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Joint Committee on Autism debate -
Tuesday, 12 Jul 2022

Autism Policy: Discussion

I welcome everyone to the third public meeting of the Joint Committee on Autism. We have received apologies from Senator Flynn. Before we start business today, I would like to read some formal notices and the Covid-19 code of conduct.

The Ceann Comhairle of the Dáil, Deputy Ó Fearghaíl, and the Cathaoirleach of the Seanad, Senator Mark Daly, published a Covid-19 code of conduct for the parliamentary community in May 2022. Members, staff and visitors are requested to continue to be vigilant and follow public health advice on preventing the spread of Covid-19 infection so that we can continue to manage risk for ourselves and for others who are more vulnerable, including colleagues and their family members who may be elderly or have underlying health conditions or both. All members of the parliamentary community and visitors are strongly encouraged to wear face masks in busy or crowded locations in the Leinster House complex. Medical grade masks should be worn whenever recommended by the public health advice and should be worn for ten days after diagnosis of Covid-19. This will help to reduce the risk of Covid-19 spreading among the parliamentary community. I ask for everyone's full co-operation on this.

On privilege, I remind members of the constitutional requirement that they must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the parliamentary precincts will be asked to leave the meeting.

On behalf of the committee, I would like to extend a warm welcome to the Minister of State with responsibility for disability, Deputy Rabbitte, and her officials. On World Autism Awareness Day in 2021, the Minister of State, Deputy Rabbitte, announced the Government’s intention to develop an autism innovation strategy in consultation with stakeholders and the public. The committee welcomes the Minister of State’s commitment to making Ireland a more autism-friendly country. We look forward to discussing how this can be achieved with the Minister of State.

We also look forward to our second session this morning when we will hear from Mr. Adam Harris, CEO of AsIAm. AsIAm is Ireland’s national autism charity and we are delighted to welcome Mr. Harris to contribute to today’s discussion on autism policy.

Before we hear from the Minister of State, I propose that we publish her opening statement to the committee’s website. Is that agreed? Agreed.

I suggest that the Minister of State should make her opening statement for approximately ten minutes, after which we will have questions and comments from members. Each member will have roughly four minutes. Members may speak more than once, should we have time at the end. The session will last for an hour and a half.

I now invite the Minister of State to make her opening statement.

I thank the committee for inviting me here today to discuss the work that the Government is undertaking to support people with autism. At the outset, as Minister of State with responsibility for disability, I recognise the clear value of national action on autism. I recognise the need to address the bespoke challenges that people with autism face today in Ireland. These challenges occur at all stages and facets of life, from healthcare to education, employment, housing and other areas. It is for this reason that I have prioritised the development of a national autism innovation strategy.

On World Autism Awareness Day in 2021, I announced the Government’s intention to launch an autism innovation strategy to deliver real and tangible solutions to the challenges and barriers faced by people with autism and to deliver on the commitment to act on autism set out in the programme for Government. A budgetary allocation of €100,000 was secured under budget 2022 for the purpose of designing and raising awareness of such a strategy.

There are a number of key processes under way to make the autism innovation strategy a reality. In April this year, I launched a public consultation seeking submissions to inform an initial draft of the strategy. I am glad to say there was a very positive response to the consultation from individuals, from their families and from representative organisations.

I also opened an expression of interest process in order to appoint an oversight and advisory group that will ensure that the strategy is being implemented appropriately and will monitor the delivery of progress. It is intended that this group will have strong representation from people with lived experience of autism and members of the neurodiverse community. This process closed at the end of June and I will consider the applications received and appoint the members of the group over the coming weeks.

Engagement and consultation with autistic and neurodiverse people and their representative organisations is key in developing any new policy measure. In line with our commitments under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, it is critical that the strategy be co-designed and informed by the lived experiences of people with autism, their families and their representatives. That has underpinned our consultations to date and my Department will work with the members of the oversight and advisory group and with colleagues across Government to compile a draft strategy. We will ensure that there is an additional public consultation before the strategy is finalised to allow key stakeholders and the public to have a final say before the strategy is published at the end of this year.

My officials are also engaging with colleagues across Europe to learn from the experiences of other countries and to pool best practices to inform the development of our own strategy. The week before last, some of my officials met officials in Malta to discuss their autism strategy, how it was developed and how its implementation has worked to date. Each key pillar of the Irish strategy will be rooted in the aims of increasing awareness, promoting innovative solutions and empowering autistic people. While previous Governments have looked into developing such a strategy and, indeed, organisations such as AsIAm have long campaigned for one, this Government will be the first to actually develop one in Ireland. It is my intention that the autism innovation strategy will specifically identify and develop steps to address gaps in existing supports for people with autism in an agile manner that is localised in and sits in harmony with wider disability measures and supports.

The autism innovation strategy will complement our existing national disability inclusion strategy, NDIS, and the comprehensive employment strategy, CES, for people with disabilities. It is important that in creating bespoke supports for autism we do not create a hierarchy of support structures based on differing disabilities. By operating in harmony with the NDIS and CES, the autism innovation strategy will be informed by wider policy development and vice versa. This represents the kind of co-ordinated and joined up policy-making that is needed.

There should be no doubt about the commitment of the Government to making equality of support and of opportunity a reality for all people with autism in Ireland. I will continue to work with colleagues right across Government to address the needs of people with autism in a co-ordinated and comprehensive manner.

Earlier this year, I supported funding for a telephone information line for the autistic community which is being operated by AsIAm. The information line operates five days a week and offers callers the information and community-based support they need, insofar as is possible, without the need for external referral.

I recently joined the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, at the launch of a new innovation to support autistic students and those with an intellectual disability in accessing third level education. The proposals, which will form part of the proposed new national access plan, will allocate ring-fenced funding of €3 million per year to 2025. This will support higher education institutions to implement universal design and inclusive practices on their campuses and enhance opportunities for students with intellectual disabilities in higher education.

These are examples of how the Government is proactive in its support for autistic people across the country and I look forward to building on and further co-ordinating these measures. I am aware of the challenges faced by autistic people in accessing disability services and therapies. As Minister of State with responsibility for disability, I am committed to working with the HSE to explore how services can be better delivered to people with autism and to create greater awareness of autism.

A particular priority is ensuring timely and equitable access to therapies and supports for children with autism to enable them to achieve their full development potential. The establishment of children's disability network teams, CDNTs, marks an important reform in this regard as we work to ensure equitable child and family centred services across the country. Having met many families, I am acutely aware of the current frustrations regarding the lack of services for children and young people, including those with autism. The Government has committed funding for additional posts to enhance the capacity of CDNTs to ensure that services can be provided.

To conclude, I am aware there is a need for additional measures to support the health, education, employment and other needs of autistic people in Ireland. It is my intent that the autism innovation strategy will provide an effective mechanism for addressing these gaps in an integrated manner with wider disability supports and will pave the way for Ireland to become a more autism-inclusive and neurodiverse-friendly country. I thank the committee and look forward to questions from members.

I thank the Minister of State. We have circulated speaking slots for today to members. The first speaker is Deputy Tully, who has four minutes.

I want to talk about the positives, namely, the autism innovation strategy and the national access plan, which I welcome. We all want them to proceed without delay. The main issues we are contacted about are assessments of need and a lack of therapies. A manager in one of the CDNTs told me the majority of children being referred to her are children with suspected autism. The assessment is vital in order for them to not just receive a diagnosis but to get a proper school placement and proper follow-up services. As the CDNTs have a significant problem with recruitment and retention, what measures have been taken to deal with this? Does the Minister of State expect the recruitment process to improve this year?

I refer to the need for cross-departmental co-operation between disability services, child and adolescent mental health services, CAMHS, and education. A lot of children who do not get the supports they need or are in an inappropriate school placement develop anxiety and need mental health supports. CAMHS does not seem to be addressing the needs of the children in many cases, especially if the services are told a child is autistic. That seems to be a problem. There needs to be better co-operation between all the teams, because I have heard from one side that it is not getting information and co-operation from the other.

There are many other issues that time is very limited. Public attitude is one of the things need to change. I have previously raised with the Minister of State the issue of respite services for children and their families. There is a severe lack of such services, not only in my area but all over the country.

I thank the Deputy for her question. She raised the issue of recruitment. The current model is not working and has to change. At a recent meeting, the Minister, Deputy O'Gorman, and I met the national team from the HSE, along with Paul Reid. We agreed that a roadmap would be put in place to ensure that we could attract more people in the sector. While the plan has not been finalised by any manner or means, I will provide some examples. The Departments of Health and Children, Equality, Disability, Integration and Youth and the HSE agreed to come together and compile the report together. It is approximately four weeks since we had that meeting. We also had a meeting with the Taoiseach at which the Minister for Education, Deputy Foley, and the Minister of State, Deputy Madigan, were present

As for the plan, the HSE currently does not have a pay grade for behavioural therapists. We are producing them but we are not recruiting them. One of the first requests was the HSE put in place a pay structure for behavioural therapists. Second, we found we did not have occupational, physical or speech and language therapists on the critical skills list. We have written to those responsible for it and those professions are now on it.

We also have a problem with recruiting students who have recently finished college. They have to wait for CORU and everything else to come through. We know what the process is regarding that. It is not time sensitive to our needs. We have put forward a proposal that we recruit directly from colleges and while doing so, we would put people on an assistant level until CORU applications come through. The Minister, Deputy Harris, has announced an extra allocation of posts but we know it will take a while for that to come through. It is good to have it in the mix and it is welcome that the need for therapists has been acknowledged. Another piece we have added relates to people who trained in the UK or elsewhere abroad. If they come home and are missing a component of what is required, we will recruit them and the person can meet the need for that specific component while training in service. On the need to return therapists to special schools and the validation of therapists in new schools, such as Rochestown and Carrigaline and a number of schools in Dublin which do not have any therapists on staff, they will be validated into the programme. The last piece we need to deal with in terms of recruitment is work experience for therapists who are in training. At the moment, we do not have a proper number of people in clinical posts. There are only 70% in post, which means that we have a gap of 30% in the number of therapists required on our teams. If we could increase the figure to 90%, we could provide training on the job. That does not happen at the moment in any of the teams. It is critical that trainee therapists get the opportunity to train on teams.

I could not agree more with the Deputy on CAMHS. There needs to be a national access policy. It has to work in a number of ways. It has to be integrated into primary care, mental health and disability services. At certain times, the need within a diagnosis might change. If the preliminary diagnosis is autism, but a child now needs to be reassessed for attention deficit hyperactivity disorder, ADHD, and needs to have integrated access, that must be universal across all disciplines. I spoke the Minister for Health, Deputy Stephen Donnelly, and the Minister of State, Deputy Mary Butler, about the need for better integrated access when it comes to autism and access to services only last week.

Respite in the Cavan-Monaghan area is currently under discussion. In one count,y children only get respite every second week and there is no designated respite house. I am discussing that with the local community healthcare organisation, CHO, manager as we speak.

I commend the Minister of State on her work to date and on the enthusiasm with which she meets the challenges relating to her very busy portfolio. Following on from Deputy Tully, the Minister of State will probably know what I am going to raise. I will be very parochial about it. The Minister of State has visited the children's disability network team in Longford. It is fair to say there is a crisis there. We have scheduled staff of 9.5, with 4.5 vacancies and 0.8 of a speech and language therapist position has been recruited through agencies. On the whole, the team it is operating with less than half the staff required. On 1 June, there were 786 children assigned. One in four children still await autism diagnoses. The current average wait time is 2.5 years. Thirty seven children have been waiting more than four years for autism diagnoses. I appreciate what the Minister of State is doing about recruitment, but that is a crisis. I was struck by one of the comments to the effect that autism presents bespoke challenges. We all agree that no two diagnoses are the same in autism but this is a crisis that needs a bespoke solution. We have put a proposal to the Minister of State in the context of putting therapists into schools and taking the pressure off team 8. Will she provide an update on that proposal?

