism-friendly parliaments in the world.

Senator Carrigy said: “The recommendations contained within this report were also informed by a broad range of witnesses including academics, service-providers, policymakers and more. We are grateful for the considerable engagement which we had with all of our stakeholders. Their expertise is greatly appreciated and it is reflected in this report.

“There is a need for society to better understand and include autistic people. Moreover, there is a need for urgent action from the Government to address the stigma associated with autism and to improve the provision of services to autistic people. The Committee asks that this report is debated in both Houses of the Oireachtas and that its recommendations are implemented by Government.”

The Final Report of the Committee on Autism is available on the Oireachtas website.

The Joint Committee on Autism had 13 Members, eight from the Dáil and five from the Seanad. It is now dissolved.