Anne Rabbitte (Galway East, Fianna Fail) | Oireachtas source

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.