I know the Minister of State is working, as in Cavan, on an overnight respite solution for Longford. Can she provide an update on that?

I am very pleased to see that her team has engaged with special education, and with the staff in Malta. It is a benchmark for what we should be doing. We have all been contacted by parents who have been unable to access the summer programme. Her team will be aware that Malta runs an 11-week programme. We are passed the time when schools can opt out of providing the summer programme. Will she give an update on how she intends to challenge that?

The Minister of State will be aware of the issues with the summer camp in Longford. Traditionally, it would have used the facility in Cavan. That was booked out by other counties and it was not available to them. They are looking to put a plan together for August. It is regrettable that it has been farmed out to Bluebird, a third-party care agency, and that the service is less than adequate. If anything, it is disrespectful to the parents but more importantly to the service users. I have given the Minister of State a lot to deal with.

It is best if I start with the good news. On respite, we have found a solution for Longford. It was one of the counties where we had no children's respite whatever. It was a county with no respite house because that facility had closed some years ago. Since my meeting in Longford, I can say that we will deliver a respite house in Longford before the end of the year. It will be open 48 weeks of the year. That will support the 250 families the Deputy would talk about. That is coming.

On the bespoke model involving therapists going into schools, I have clearly said that we need to return therapists to special schools. That goes without saying. The Deputy is right. There are children in mainstream education who also need to access services. They are not getting that at this time. The parents who the Deputy mentioned and who he represents are already collectively clubbing together to pay for therapists to go into the schools. There are approximately 250 children across a number of schools where they have had to put the services in because they had not received services for such a long time. That is not the way the system should operate by any means - where children and families are left with no option. That is on my desk. A proposal has come in on it and I have not ruled anything out. I would prefer the system to work and for the local children's disability network team, CDNT, would make its way into the schools there and there would be a comprehensive approach, working with our partners in education to deliver it. At the same time, we cannot leave children without any therapies whatever. The local team there is coming back to me with a proposal on that.

The Deputy asked about summer provision in Longford. July provision needs to work differently from the way it does now. I will probably say something outrageous in stating this, but what is there is not working. July provision is not working. It should not fall within one sector. It needs to be cross-Government and cross-departmental working together. We should no longer call it July provision but it should be a summer provision, no different to what they have in Malta but we also need to use our trainee therapists, the third-year and fourth-year trainee therapists and our third-year trainee intellectual disability nurses. We need to work with our trainee behavioural therapists. It should not all be just a medical model but a more holistic model that we use the training.

We should be working with our partners in education to support that and our trainee teachers but it needs a more holistic approach to ensure that the system can work. There is a great pool of people. Let me not forget the special needs assistants, SNAs, either. Without burning anyone out, we should widen the pool to have more people be able to participate on it, particularly people who know the children, too. Summer provision is also a respite service. That is what it is to families. Children need that routine. We know, coming out of Covid when we did not have respite houses, that not having July provision sets children back. Parents understand this well. Regression takes place and bringing them back into the system in September does not work. We need to have continuity of intervention all the way around. In fact, it should be the choice of the parent when they send or do not send their child to a provision rather than when it is or is not available. We need to turn the narrative around on that.

I hope that next summer, working with the Minister of State, Deputy Madigan, and the Minister, Deputy Foley, across Departments, that we should have a different approach. We will also work with the Minister for Further and Higher Education, Research, Innovation and Skills. We will use the therapists, we know where the pool is, and we will pay them. Let us be clear about this. If we were really ambitious with the therapists who are coming through, they could use that time as part of their accredited training that can be used as part of CORU. As I already told Deputy Tully, they are not getting the opportunity to work with children with disabilities. We need to create that pathway. If the summer provision is one of the models, we need to look at that.

What about the summer camp in Longford?

It is very unfortunate what happened with the summer camp in Longford. As day follows night, it has always been there. Why the HSE did not book the space in advance, I cannot say, but it is not acceptable.

Deputy McHugh is next.

Apologies. I am not within the precincts of Leinster House. Am I still able to contribute?

I am afraid not.

That is why I messaged the Chair to say that I was online but I am not within the precincts. I am unable to contribute. I thank the Chair for offering.

I thank the Minister of State for her opening statement. I was there at the launch of the funding for the national access plan for universities. It is very encouraging. My issue has always been around service delivery. It is there in the Minister of State's statement and she acknowledges up from that the challenges for delivery for children with autism in particular, and their parents are acute in my area. I am at the point where I do not know how to do back to parents so often have I raised their issue with the HSE and the Minister of State's office. I mean no disrespect to the Minister of State, I accept her bona fides and how hard she is working but some of the replies I get from the HSE are outrageous. I have raised this before. The Minister of State and I met on 6 April and I raised this directly with the HSE on 26 May at the Committee of Public Accounts. Today is 12 July. I have been raising some of these cases for two years. I refer to one case in particular. It is a young girl, who I will refer to by her initials A.S. This is an example of the standard of reply from the HSE. I received a letter back on 1 February 2022 from the HSE to say that A.S. had had her assessment of needs completed on 10 May 2021 and was subsequently referred to the HSE school age team on 20 May 2021. So I got back to her parents and said "That is great, isn't it?"

I was told by the parents that they had read my letter and were a bit confused, given that she had never been assessed by the HSE. I went back to the HSE to say it turned out that A.S. had not been assessed, because her parents said as much, and that I was pretty sure they knew what they were talking about and what the situation was. The HSE apologised and said that it was an error. I was told the HSE would come back to me with an update, but I am still waiting for it. That is just one case. I have brought these to different levels of attention. I have a pile of these cases on my desk and the Minister of State knows I have raised them with her directly. That is just by way of the standard.

I am an elected Member of Dáil Éireann. My fellow Members and I raise these cases time and again with the HSE. I cannot imagine how difficult it is to be the parent of an autistic child with acute needs. Parents have to navigate that on a day-to-day basis, try to support their children and, at the same time, has to navigate the HSE and try to get assessment of needs and delivery of services for their children.

I am beyond embarrassed at this point to go back to parents. I did not even tell them I was raising this today, because I am too embarrassed. Every time I have raised it during Questions on Policy and Legislation, at the Committee of Public Accounts or directly with the HSE, I go back to say I have raised it and I hope to get an outcome, but nothing ever happens. I am too embarrassed to tell them. It has been going on so long.

I am very much encouraged to hear about the meeting four weeks ago and that there will be some momentum now from the HSE, God between us and all harm. Let us hope there is, because delivery is needed. How many therapists will the momentum generate? What will the impact be on service delivery? That is all that matters.

I apologise. I am not an apologist for the HSE but, as Minister of State with responsibility for disability, that sort of response is absolutely soul-destroying in that somebody does not know who is on the system. The suggestions I have put forward to Deputy Tully and shared with the committee are mine. I have not seen the HSE's suggestions yet. I have a list of suggestions from listening to the members tell me how the system can work.

The PDS programme was ten years in the making before it happened, but there did not seem to be ten years of planning and delivery, because it fell between every gap one could imagine. Some 743 therapists are now not in the system and there are unfilled posts. I presented my suggestions as to how I think. I am not a clinician or a clinical need. I am a mere politician who is working with my constituents, as the members are with theirs, to try to find solutions. If I think my solutions might go some of the way, I look forward to suggestions by the HSE, which is paid for and tasked with finding solutions. I look forward to how it can bolster what I have already said to bring delivery in a timely fashion.

Agreed. It is the HSE's responsibility to do so. We can put forward suggestions but, at the end of the day, the HSE has the clinical expertise and at least in theory, the management expertise. It is the HSE's responsibility to collate and co-ordinate that and delivery it for parents. The likes of the Minister of State and I try to come up with practical suggestions with no clinical or health management experience. All we can do is hold the HSE to account, but it has to happen.

It certainly does. It is important that it happens in a timely fashionable and is measurable and accountable. While I talk about the 743 therapists, I need to see those numbers go down and find their way into positions. We need to go from a 30% to 40% gap in vacancies. I need to near my 90% operational piece, where I can have trainee therapists on site. That is my ambition and it has to be delivered at a timely pace. To be honest, it is important for me to clearly tell the Deputy that there is a policy shift in the Department of Children, Equality, Disability, Integration and Youth and the Department of Health. It is not that the Minister of State says that she would like something. We need to make a transition while the progressing disability services for children and young people, PDS, programme is being rolled out. It is not an aspiration. It is a policy shift supported by the Taoiseach and Government colleagues.

I know the Minister of State has been doing a lot to try to get services up to scratch. At the end of the day, that is what we really want to hear. This is where we get most queries from families. As the previous Deputy said, it is impossible to go back to parents without any information. Two weeks ago, the Dublin 12 autism group organised a round table for families to speak to Deputies to explain their situation with their children. Of eight parents, six of them had paid for private assessment of needs, cognitive assessments, mobility classes and speech and language therapy, which costs €130 per term.

The Minister of State indicated that there is a gap of 743 therapists in the system. Her concept is to bring more trainees in to fill the gaps and get them trained on campus. Does that figure of 743 relate to both CDNTs and schools? Schools have considerable problems in accessing therapists and behavioural therapists. Will the Minister of State go into that in more detail? She spoke about outsourcing access to therapy. Will she expand on that? I wish to know exactly what she is thinking of. I do not want to see something like the national treatment purchase fund develop for children who need access to therapy and assessment of needs.

Some of the 743 posts will include special schools posts, which were halted last year. There were 85 therapists posts, but some of them have been recruited into. It does not include all special schools. They are a make-up of the posts I recruited for in 2021 and to date in 2022, and the additional 85 special schools posts last year. People have also failed to identify that we have lost staff from our CDNT teams. We have lost staff to primary and acute care. That is why the number is so high.

In the current budgetary cycle, I plan to seek additional funding to ensure that therapists are added to CDNT teams to cover special schools and new schools, which is not included. The 85 therapists posts are included, but I know from Deputy O'Sullivan's side, that I need to add another 30 therapists which are needed for Cork schools. That is part and parcel of it. Additional funding is required for additional therapists posts for the special schools.

Deputy Collins wishes to tease out the idea of outsourcing. Outsourcing is about using the private sector to assist us with some of the assessment of needs. I am not saying the private sector will assist us with all of it by any manner or means. Four of our nine community healthcare organisation, CHOs, are currently using various operators to assist them in the delivery of assessment of needs. They can only do it to a level of €25,000 because of procurement procedures. They use that bulk of money to do it and it works successfully. I have seen it working very successfully in CHO 2. It works. Outsourcing will complement our assessments of needs until such a time that we are in a space where interventions are happening and it is not all about assessments. We need the therapists on our teams to also deliver interventions.

The system is overwhelmed at present. It seems to be focused on assessments and not enough on interventions. We need to create a balance. However we create the balance, I do not want people getting private therapies and finding it difficult to them come into access services, because they have left the system. I would prefer to keep everybody in the system, if I could, and bring everybody along the journey as quickly as possible. That means I have to work with outsourcing in conjunction with the proper clinical oversight from within the teams structure. It is not as though the outsourcing is put out there and there is no connectivity back to the teams.

It would be outsourced but there would be an acknowledgement and notification of who the child is, how they have come back in to the teams and how their delivery of care would continue. It is no different from how we did it with the assessment of needs two years ago when we cleared 6,500, which was fantastic. That was with the old assessment of needs model. That was not a preliminary team assessment, PTA. I know it can be done in a timely fashion but we need to run both parallel with each other. There is no point doing an assessment if there is no intervention because that just frustrates parents. Parents need both.

I thank the Minister of State for coming in this morning. It is much appreciated. I listened to her opening statement from my office. She mentioned that her Department had looked at the model in Malta. Can she give us some insight into where that consultation is at the moment? It is a model that is held up by many as regards European norms and where we should be going as a country. I ask her to develop that point a bit. What contact has there been with Malta and where does she see that going? I would appreciate that.

Unfortunately, I missed last week's meeting with the Minister of State, Deputy Madigan. The July programme is essential to families. The change of routine is brought up with us on many occasions when we meet with families. In Kildare, some schools are not in a position to put it on for a variety of reasons. One suggestion that has been made to me by a number of families and schools, and the Chair has mentioned this as well, is that we should organise regional centres for summer July programme. In big towns where there are three, four or even five schools we could have a centre where that routine can be maintained for families. That is something the Department must look at urgently. Obviously it would not be done for this year but it should be looked at as we proceed into the future. I would welcome the Minister of State's response to that and hopefully her support for it. Newbridge, for example, has four schools and it could have a centre that people could bring their loved ones into. It is so important for the routine.

The Minister of State responded to Deputy Joan Collins on the cost of assessment. I get asked about this on an almost weekly and sometimes daily basis. Parents are paying up to €1,000 privately for assessments of need. Unfortunately, there does not seem to be a lot of help to pay for those costs. A community welfare officer is not a solution, although I have tried that option a couple of times. Is the Minister of State looking at something like that to assist people who cannot afford a private assessment of need, to see if the Government can help them? I appreciate that the services have to be in place for after the assessment of need but first the assessment of need is demanded. Will there be help from the Government with that cost of up to €1,000?

The Labour Party has introduced the Autism Bill 2022. I ask the Minister of State to comment on that. I hope we have her support and that of the Government. Where should that Bill go from here?

The Senator brought up a number of issues. He asked about supporting families and needing to get assessments of needs completed. Families feel there is no option because they are left waiting for so long. That is why I spoke about outsourcing. The assessment varies depending on the need as well. In some cases it could be €1,000 or €2,500, depending on the clinical need for intervention. Families sometimes do not realise that at the start of it. They might be told they will get X but you need to get that fully comprehensive piece. We are looking at all the procurement rules and I am having those conversations around it. That is why I talked about the €25,000. That will not get a lot done in any CHO. We need to get to the European standard of €250,000 and we need to make it very available so we can cater to the need and we are not limited. At this moment in time there are 10,000 PTAs that need to be given back to parents for that reassessment. There is a lot to get done while at the same time meeting other needs.

The answer to the Senator's question about funding is "Yes". That would mean that all children are within the system and that all children could get the proper interventions. Deputy Flaherty asked about where the children are, how we can best deliver services and if they can be delivered in the schools. It is about the mechanism for delivery.

I agree with the Senator about the idea of larger centres. There is a community school in my constituency in Portumna and we have 11 national schools around the place. It has fantastic playing pitches and everything else. Why would we not access it? However, there has to be that continuity at the same time. We need a link with the schools somewhere along the way. We do not need to have the teachers there for four weeks but if we had them or the SNAs coming in there would be a friendly face the children would recognise. We should create that pathway but at the same time maybe we should be bringing trainee therapists or trainee teachers into the schools a few weeks earlier and building that link as well. That is another way of looking at it. There are good success stories in the delivery of July provision. Only last week I visited the PALS early years centre, which is delivering full July provision. There we can see the benefit for the child, the family and the wider community. When a system works well it can work really well. We are missing that in a lot of communities at this moment in time.

I started working on the Malta question about two years ago when I came into office. I took two people over from Trinity College Dublin. They were looking for something to do for the summer and I gave them work experience to go out and research which is the best place for this. They came back with Malta. I am still not in the Department of Children, Equality, Disability, Integration and Youth but I have managed to nudge my way in there and get the funding from the team in the Department. I will pass over to Mr. Brunell because he was doing the engagement last week. He will bring the committee up to date on where we are at.

Mr. Niall Brunell

We have had ongoing conversations with our counterparts in Malta and there has been a very good exchange of information going two ways. There are some areas around the UNCRPD where we are a little bit ahead of Malta and some areas where it is a little bit ahead of us so there is an opportunity there to share learning. Autism is one of those areas. We have had discussions focusing on how Malta addressed the issue of identifying and addressing bespoke needs while not duplicating labour or creating that hierarchy of disability supports. That has been quite useful. We have also had some discussions around the content of its strategy, how it handled consultations and how to access persons who might have complex needs or who might not be caught in the normal consultation process. We have had good progress on that in our own consultation and have produced easy-to-read documents on it but we will reflect on that for the final consultation process. That is ongoing. We have arranged future meetings and Malta has some questions for us in other areas of UNCRPD compliance. Maltese officials want to talk to us about assisted decision-making, for example. There is a good two-way flow of communication there and that will continue.

My first question is a very basic one. Some might say it is even stupid. I have often had discussions with the Minister of State and she has said her job is to advocate for the children. Over the last while she has been torn between the Departments of Health, Education and Children, Equality, Disability, Integration and Youth. Can she clarify where we are now with that process and how that is going to feed into the autism strategy? Are those various Departments actively engaging at this point in time?

My second question relates to recruitment. This issue has been mentioned by most speakers today. I will give one example. We were at a CHO 4 meeting recently with HSE management. They told us the average time it takes to hire a home care worker is nine months. I am not trying to demean anyone's work because the work home carers do is very important but we are talking about specialised staff in different therapies. If it takes nine months to hire a home care worker for the HSE, what kind of timeframes are we looking at for filling speech and language therapy posts and so on?

Summer provision has already been mentioned. The Minister of State said earlier that she, similar to myself, supports engaging student therapists and a whole cohort of people working in care health and education to provide that. Why can we not do that? What are we waiting for? We have €40 million that will probably go unspent. Why can we not do it?

My last question relates to children with autism who are prescribed mental health medication. Are they being included in the CAMHS audit following on from recent controversies? Does the Minister of State have any information on that?

I thank the Deputy. He spoke about my Department actively engaging with other Departments. I believe that is what I am doing. If one can imagine a spider's web, I am stuck in the middle of it and I am trying to work across government and Departments and with all Ministers to find gaps where they exist in the system and address how it works or does not work. I referred earlier to play and language support, PALS, centres, which provide early year intervention for children with autism. Everybody working on a PALS site has to have a Teaching Council number. If a child is out for more than three days, it will lose its funding. We are talking about children aged two and a half to five and a half years. They are expected to be registered as part of the childcare programme and they are also regulated by Tusla. There are approximately 24 such centres in the country. It does not make any sense that there is that level of hierarchy in the delivery of supports for 25 early years providers while at the same time there are 4,200 childcare providers around the country.

What I am saying is that I am working with all Departments. I am working with the early years sector, special education, education and higher education. For me, it is all about the transition planning when a child leaves the early years sector and goes into national school, leaves national school and goes into secondary school, or leaves secondary school and goes on to third level. That is where the gaps are identified and that is where there are the blocks in respect of accessing places within education and higher education. It is about trying to tease that out together. Yes, there are good working relationships, but there are challenges within it as well and I am trying to iron that out. I believe that when I move fully to the Department of Children, Equality, Disability, Integration and Youth I will challenge every Department on the rights of equality of access for all children on a rights-based approach. Children have the right. At present, I am still in the Department of Health. When I move to the other Department I will be challenging Departments wearing an entirely different lens, and particularly with regard to the education space of early years, primary and post-primary.

The Deputy asked about recruitment. He is correct that it takes nine months. If the section 38 and 39 organisations are advertising they can do it in a shorter timeframe. It should not take nine months. It should involve the basics. It should involve child protection, CORU registration and the relevant qualification. It should not be necessary to go through 31 different processes to be recruited to a post. There has to be a swifter way of doing it. It is one of the avenues I am talking about with regard to the targeted national recruitment. The Deputy can see it in his area, although he might not be aware of it yet. A campaign is being put together in CHO 4. If it is a successful campaign, we will roll it out to all the CHOs throughout the country. It is to attract more people to it and more trained therapists. We are also looking at the apprenticeship programme for therapists. We are looking at various levels of getting people in as opposed to waiting for that nine months. I talked about the CORU piece to bring them in as an assistant and then qualify them while they are on the job. Again, it is trying to break down that barrier of the nine months.

I agree summer provision is not working and it has not worked. The let-down is what I hear daily from everybody. An awful lot of money is being put into that system. I genuinely believe in the proposals I have made, similar to the Deputy's, regarding using our therapists, our intellectual disability nurses, the trainee teachers and using everybody. It should not be just one model to deliver support to families during the summer months. The Deputy knows about the Rainbow Club in Cork. Karen O'Mahony could have it filled every day of the week if she had the support and proper funding to enable her to do it. She supports 1,000 children but she is only on a grant of €55,000. That is not good enough, yet she is supporting so many families. There are many more like Karen who are available to do it. We need to bring them into the circle as well as part of the July provision and support and reward them. We need everybody supporting us. It should no longer be just the four weeks. It should be summer provision as opposed to just a July one.

I find the CAMHS piece concerning within the disability space. If a child is diagnosed with autism and re-presents needing additional support, it is about access to mental health care and access to primary care. An integrated access to care policy needs to be refreshed within the HSE piece. Disability can no longer be just sitting out there. We were told when we did the reform that the 91 CDNT teams would sit predominantly over the 96 primary care units, and the reason for that was the integrated access to care. Unfortunately, as many of us know, it is not working right across the CHOs.

The Minister of State always gives me the impression of being somebody who is prepared to roll up her sleeves and get things done. When I hear her talking about things such as a policy shift in the Department of Health, I feel like cheering out loud. However, we have to see that there is actual policy change. The fact that the Minister of State is prepared to speak up about it, say it is necessary and say she will deliver it gives us hope. I very much look forward to seeing the delivery of that policy change on the ground over the next couple of months.

I have a few questions. The Minister of State has answered the question about July provision quite comprehensively. However, representatives of the Irish National Teachers Organisation and the Association of Secondary Teachers in Ireland were before the committee last week. One of the questions I put to them was whether the childcare sector could be part of July provision. They said they did not see a problem, but one of the issues we will face there is that I think one has to be registered with the Teaching Council, and that is a miasma at times. That is another place where we need to get rid of some of the barriers. I ask the Minister of State to examine that. With regard to all the changes she has spoken about in respect of July provision, and she spoke about them with enthusiasm, can she tell us if she hopes to see most of those or a substantial percentage of them in place by next year?

Nobody has mentioned the employment strategy for people with disabilities. The rate of employment in Ireland is half the European average. I need not tell the Minister of State how important access to employment is. What actions are being taken to deal with that?

The local question I wish to ask is about the most up-to-date information regarding respite care provision in south Leitrim. I thank her for her intervention, but I need to know what is happening.

If the Minister of State has 20 seconds at the end, will she talk about the cost of disability?

I will start with some of the good news regarding respite care in south Leitrim. The Deputy was there that day. We were very fortunate that when we all sat around the table we could find solutions. The solutions were within the Sligo site. Everybody was pleased about that. My understanding is that one of those houses is being worked on as we speak. The HSE told me it would be January, but we agreed that day that the site had to happen at the end of the year. I am still working to that target of the end of the year. There are two houses there and it would be dreadful not to use both houses, to be honest. It still would not be a congregated setting by any manner or means. We must actively pursue that, and it is ongoing as we speak. It is important to acknowledge the work of Edel Quinn that day, who was prepared to be agile and pragmatic in her approach to finding a solution. That was fantastic.

The comprehensive employment strategy is going into its third iteration. I take this opportunity to thank the board and the team. They have given endless hours to trying to make this work. There is no denying that we are an outlier so as part of the Assisted Decision-Making (Capacity) Act, ADMC, we are going to put it in legislative terms that the public sector has to go from 3% to 6%. That will be a positive step change. The other piece is the ability programme. I have seen some very positive work in the ability programme since I took office. It is not just a particular location but is supporting 2,400 people across the country. That falls under the funding of the Minister for Social Protection, Deputy Humphreys. This is the cross-government and cross-Department piece again. It is a really good model and it is one we need to retain and expand. It comes under the LEADER side of things and is really good.

The rural social scheme, Tús and the community employment scheme are now open to taking persons with disability allowance, which also is a step change. As there were many barriers there, I acknowledge the Department for listening and responding to that. On the childcare sector and other Departments, to be clear education is not my brief but as it impacts children with disabilities, I must have a knowledge of it to see how we can find solutions. The Department of Education funds early years providers. I talked to the Play and Language Support, PALS, Preschool again about it. Everyone must have a Teaching Council number. They also need childcare qualifications. They are regulated by Tusla. Without places such as PALS, we would not support children with autism in earlier years. We need to look at that model, how we can expand it and invest more into it. It is a fantastic model. It is delivering on the July provision. We need to work across all Departments. The Departments of Education, Children, Equality, Disability, Integration and Youth and Health need to work together on the delivery of care.

We will hopefully address the cost of disability soon. Last week in the Dáil, I gave a commitment to do so within three or four weeks and I hope to follow through on that.

Senator Ardagh is having technical difficulties with the call. Senator Garvey is next on the list, but unfortunately I am bound by the statement I made at the beginning with regard to privilege, that every member needs to be on the grounds of Leinster House. We have time before I speak again if other members want to come back in.

Adult services, including diagnosis and supports, for autistic people were not mentioned. The Minister of State talked about school settings and having therapists in schools, especially in special schools or special classes. Parents say to me that in many cases, because the CDNTs are based on a community where a child lives, children have to travel out of their community to attend an appropriate school. It ends up with children being taken out of school to attend community supports. That does not make sense. Better interaction is needed. As well as that, parents sometimes say to me that a speech and language therapist might come into the school and not actually engage with the children, but instead talks to the teacher and gets information. One parent said that a therapist came in to talk about six children and did not engage with any children or leave a programme of work, but noted that as having dealt with six appointments. There are a couple of issues that could be dealt with.

Access to children's disability network teams was misunderstood as the progressing disability services, PDS, programme model was being rolled out. The access policy states that it should be the closest to home or the closest to your school. The parent has that choice. That was part of the original PDS model from 2009. As it was being rolled out last year, there was perhaps some misunderstanding that it had to be in a set area. Parents have a choice of whether it is closest to home or closest to school. Therapists being returned to special schools will provide an uplift to the 134 special schools and the new special schools that are coming. We then need to look at how we can best meet the needs of all other children. We all know that the best place is in a school setting. We do not need to extract them. We can work better. Going in and not meeting them is not delivery or an intervention. We need to see whether there is a designated room and how we can work best with our partners in education and with parents. I hope that when we look after special schools, we will move to that space.

The school inclusion model is in place in some cases, but it is more about speaking to the teacher than to the child. We need to join that up more. We would then have a service where the majority of children are in a setting with their friends and peers. We need to see how that integration works. I spoke with Adam Harris in AsIAm and his team about how complete integration can work. That is what parents are asking us to do. Parents also have to work. They need the best for their children. When assessments are done, they happen in the school environment, so therapy should be delivered in the school environment too. I have covered those three things.

What about adult services?

Believe it or not, there has been funding in the budget for adults since 2005. Funding was announced in the budget two years ago for the first time ever. We are now providing adult teams for assessments as part of the CDNT. It was ring-fenced in budget 2021.

Adults say that have to pay for assessments.

A structure has been put in place and we will build out those teams.

I am conscious that the Minister of State is probably running out of time. On her visit to Longford, she was probably struck by the location of the CDNT in the old workhouse building. Probably the only meritorious thing we can say about the building is that it was once home to Padraic Colum, the poet, but aside from that, it is a terrible reflection on our commitment to people with disabilities that we are still using that building in a modern age. I have asked the HSE about plans to provide a new CDNT facility. As the Minister of State rightly said, it needs to sit with primary care. There is a plan in place to move it to the Ballyminion site. I am told it is going through the HSE's initial approval process. Once approval is granted, the legal paperwork will be completed and the developer will submit a planning application for the proposed work. I hope the Minister of State can assure me it will be a priority for her to get the work done within the programme for Government.

Absolutely. I was on the site. For anyone here who does not know it, it is a claustrophobic building, so it is not the right environment for a child with high sensory needs. It is a closed space with narrow corridors. One feels that people with additional needs could hardly breathe, particularly if they are on the autism spectrum.

I support both of the Deputy and the Chairman on the primary care site and the complete integration of services. I am aware there is a site there and everything else and that it just needs to be fast-tracked, and I support that.

I thank the Minister of State.

While we have had some technical difficulties, Deputies Joan Collins and Carroll MacNeill have overcome their issues.

I wanted to ask about two things. The Minister of State mentioned equality and the particular pinch points when transitioning from one school to another. There is a further such point when children are coming to the end of junior school. I am getting a lot of children now where school principals are saying they cannot meet the children's needs and they are going to have to find something else for fifth and sixth class. There needs to be additional support in the schools, especially at that point.

The second point is on the special schools and Ballyowen Meadows Special School in particular. I have raised this with the National Council for Special Education, NCSE. It is not clear where equipment for occupational therapy is supposed to come from. The HSE requires them to apply to the Department of Education, which then says that is not a matter for it, so it has fallen between the gaps. There needs to be some engagement with the NCSE on exactly where that is. The committee visited Ballyowen Meadows Special School. There is a fantastic occupational therapy room that needs more equipment. Moreover, as there also is nobody to work in it at present, it is not that much use, though it is a great room. We cannot even get clarity on where to get funding for additional equipment. If the Minister of State could follow that up with the NCSE it would be helpful, or just provide clarity from the HSE.

I thank the Deputy. Aids and appliances are a priority of mine. A total of €540 million is spent every year on aids and appliances and yet I hear about children outgrowing their wheelchairs, not getting access to their shoes and not getting timely assessments for the right equipment. The point I am making is we need to work with education within disability. Within my own Department, we need to hold our own budget to support education, so it is coming through the one stream. Maybe there should be a centralised approach, as opposed to having 91 different fiefdoms, as well as working with our partners in education, special education and in the early years sector. If a child needs it at the beginning, then more than likely the service and intervention will need to continue. A piece I would like to look at, and I have talked to the Taoiseach about it, is our not reusing things. We could bring it back, get it serviced and get that whole recycling piece put into it. I am looking at that very clearly.

If the Deputy is okay with that we will go back to Senator Ardagh.

I will be brief because I am conscious the Minister of State is low on time. I thank her for coming and thank her for her commitment to disabilities. She has moved to the Department of Children, Equality, Disability, Integration and Youth and I look forward to seeing huge gains while she works with her new line Minister. It is a really exciting time and we are putting our trust in her to deliver services and therapies for our children. I wish to highlight the importance, which so many of us have mentioned today, of having services attached to all the new classes and all the new schools and of training SNAs and teachers properly. It is vital. I agree with Deputy Carroll MacNeill's point about equipment. It is not just equipment like wheelchairs and footwear but also occupational therapy, OT, equipment for kitting out sensory rooms, including the equipment children might need in an occupational therapist's gym. It is very hard for the school to put in place a proper, fully-equipped occupational therapy room and the NCSE said that is a Department of Health funding requirement. However, the schools need a better way of figuring out where to go properly for the funding. We need a more streamlined way because it seems to be quite an issue and not just in the school my colleague mentioned. Our Lady of Hope Special School is also looking to get more OT equipment and sensory rooms. This applies to many schools. When you are opening an autism spectrum disorder, ASD, class you need to ensure you have the equipment as well as the staff to support the class properly.

I thank the Senator. What she has reflected there is that this is about integrated delivery of services. That is integration between education, health and the Department of Children, Equality, Disability, Integration and Youth. That must be the new conversation piece. If we are true to our line on the UNCRPD, it has to be about integration and the Government working together across Departments. I do not think any of the Departments would mind funding it but it is about ensuring it gets to the end user. It must be about service delivery. Funding is one thing but we need to ensure the young people who need access to it can access it, regardless of location.

Deputy Harkin wants to come in.

If the Minister of State is under pressure I can come back as it is just a brief question. I will only be a minute. I asked her about next year and July provision. Everyone knows about all the families who are contacting us telling us they are in crisis and feel abandoned this year. We know that for many of those families, things will not change. The Minister of State has many good ideas and we have heard them today but can we go back to families and say we have a very good reason to believe that when next year comes, we will be looking at a different model of July provision that will cater for those who need it and that families will not be in such crisis as they are at the moment? I ask the Minister of State, in a way, to give a hostage to fortune but those families are asking us.

Absolutely. I totally understand why those families are asking us because they hear there are four weeks of July provision and they are lucky if they get a week and they hear they might get two weeks. Then they might hear of a fantastic provider where people get the four weeks and are wondering why they cannot have the same. I also need to recognise, as it would be wrong of me not to, that teachers and SNAs are tired. That is why we need to add into the mix. That is why we need to include more to be part of. That is why cannot leave the burden with a particular group. There is more in disabilities than just the teacher and the SNA. We need to complement each other and talk to that piece about how we can all work together and put it into a summer programme. We know it can be done; I genuinely believe it can be done. I have a willingness to see it done. I want to work with our partners in higher education and primary and post-primary, as well as parents, and actually give therapists the opportunity of the experience of working with children with disabilities. As they are not getting it at the moment, how can I recruit them if they have never had the experience? I genuinely believe there is a better, more enhanced model than what we are doing. We should let the therapists as part of the solution.

I thank the Minister of State. That leaves me. I have a couple of points. Before that, Senator Garvey could not come in to the meeting but she had a number of queries on transport to school when a parent gets their child a place at a special school and the difficulty of accessing that. There is the whole issue of summer provision, which is coming up all the time. It is a struggle to get staff to do it. There were issues last year with people not being paid until November. I think they are due to be addressed this year. I fully concur with the Senator's proposal that all early childhood care and education, ECCE, staff with a qualification should be eligible to work in summer provision. Those are some points Senator Garvey put forward that the Minister of State may want to comment on before I speak.

I hear exactly what she is saying about the ECCE staff. Those staff finish up at the end of June and could be available and to be included as part of the scheme. Why not? We need as many people trained in creating that awareness and understanding of how to work with and support. That is what is should be about. On transport, I am not the Minister with responsibility and I have to keep saying this but at the same time, if a child cannot access the service that is something we must address. Whatever the mode of transport is, we must address it.

Children need to be able to participate in their July provision. It ensures that a child's relationship at home does not fall down and become a crisis situation of needing to access respite. We also must ensure we continue that routine. As we are talking about the spectrum of need, parents know best. They still have to hold down jobs and go to work. They cannot take every August off, because at the moment they already have to take August off if they have a child with additional needs. In some cases, they had to take an extra two weeks of unpaid leave on top of the four weeks.

The Government wants to find a solution. Extra funding was found this year and we have to compliment the Minister for Public Expenditure and Reform, Deputy Michael McGrath, for doing to that. To be fair to the Minister for Education and the Minister of State, Deputy Madigan, they brought in student teachers. They put in place a scale and said they would pay further in advance. This still did not meet the needs, so we now have to ask what else do we have to do to make it work. There is no denying that we need to look to the Maltese model. It is a fantastic model that runs for the entire summer. We have the trainees. We have the ability, capacity and buildings to deliver this. We need to find a model to apply it. We cannot fail any further. We have a good benchmark to start with and we need to build on it.

I have a few points to make. I met with the Minister of State, her officials and Deputy Flaherty at the CDNT centre in Longford. We know it as the Phoenix Centre. I am delighted by the Minister of State's commitment to make it a priority to move it to the new site beside the primary care centre. I understand what she is saying for parents going in there. I mean no disrespect to the good staff working there, but it is not a place for bringing kids, to be honest. I am, therefore, delighted by the Minister of State's commitment. When we met with the parents' group, they brought up the fact that respite was not available. The Minister of State gave a commitment to us that it would be put in place and I am delighted that it will be in place before the year is out. Respite is much needed by parents.

On the summer camp that was mentioned, I agree with the comments made earlier. I do not think it is suitable. I refer to the advertisement to hire staff to provide that service. It states that it would be an advantage to have experience of working with people who have an intellectual disability. That was stated in the advertisement seeking staff to work in that camp. I do not think that "would be an advantage" is acceptable. We need people who are experienced in looking after our kids with the highest needs.

That is a fair point. We cannot have an ad hoc approach. It needs to be planned. We know how many children need support from our services. It is not like we do not know our numbers; we clearly know them. Planning has to be part of the solution. Putting out an advert in the middle of July like that is nearly wilful neglect by the units there.

Another issue is that many therapists have not been restored to special schools. The Minister of State touched on that. There is an actual shortage of therapists. In our meeting last week, I spoke on an issue I feel strongly about, which is the large number of special schools that are not providing summer provision. That is not acceptable. In summer 2023, every school should provide summer provision. We may need to bring in student occupational therapists and student speech and language therapists. As other members mentioned, some qualified staff within the early childhood care and education, ECCE, system are signing on for unemployment payments during the summer, while schools are closed and unable to provide the service. Ultimately, the kids for whom the summer provision was initially brought in are not getting that service now. They are the kids with the most needs, and this is not acceptable. We need to look at different ways.

I am glad the Minister of State looked at the Maltese model. It is a model I have also looked at. Approximately 18 months ago, we spoke with Adam Harris about this and the empowerment Act that was introduced in Malta a number of years ago. For a small nation in the Mediterranean, Malta is well ahead of us in a lot of areas. We need to aim to have fully supportive models for children and families throughout the whole of life, and not just in health or education. It needs to be in employment, where more than 85% of people with autism are either underemployed or unemployed and that is not acceptable. Parents want to know that those supports are in place for their children as they get older.

I fully believe in the school inclusion model and that it is the way forward. I know the trial model used in CHO 7 was successful but, unfortunately, the Covid pandemic came in the middle of that. I said to the Minister of State, Deputy Madigan and her officials last week that we should look to expand that model. I would like that model to be used in Longford. Deputy Flaherty mentioned the figures that show the severe need we have in our county, which probably has the longest waiting lists of people waiting for services and assessment of needs in the country due to the lack of staff. When the Minister of State, Deputy Rabbitte, visited us, we had half a speech therapist for the whole county, with a population of 45,000. Based on the staff numbers we had, it was estimated that we will be waiting up to six years to clear the existing assessment of needs lists. I want us to prioritise those services and get them into schools on a daily and weekly basis. The model worked when it was trialled in CHO 7. I know there is a commitment in the programme for Government that the funding will be put in place to roll that out throughout the country.

I want to put on record that I believe the Minister of State is an excellent advocate in her position. I know she is doing a lot of work on behalf of families and she will make things happen. Having spoken to her prior to the announcement, I know that delivering the strategy means a lot to her personally. I know she will deliver it. She will make sure to get the funding necessary to implement it and make it a success, and that is extremely important for all families out there who have children with autism. I thank her for her time today. I want to see higher staffing levels in the progressing disability services, PDS, model in Longford. In the past three weeks, two occupational therapists transferred to Mullingar and Cavan, so they are no longer in Longford. It is a priority for me and it should be a priority for the Government to fill those posts and not let a bad situation become worse. Would the Minister of State like to make any comments to finish up?

I thank the Chair and members for their time. I greatly appreciate the opportunity to come before this new committee. As I said, the reason I have been invested in the autism innovation strategy is not because I want to create new legislation; it is because I want to knit what we currently have in place and make it work, and to operationalise the system through me being in the centre talking to the Department of Education and the Departments with responsibility for early years, housing, and employment. Disability is not just a health issue. It is across all Departments. When we specifically talk about autism and its diagnosis, health is a needs-based model but, unfortunately, education is a diagnosis-based model. Social protection is a social-based model. Therefore, we have to look at the model. We also have to look at what we have and how we can knit it together.

On my autism innovation strategy, I said to officials and my adviser, Noel Byrne, that we have an awful lot of low-hanging fruit where we can make powerful changes with very good interventions. The summer programme is one of them.

There is also the transitioning from early years provision into primary, post-primary and higher education. We see what I have done with the Minister, Deputy Harris, on that, but we also see what the telephone line has done. The funding of that telephone line is being delivered by AsIAm and it is taking a large number of calls. Being able to signpost families to speak to people with the lived experience has been hugely beneficial to the Department and the HSE, which is a welcome intervention and more interventions like that are required and can happen.

I ask the committee to work with us on the autism innovation strategy. I would love the committee to pick the pillars within education, housing, health and employment and for members to tell us what their experience would be and what they would identify as the three issues that we do not need legislation to unlock but that are practical solutions that we need to work with Departments on. The ask is there and whether it is the ask to deliver the summer programme or how we can increase employment, we have to ask the various Departments to help us make it work. The solutions are there.

I will not shape anybody's thoughts on the matter. I would love the committee's input on it. As I work towards bringing forward the draft, I would love this committee to feed into it. Those are some of the pillars the committee can help us to shape in order to help prevent people falling between gaps. We must support families. The funding is there but now we need to provide the practical solutions that are needed to make the system work for people in the autistic and neurodiverse communities.

I thank the Minister of State. This discussion has been beneficial and informative. We intend that our proposals will feed into the strategy. In the autumn term, we will meet families and discuss their lived experience. I would like to think that the basis for many of our proposals will come from speaking to people on the spectrum about their needs.

Sitting suspended at 12.42 p.m. and resumed at 12.53 p.m.

I welcome everyone to our second session. For the information of our witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. They are again reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in any such way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore if their statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

I welcome Mr. Adam Harris, CEO of AsIAm. I propose that we publish his opening statement on the committee's website. Is that agreed? Agreed. I invite Mr. Harris to make his opening statement.

Mr. Adam Harris

I thank the Chairman and committee sincerely for the invitation to speak here today and for the generous engagement that the committee has already had with our organisation in recent weeks. We were especially appreciative of the opportunity to deliver training to the committee members prior to the public hearings. As members are aware, AsIAm is Ireland’s national autism charity. Over the past eight years, we have been working towards our vision of an Ireland where every autistic person is accepted as they are - equal, valued and respected. Our purpose is to advocate for an inclusive society for autistic people that is accessible, accepting and affirming. We work to support the autistic community and our families to fully engage in Irish life and to build the capacity of society to facilitate true inclusion. In everything we do, we are guided by the lived experience of autistic people, with half of our own team being autistic or neurodivergent. We run a broad range of programmes to realise our vision. This includes the recently established autism information line, the AsIAm autism ID card programme, and a range of supports including social and employment programmes for autistic people alongside formal autism-friendly accreditation for businesses and public services.

The establishment of a joint Oireachtas committee on autism and the drafting of a national autism innovation strategy have been long-standing strategic priorities for AsIAm since our foundation in 2014. We consider the committee's work to be a once-in-a-generation opportunity to create a joined-up approach to support autistic people and our families. We believe this committee can create a blueprint for an inclusive and accepting society and help to drastically shift how autism and autistic people are seen, perceived and empowered within Irish society. We welcome the approach taken by the committee so far and we hope that in the nine months ahead, the public hearings will provide an inclusive, rights-based, neuro-affirmative approach for autistic people and our families to have our voices heard.

There has been an increased policy focus on autism in recent weeks and months. Alongside the committee, we are intensely engaged with the Minister of State, Deputy Rabbitte’s autism innovation strategy consultation. We are represented on the advisory group of the Education for Persons with Special Educational Needs, EPSEN, Act review and we have been working closely with the Department of Education on the ongoing barriers which persist for autistic people accessing their constitutional right to an education. These initiatives are long overdue. However, I must stress that the benefits from any of this engagement will ultimately be judged and assessed on whether it delivers much needed change for the community.

In the past two weeks the committee has focused its attention on the barriers autistic people experience in accessing a suitable and appropriate education. In many respects, the issues at play in the area of education, namely, a lack of effective forward planning, a lack of proactive support and guidance for families, under-resourcing and a need for greater training, culture change and accessibility measures are indicative of the barriers which our community faces in every aspect of Irish life. In a recent AsIAm survey, we documented the experiences of some 268 children who did not have an appropriate school place for September. We believe this figure to be just the tip of the iceberg. We welcome the emergency legislation introduced by Government but see it as just the first step.

One cannot create an inclusive education system simply by permitting people to enter a building. Deeper change must follow and meaningful integration for students in special classes is vital and far from a universal reality at present. We need to take a rights-based approach to this area and that is why our organisation is engaging with the EPSEN Act review and continues to oppose any non-rights-compliant measures such as the establishment of special education centres. As we sit here today, there are many children and young people, especially those who attend special schools or who have the highest level of support, who have been unable to access this year’s summer programme and whose family face a summer without structure or support. I hope that the committee will look at the issues autistic people face in education in more detail and would welcome further engagement in this regard.

It is critical, however, that the committee also look at the bigger picture and the barriers which our community faces right across the life cycle. Across Ireland, autistic people are deprived of the same chance – the same chance to go to school, to access healthcare, to get a job, to live a long, healthy, and happy life. In many respects ours is a community in crisis. We need to see policy change but, critically, we also need to see policy resourced and implemented and we need this to happen urgently. In April, AsIAm published the Same Chance Report 2022. This report consisted of an attitudes to autism poll, conducted with a representative sample of 1,000 Irish adults, and our own autism ID cardholder survey results. The findings from our cardholders survey are startling. More than a quarter, 28% of parents did not believe their child had an appropriate school place. More than half of our respondents had experienced discrimination on the grounds of being autistic. Almost two thirds did not believe the healthcare system was accessible for autistic people and 27% of people did not feel safe in their own communities.

These findings align with the trends we see daily through our autism information line and through the growing body of research, statistics and literature. They are set against a backdrop of increased autism awareness. Indeed, in our poll, 80% of the public were aware of autism as a clinical diagnosis, yet just 40% claim to have a good understanding of autism; an important distinction when it is considered that judgment and attitude is the single greatest barrier to inclusion identified by our community.

Our message to the committee is that, as a society, we need to go beyond autism awareness. It is an important starting point but, ultimately, it does not deliver change alone. The work of this committee must seek to identify means of removing the barriers autistic people face from cradle to grave and empower autistic people to be included, not by changing us but by changing attitudes, enhancing accessibility and ending stigma within society. It is clear that the challenges our community face are not confined to one policy, sector or Department. They are systemic and profound.

When a child is born in the State, most parents can assume they will have their choice of school places and can expect their child to learn, make friends and thrive there. For our community, to even find a suitable place might mean applying to 20-plus schools or settling for home tuition, which is never a substitute for full educational provision. If you are lucky enough to have a place, you will be faced with a series of relentless battles to get the support you need to learn and will often be at risk of a reduced timetable, suspension or even expulsion, just for being you. Making friends may be a whole lot harder. Statistically, it is likely that you will be bullied at some point along the way. Most parents can take for granted that their children will be able to engage in day-to-day activities without supports. The benefits and acceptance that comes from this participation helps to promote self-esteem and positive mental health.

For our community, differences in communication, self-regulation and sensory processing, to name just a few areas, often require access to support in order to be able to engage in education, community or adult life. However, a family may wait many years to get a diagnosis or even to see a therapist. Eight in ten people in our community will experience a mental health condition over the course of their lives and yet we are shut out of mainstream mental health services. “No”, “I am not the right person to talk to” and “We don’t see autistic people here” are perhaps the most common terms our community hears when interacting with disability and health services.

As people grow up, they expect to find work, live independently and feel a part of their communities. For our community, unemployment is a norm, with more than 80% of autistic people unemployed or underemployed. This is unacceptable. Too many adults continue to be deprived the opportunity to work and participate in the community in a manner that meets their needs; pushed instead towards services that are not always focused on the needs and preferences of the individual concerned. For those who secure work, it often means masking who they are, which means having to hide parts of being autistic that others may find uncomfortable or not getting the support they need for fear of being discriminated against, underestimated or treated differently.

Accessing appropriate accommodation and adult day and residential services is a major challenge, with access to any support often only available after a crisis and with few to no pathways for autistic people who wish to live independently or find housing that is suitable to their needs. Going to the shop, using public transport or accessing public services are all mundane tasks for most. For an autistic person, these things often involve sensory overload - sense of being overwhelmed and of inaccessibility. This arises from a lack of suitable training for public servants and businesses, even for those who regularly encounter autistic people.

A long, healthy life is something to which most can reasonably aspire. For our community, low self-esteem, poverty, negative perceptions and attitudes within society and inaccessible healthcare means dying on average younger than most. I know these statistics all paint an incredibly bleak picture of being autistic. Sadly, however, that is the reality for many autistic people in Ireland in 2022. It gives me no pleasure to say this, and I do not want to undermine the very good work and progress that has been made in some areas. Rather, I highlight this because loneliness, isolation, poverty or social exclusion should not be an inevitable part of being autistic or raising autistic people. None of the experiences or outcomes I have described are a prerequisite for an autism diagnosis. A happy, healthy life should not be an exception for an autistic person - it must become the norm. Our community deserves the same chance to be part of the rich fabric of Irish society.

We have already provided a detailed submission to the committee based on our autism innovation strategy submission. This includes 56 specific actions for consideration. While a broad range of actions are required to bring about the necessary change, at this initial hearing, I wish to highlight some key strands the committee should consider and explore in drafting its report.

Autistic people wait too long to receive timely access to supports such as assessment, speech and language therapy, occupational therapy and psychological supports. Too many people are forced to access private services at an enormous personal and family cost, which pushes many people towards poverty. When services are available, they are too often aligned with a medical and behaviourist approach that focuses on compliance or implies the challenge is with the individual as opposed to validating different ways of communicating, thinking and experiencing the world, and supporting a person to participate and develop in life as their autistic selves. Services must not be restricted to children. A public pathway of support for autism assessment and services for adults must be urgently put in place. Supports should also be inclusive of the full diversity of autistic person’s experiences, and instead of taking a functional or medicalised approach, should facilitate people to get supports they need. Supports must also be designed with the needs of women and intersectional minorities in mind. Not providing timely services simply defers and increases the cost of support later at an enormous loss to the individual and society. The State should act as a facilitator, not a gatekeeper. A radical plan is needed and excessive waiting lists must end to ensure appropriate, regulated supports are in place.

As the committee has already identified, much more must be done to support autistic people in our education system. While most young people now attend mainstream schools, this does not necessarily mean they are included. If we truly want to see an education system where every student has the opportunity to attend a school that meets his or her needs in his or her locality, major change is required. This includes addressing the pupil-teacher ratio, implementing mandatory training, ensuring boards of management have the expertise they need, addressing the sensory environment of schools and radically overhauling school discipline policies and the method of educational assessment. Many students suffer greatly in an education system that was not designed with our community in mind and which does not always allow our students' strengths and identities to be recognised and affirmed. Too often, a person or family is provided with a diagnosis with no further context or follow-on support. We must ensure every autistic person and their family has access to supports that empower the person to participate in the community and build the capacity of the individual and family to understand their diagnosis, advocate for their needs and educate those who support them. This included the roll-out of a national post-diagnosis support programme, the provision of key workers and personal assistants and meaningful support for autistic adults to engage in self-advocacy.

Despite the challenges that exist, there is evidence that the public is far ahead of the State in recognising the scale of the challenge and desiring to effect change. All of us are very proud of the strong communities that exist throughout Ireland and this must be better utilised. A programme of supports should be put in place to educate the public to understand autism, run local initiatives and programmes to enable inclusion and ensure every autistic person grows up in a community that is accessible and accepting of who they are. This should take place alongside mandatory training and accessibility measures for public services to ensure they are inclusive of autistic people.

I ask the committee to think radically. The time for local solutions and sticking plasters must pass. We cannot continue to stumble from one crisis to another while our community suffers. We ask members to look to our European peers to benchmark other ambitious national autism strategies and recommend that Ireland not only creates such a strategy but, critically, legislates for it and furthermore, aligns it to the UN Convention on the Rights of Persons with Disabilities, UNCRPD. This strategy would be complementary to existing disability legislation and must have time-bound, measurable goals and corresponding resources.

Covid-19 and the war in Ukraine have highlighted the ability of the State to mobilise and deliver responses. If we put our minds to it, we firmly believe we can create a society in which every autistic person not only receives the supports he or she needs but is empowered to participate and contribute his or her unique skills, abilities and insights.

In 2025, AsIAm will host the Autism Europe Congress in Dublin. We will welcome 2,500 advocates, researchers, practitioners and policymakers from across Europe. What will the Ireland of 2025 look like for autistic people? I hope, through the work of this committee, we will be able to describe a significant shift in how our society perceives and includes autistic people. I hope we can report major improvements in how the State supports and engages with autistic people and family members. I believe that our country, if it wants to, can become an example for others to learn from and follow.

I look forward to further engagement on specific themes with the committee. I will be delighted to take members' questions.

I thank Mr. Harris for his comprehensive and thought-provoking statement.

I commend Mr. Harris and AsIAm on all the work they do in supporting autistic people and their families. I know AsIAm provides support and training to many parents' groups and other smaller organisations which come together to try to support each other. AsIAm does considerable work in creating the awareness that needs to be improved.

As the Chairman said, Mr. Harris's report is very comprehensive. He has given us some stark and frightening statistics as well as some good recommendations. The positives are that this committee has been established and that an autism strategy is being prepared. However, as Mr. Harris said, unless something comes from those, they will be no more than talking shops. Some excellent reports on a range of issues have been produced but just gather dust on a shelf with nothing implemented.

Mr. Harris mentioned that awareness is at 80% which is good, but understanding is only at 40%. How can that be improved? We often talk about improved training for teachers, those in childcare settings and those in further education, but it needs to extend to all people, including all employers. One parent told me about her son who had a masters in IT. She was talking to an employer who was very interested in him and when she said he was autistic, suddenly the interest waned. That is pure misunderstanding of autism in many ways or perhaps not knowing enough about what it might mean and the supports needed. Perhaps education is also needed.

We have spoken about the lack of appropriate school places. One parent contacted me on Friday. She thought she was getting ahead of the posse by looking for a place for her son in a special class in September 2023 only to be told there were no places in the surrounding area. He is in a mainstream primary school and has supports. A NEPS psychologist recommended a special class setting. I asked her what his SENO suggested. She said there was no SENO in place or if there is, she has had no contact. I will contact the NCSE to discuss that case. Does AsIAm have much interaction with the NCSE on creating sufficient school places?

The Minister of State appeared before the committee earlier. Is Mr. Harris confident that the changes she discussed, particularly on the CDNTs, will happen quickly enough to make a difference because early intervention is so important?

Mr. Adam Harris

I thank the Deputy for her questions. We work with many groups around the country. We have recently finished the bridge forward programme with Cavan Autism Parents Support Group, a very good group in the Deputy's constituency. The committee can look to international examples of training which would make a big difference. Legislation recently passed in Westminster will now mandate all NHS staff in the UK to have autism training. That arose from a tragic incident in the UK in which an autistic person was misdiagnosed and did not receive the treatment they needed because there was not an understanding of some of the communication differences. This training saves lives and is critical.

A few years ago, Northern Ireland had an initiative using lottery funding to allow every member of the PSNI to access training. Mandatory training is critical. Training that is bespoke to specific industries is needed.

In Ireland we are not always good at talking about these things and if it is in any way uncomfortable, we shy away from it. We have seen that with many social issues. We have moved people into mainstream schools and now 86% of autistic people attend mainstream schools. We have done it in a very Irish way in that we have not really talked about it. Sitting in classes throughout the country are autistic people whose peers really do not understand. We need to have very targeted awareness campaigns across the educational system. Young people get this when they are given the information they need. It goes beyond just the positive openness to it, which young people have already, but they need the tools to show them how they can make a friend and how they can help somebody if they become overwhelmed. I would like to see awareness campaigns for the general population and also targeted mandatory training particularly for public services.

Regarding education, we have had very good engagement in recent weeks with the new CEO of the NCSE and he has undertaken to meet our organisation once a month in future. This will allow us to keep him informed of trends on the ground which will be helpful. There seems to be a disconnect between the spirit of the role of a SENO envisaged in the Education for Persons with Special Educational Needs Act and what it is in practice. For many families it can feel like a purely bureaucratic task as opposed to actually someone who is holding the child's hand and working with the family.

We need more SENOs in the NCSE. There has actually been a reduction since its establishment and the need has grown enormously. I would like to see a streamlining of the process to support families. There is nothing more soul-destroying than having to apply to 20 different schools, sometimes even when it is clear there will not be place in one at the time parents are given the list by the NCSE. Some streamlining needs to be done urgently. Linked to that, if a child accepts a place that turns out not to be appropriate, the child should remain on the NCSE's books. Many children take their mainstream class place and then drop off the system. Often they are the children for whom the school placement does not work or begins to breakdown.

The issue of CDNTs can be incredibly frustrating for families. It does not seem to be working properly anywhere in the country. To improve access to therapies, we need to return to the Disability Act. We saw how quickly the change to assessment of needs came in once the High Court ruled. As a result, we also need to move to therapies being rights based and not just grace in favour.

I welcome Mr. Harris. Like Deputy Tully, I commend his outstanding work and that of AsIAm. It is great have such a strong advocacy group which not only challenges us but will also help us inform what will be very important policy into the future. I have taken one key nugget from Mr. Harris's opening statement which is that we need to move from mere autism awareness to a system where we are removing barriers from cradle to grave. It is great that 2,500 people will attend AsIAm's conference and it will be an opportunity to showcase Ireland. I know Mr. Harris set us a challenge. He gave a very aspirational vision for Ireland in 2025 and he really challenged us to see if we can give a better service to those with autism.

As Deputy Tully said, some of AsIAm's key requests have been delivered. We have the autism committee and the national autism innovation strategy. Mr. Harris is correct that over the course of nine months this committee can probably develop a blueprint for a better and more inclusive society. As she was leaving, the Minister of State, Deputy Rabbitte, asked us to deliver what are the key asks for this committee.

Some of us have come here with different backgrounds and different skill sets. Deputy Tully has a background in special education. Every day that I attend this committee represents a learning process for me. I am overwhelmed by the challenges the autism community faces which we need to address. It is apparent that it needs to be done as quickly as possible. What are the key things Mr. Harris wants us to deliver with the Minister of State as she has asked us? What are the roadblocks and what are the actions we need to take immediately if we are serious about helping deliver that vision to the 2,500 people who will come to Ireland in 2025?

Mr. Adam Harris

I thank the Deputy for his kind words. We are really pleased by the autism innovation strategy. For a long time, we faced significant Civil Service opposition to establishing a strategy. It has come about through the leadership of the Minister of State, Deputy Rabbitte, and her engagement with us.

I would like the committee to look at the pathways through the process. Every day families face constant roadblocks. People can fall between chairs that they did not even know were there. In the discussion in recent years, concern has been expressed over whether autism is treated better than other disabilities. The diagnosis opens many doors.

In our experience, an autism diagnosis locks an awful lot of doors straightaway - for example, getting a school place, and particularly accessing mental health services. There are a lot of problems. Part of what we need to do is resource services. Earlier the committee debate concerned recruitment, which is a big issue. Culture is also a factor. Even when resources are not always available, then it is to do with how one communicates with families, and signposts people to enable them get to the next stop on their journey. In our experience what very often happens is people are handed a diagnosis report and off they go but they have no idea where to go. When I delivered training to this committee I said that if one typed the word "autism" into a Google search as many as 3 billion results will come up straightaway so families are just overwhelmed and end up spending a lot of money. Sometimes the options they go to are not accredited or are unsafe. Clearer pathways from the get-go would be really good, and one of the areas that we would like to see established is a key worker for families. I mean someone whose job is to provide support through the entire journey as opposed to persons constantly being passed between different professions.

Training is an obvious need and in many respects it is an achievable thing to be put in place. Let us consider all of the battles it took to set up autism classes in the education system. In reality, an autism class is a teacher and two special needs assistants, SNAs. One can end up with a teacher who is fresh out of college and has no experience or training in the area, which is a situation that does not work for anybody. Therefore, I would like the issue of mandatory training addressed.

Another key area is diagnosis for adults, and I am talking in very broad themes. There is a reality that for an autistic person to get a private diagnosis as an adult, it can cost between €800 and €1,500 plus there is very little follow-on support. There have been very good initiatives, such as the Aspect programme in Cork, which show that providing a small bit of support to people at the right time can enable a person to live a fully independent life as opposed to a person becoming isolated and reliant on the mental health or social welfare systems. I have outlined some of our key asks.

Deputy Ó Cathasaigh sends his apologies. I call Senator Wall.

It is great that we have another chance to talk to Mr. Harris. I join with colleagues in thanking him and AsIAm for everything they do for autistic people in this State. It is wonderful that Ireland has an organisation like AsIAm with Mr. Harris at its helm for people who need him. He has outlined many issues for us. I totally agree with Deputy Flaherty that this committee has been established with a nine-month remit and we want to know what we can do to make changes in such a short time. Mr. Harris outlined a number of issues that we need to take on board, and quickly, during the period. I know the Chair is very positive about doing so and preparing our report.

I was alarmed by the fact that there is an 80% unemployment rate in the autism community, which was outlined in the presentation, and I ask Mr. Harris to outline how we can totally reduce that percentage. However, I am aware of a number of services in my own area of County Kildare that help people. A number of towns near me are what is called "autism-friendly". I suspect that they are part of the education piece Mr. Harris mentioned in his introduction. What is his opinion of autism-friendly towns? Does he believe it is a good initiative? Are there advantages and disadvantages? Portlaoise is now an autism-friendly town and Councillor Noel Twomey contacted me recently about the initiative. How can we develop the autism-friendly model and ensure that towns are friendly? Like my colleagues, I have been in shops when autistic people arrived and they were looked at, which is not good enough and is an issue that must be addressed quickly.

I mentioned a lack of the July programmes in many places to the Minister of State. One of the issues I asked her to consider, and I know that the Chair is involved in this matter too, is central locations for the July programme where we do not have enough teachers, SNAs, etc., to provide the programme. The big town of Newbridge, which is in my own area of County Kildare, cannot provide a programme yet there are three or four secondary schools and multiple primary schools in the area. I ask Mr. Harris to comment on the July programme and ask him to support this initiative. As he well knows, a lack of routine for children, particularly during the summer months, is a major cause of concern for families. I believe that this committee needs to address the issue and make recommendations. I know that the Minister of State supports the initiative and I ask for the view of AsIAm.

Mr. Harris mentioned in his introduction that the Autism Europe Congress will take place in 2025 and will be attended by numerous stakeholders. As we have discussed before with Mr. Harris, Malta has been touted as an example of what we should do better in this country and maybe there is something in Malta that this committee should examine. The Minister of State said that her officials have been in contact with their counterparts in Malta and discovered that there are things that they do well that we could copy while there are things that we do well that they would like to copy. I ask Mr. Harris to give European examples that this committee can look at and present to the Minister of State at the end of our nine-month remit.

Finally, Mr. Harris mentioned how much it costs for an adult to get a diagnosis and I raised the following again this morning. Almost on a weekly basis, and sometimes on a daily basis, I deal with families who cannot afford that cost. It is essential that people get an early diagnosis and we all know why. Where can we go to secure support for these families? I asked the Minister of State that question and she told me that we will have that and that she is developing a model that will support families in their pursuit of a diagnosis. Many families simply cannot afford a diagnosis because they cannot get it publicly and have tried to secure a private diagnosis but the cost was prohibitive. Has AsIAm considered a model? Can Mr. Harris suggest a model that we, as a committee, can recommend that the State provides as a help to families who simply cannot afford he cost of a diagnosis?

Mr. Adam Harris

I will touch on all of the issues raised. One of the things about this committee is that it is vital that a few clear wins are identified and actioned in the time that we have available. The Minister of State launched the autism innovation strategy, which will last one year and this committee will feed into that. It is important for the committee to think strategically about what will happen beyond that year, so we need to identify what will take three or five years before we see improvements because some of these problems are deep and systemic. There will only be a committee like this once and reaching an agreed understanding of solutions is really important.

The rate of unemployment among autistic people is hugely concerning. In terms of disability as a whole, Ireland is the fourth poorest performer in the EU but it seems particularly different for autism. There is a range of reasons for the high rate of unemployment and AsIAm has looked quite a bit at the issue. Recently in the organisation a new team was established to specifically look at the issue of employment. This year, we will run two pilot programmes in order to get under the roof of the issue a little bit more. One of the big issues is that a lot of the existing support services that support autistic people to gain employment vary greatly from county to county. Even disability-specific employment services do not always have the confidence or a knowledge of autism so sometimes there really is nobody supporting.

Ambition is another issue. We know that the vast majority of autistic people go to mainstream schools like everybody else. We also know that the children who attend special schools do not have access to career guidance so from that stage in education there is a presumption that an autistic person will not be employed within the community. Let us consider the children who are in mainstream education. There are still so many who when the leaving certificate examination comes around, and if they are not going to college, the conversation straightaway shifts to one of whether they will go to a day service as opposed to thinking that they can work.

To be clear, I believe that every autistic person can have a job but that does not mean every autistic person can work even what we might consider to be a part-time contract. It might be that for some people, one day might be so exhausting or overwhelming but I think that it is about the State giving value to that and still going after those jobs. Yes, the person probably will still need their disability allowance but this is about the dignity of participating and all of the problems that can be removed as a result.

There are two things we must look at if we want to change and one is work experience. Literature shows that if we can expose people to work while they are still in education then the chance of them being unemployed after reduces drastically.

Autistic people in college might have to do a mandatory placement. Many of our young people find they cannot get a good internship because they are so overwhelmed in college that their marks do not reflect the quality of their ability. In other instances we might find that a person is so overwhelmed by college work that taking on a job is challenging. We need to find ways to help people to get work experience while they are still in college because it gives them training and back up.

I am delighted the Senator asked about autism-friendly towns. AsIAm created the framework in Clonakilty so I am probably biased in my answer. Clane in County Kildare is one of the towns we are working with. We feel it is a model that does two things. Around the world when we looked at various autism-friendly towns much of the time it was a statement of intent. We felt it had to mean something tangible and it needed to be transparent. We created a framework for a town to follow to reach the standard. It has worked incredibly well. The supports help people in the town on a day to day basis. They are also a driver for tourism. The main thing is that from a very young age autistic people are told the community where they are growing up wants to meet them half way. This can have a real impact from a self-esteem point of view.

We were delighted to be in Malta in 2016 when its legislation was published on world autism day. It is a great example of the importance of consultation. The legislation that became the autism empowerment Act was introduced in the Maltese Parliament as an autism spectrum disorder Bill. Everybody worked very closely with autistic people to develop the oversight council that Malta now has. It is seen as an example of best practice.

The only other comment I will make on best practice is if we want to look at European examples something that is very clear is that we are the only State on these islands that does not have an autism Act. Northern Ireland, Scotland, England and Wales do. This should tell us the direction we should go in this regard.

I thank Mr. Harris. I was listening to him on the way in. Much of what he said in his opening statement rang true particularly that the public is far ahead of the State when it comes to autism. We can see all of the groups that exist. In my area there is the Dublin 12 Campaign 4 Autism Inclusion and Involve Autism. I know Mr. Harris is very aware of these groups. The work they do is phenomenal.

I have heard anecdotally that the NCSE has directed parents to advocacy groups when simple questions are being asked. This is very unfair. These groups have taken on a huge burden. It is practically a full-time job for the main advocates in the groups. They are not getting any support from the State. Perhaps the committee might look at supporting the groups administratively or giving something back to them. Many of those involved stay at home to look after children and run the organisations at the same time. It is amazing. They have to be thanked. I congratulate AsIAm, which is doing unbelievable work. AsIAm and all of the other organisations must be thanked. They are filling a gap the State should be filling. As Mr. Harris said, there are no roadmaps. There is no plan. People are given a diagnosis but not told what will happen next. Parents go to these groups to look for direction and support. This should be provided by the State. It should be very clear what will happen after a diagnosis with regard to what school the children will go to and the opportunities they will then have to go to college or work.

The committee should consider as a long-term goal the parents of children who need high levels of support. Probably on a daily basis many parents of children with autism who require high levels of support ask themselves what will happen when they pass away and who will mind the children when they are not around. We have to have a proper discussion on this. We want to make sure that children have meaningful lives and get the proper support. We are afraid to go down this road and answer the question. Perhaps there is someone the committee can bring in to discuss it. This is not just with regard to children with autism. Parents of children with any disability face this tough and upsetting struggle. It is unfair not to have a discussion until someone passes away. It should be open. What do we do for children with disabilities who require high levels of support when their parents pass away? Do they just go into the local county home? I do not know. I have no idea what happens. It is a real question people have and they deserve to know what the answer is and what supports will be there for the child. The committee needs to step up and ensure there is a pathway and framework for supports for children.

Many local employment schemes are closing down, as was mentioned earlier. The local employment service in Bluebell, which offered the employability scheme, closed down. Many people contacted me about it. For whatever reason it is not able to reopen. It is not prepared to retender, for its own justifiable reasons. We are losing a huge resource that supported people with disabilities to get employment. We need to be able to pull it back. Many services for people have already fallen away because of what is happening with the local employment service. It is regrettable. I thank Mr. Harris and I hope we all have an opportunity to attend the conference. It is very exciting and I wish Mr. Harris the best of luck with planning it.

Mr. Adam Harris

I thank the Senator. I agree there are strong local groups throughout the country. The Dublin 12 autism support group with Helen and MJ and Involve Autism with Miriam are two examples of the incredible work being done. Both of these groups in their respective areas have single-handedly changed the narrative on the availability of special classes and school places through their hard work. We owe them a huge amount of gratitude and support. These local groups play a vital role that an organisation such as AsIAm cannot necessarily do. My mother said that when I was younger the most useful thing to do was to speak to the parent of the child in the locality who was two or three years older to find out how they overcame certain obstacles and get local intelligence on who to speak to and what a school was really like. Supporting initiatives such as this should be part of an autism strategy. I touched on this in the opening statement. Much more targeted funding and support need to be available for these activities. In many respects they are full-time jobs and full-time undertakings.

I completely agree with Senator on the point she raised about the death of parents. It is something that comes up more and more. It is very difficult because the parent groups that have been established are often more geared towards the early stage of life. Parents do not often feel at home with this issue and it is often the same with the local autism groups. There is a need for more targeted support.

The same is true with regard to a tangential issue, which is ageing and autism. We speak about a population and we focus on the very young. We have a cohort of people who are growing older and there are many challenges that go with this. Other jurisdictions are only beginning to look at this. It is something we should have on our radar. The issues regarding ageing and death are particularly relevant given the assisted decision-making Act. It will bring in a lot of changes and we will need to support families and individuals with understanding it. Our concern at present is that too often the transition to adult services, such as residential care, happens when someone dies or only when a crisis happens. Autistic people need certainty and predictability. It would be far more helpful if it were done in a structured way much earlier. It would be better for everybody.

With regard to the local employment service it is clear we need more supports in this area and not fewer. It is vital that something is done.

I agree with Mr. Harris's comments. There is a huge number of groups in every county. Parents are coming together because of a lack of support. They do a huge amount of work on behalf of all families and children. I agree they should have some sort of support.

In recent weeks, a group of parents in my area fundraised over €20,000. Funding to support the special school to help the kids is not available through the HSE. It is a problem. Parents are taking action to bring in services that are lacking in the area. It is important that some sort of support mechanism is put in place. I hope that the work of this committee and the proposals we make will result in the provision of support for all of life. That is important for all parents.

I welcome Mr. Harris. I am sure we will be seeing a lot more of him in the next nine months. He mentioned that we need to be radical in our approach. I fully agree. The word "radical" is often thrown around in political parlance. I have been a Deputy for two and a half years and I can say that, in general, we are far from radical as a body politic. I am not pointing the finger at anyone in particular.

I hate to localise the issue, but I am familiar with the situation in County Cork. Credit is due to the Taoiseach for his intervention last year in Carrigaline, where, against the clock, we got a special school up and running. The process was managed in such a haphazard way that it was obvious that planning and forward thinking was completely absent, to put it mildly. Were it not for political intervention, we would still be talking about a special school for County Cork. Thankfully, there is another set to be delivered in Rochestown. As I said, there seemed to be no joined-up thinking in the context of the process of delivering the special school in Carrigaline. It was reactive, and far from radical.

We can also see the reactive approach in the emergency legislation that is going through the Dáil and Seanad. The issue has been spoken about for quite a while, yet here we are in the last week of term trying to get the legislation, as welcome as it is, passed. My experience as a Deputy in the last two and a half years has shown me that there is no radicalism here. I just see the machinery of State moving very slowly. However, I hope that more that anything, the work of this committee can highlight how we need to be radical. That is where we need people like Mr. Harris to help point us in the right direction.

I have a question for Mr. Harris on housing. This is an issue I have worked on with Cork City Council and Cork County Council. Some local authorities are better than others in dealing with individual circumstances, whether they involve autism, disability, an elderly person or whatever. To Mr. Harris's knowledge, are there any local authorities that have housing policies which, in the context of housing allocation, reflect the needs of autistic people? Obviously, many people will seek to retrofit houses - and will apply for grants for same - for their children or themselves as time goes by.

Mr. Harris referred to the fact that 80% of autistic people are not working. I have no doubt that a large proportion of them could work if they were given the opportunity to do so. What specific areas should we be targeting to bring people into the workforce and give them the opportunity to contribute to society? I ask Mr. Harris to answer those two questions initially. If there is time, I will raise the issue of assessments of need.

Mr. Adam Harris

Housing is an area in respect of which we have seen a huge spike in demand and growing concern since the start of the pandemic. We have gone from receiving correspondence on the matter relatively occasionally to receiving it consistently from families that are in quite significant difficulty. When we consider how important the sensory needs of autistic people are, we see that very often they are misunderstood and overlooked. Meeting the sensory needs of an autistic person is as serious as a physical accessibility issue may be for somebody with a different disability. That is not always understood or accepted. During the pandemic, our homes became classrooms, kitchens and social settings all in one place. Many families found that very challenging, particularly those with more than one autistic family member who could have very different sensory needs. Sharing one small space was very challenging for them. What we have found across the country is that a very different approach is taken from county to county. In advocacy work we have done on behalf of community members in some local authority areas, it has been accepted that if a person is not in the right environment, their condition could become progressive. If their needs are not being met, the person will become increasingly distressed and less self-regulated, for example. Some local authorities have accepted that. Others have not. I can follow up with the committee to provide more information on where we have had good experiences. I will talk to the team and revert with that information. It is clear that we need to have a national policy that recognises that autistic people have specific housing needs that should be catered and provided for in each area.

On the issue of employment, it is important to state that I do not think there are specific sectors that should be targeted as such. In fact, there is already a bit of stereotyping that finance, IT are pharmaceuticals are sectors that attract autistic people. It is true that there are autistic people with those skill sets and there are initiatives by some big companies around hiring autistic talent, but, actually, it is about matching the skills of an autistic person to a particular job. In order for us to be able to do that, we need to look at two areas. We need to have a much broader range of employers engaging in the process. For example, we know that there are lot of autistic people with qualifications and interest in the creative arts, such as animation. However, there are not necessarily employment opportunities for autistic people in those sectors. It is really about matching the people to their interests. If we do that, they will thrive. If there is another area of the economy that is especially important, it is the SME sector. Many members of the autistic community cannot travel long distances and need to work locally. We must ensure that there are not just opportunities in Dublin and Cork, but that the SME sector has the confidence and support to hire people in rural towns as well.

The Minister of State, Deputy Rabbitte, appeared before the committee earlier. We discussed recruitment for the provision of therapies and assessments of needs. We have spoken about how we can address that. There are people moving from the public sector into the private sector. There is undoubtedly a shortfall in the number of qualified therapists in a whole raft of different areas. What does AsIAm advocate in terms of how we can recruit the therapists we need? Thinking of my local area, around one in four posts remains unfilled. It has been like that since 2016 or 2017. In that period, the situation has not improved; it is proving more challenging to retain staff now. I ask Mr. Harris to address that issue. If he has time, I ask him to comment on the summer programme. I cannot expect Mr. Harris to be an expert in everything. It is great when we see headline figures such as the provision of €40 million for the programme. Like others, however, in my heart and soul I know that we will be lucky to draw down one third of that based on what last year was like. How do we maximise those opportunities? Should we be expanding the programme out to beyond teachers? Should care workers and different therapists in training be recruited? How does Mr. Harris see those vacancies in the summer programme being filled?

Mr. Adam Harris

On the recruitment issue, it is clear that there is a cultural aspect involved. It is also clear that the teams that are facing recruitment crises are often those that are under-resourced. In many respects, the clinician becomes the public face of a failing system. That has a huge impact on people's willingness to work there, particularly in the long term.

Another issue, as I understand it, is that there are significant entry-level opportunities, but we are not offering people the pathways that are so critical to ensuring that they remain in the system, particularly as they build up experience. That is where we are losing people. Another area that is important here concerns exposing people to disability when they are still in training. When many people are training, for example, as physiotherapists, they are not actually seeing disability as an attractive place to work or as a place with significant pathways. That definitely needs to be improved. Not only do we need to train more people, but we need to expose people to more opportunities to work in disability while they are studying so that they build up an interest in the area. It is clear that the summer programme could play a role in that. Strategically, it would make a lot of sense to kill two birds with one stone.

Ultimately, we must ensure that in trying to fix this issue we do not drive funding into the private sector as well. That is always a tension. We are increasingly seeing people leave the public sector to work in the private sector. The public sector then begins to collapse further.

A range of measures are required. It is very clearly about pathways, but it is about culture and morale as well. Again, that comes back to resourcing.

On the issue of the summer programme, I am glad the Deputy raised this because it is very important. We all know how difficult it is to get funding for disability. The idea that any of that money would be surrendered back to the Department of Finance is gut-wrenching. There need to be creative ways to look at how that money can get to the end user if they are not able to access the summer programme. If there is any sort of surplus, which I think there will be at the end of the summer – we already raised this matter with the Department – that should be looked at in terms of whether there can be a transition back-to-school programme that could be developed to support people who might find starting in September especially difficult because they have gone two or three months without any support. That is important as well.

We welcome the expansion of the summer programme. It should include as many children as possible. However, there has to be a recognition that those with the highest level of need and those in special schools have been left behind. In next year’s response, there needs to be a targeted approach to make sure that those children are able to access the support they need. The only way of doing that is moving it outside just the Department of Education and bringing in therapy and HSE staff as well.

Like many of the other Deputies, I find I am learning so much. I thank Mr. Harris and his organisation for their role in that. Obviously, I deal with families all the time. Half the time I am just heartbroken and left wondering what solutions can be found. That is one aspect.

This is our second or third meeting. From reading Mr. Harris’s documentation, I learned how I need to reorient my thinking and expand it to be, literally, more inclusive. That makes me realise how big a challenge this is for all of society. I would think, as we all do, that we are fairly broad-minded and open. However, when you do not have personal experience of something or you do not see it in your immediate family, your experience can be quite limited. I see the huge challenge that presents for society.

As I said, that is where we are starting from. The committee will be in place for a period of nine months. Many Deputies have referred to that, and Mr. Harris talked about the wins that we could hope to achieve during that time. Also, we have to look at fundamental policy change. In regard to the wins, I raised employment earlier with the Minister of State. Mr. Harris spoke about it as well. Can he elaborate a little on practical supports in employment settings? Has he worked with any employer organisations? What response did he get? What progress has been made? What is his view on the WALK programme and how could we give it greater support?

On legislative change, is there anything at EU level? There is a lot of good legislation. We have the disability strategy, but that is a strategy; it is not actual legislation. Of course, we have anti-discrimination legislation and the convention, but, again, it is a convention. Does Mr. Harris see anything in regard to concrete legislation that would be useful, either at EU level or here, particularly as there is nothing to prevent us from going further? While the legislation in place is supportive, it is not sufficient to move us that bit further that we need to go.

Mr. Harris is absolutely right that we need to grasp some of the nettles. If a certain percentage of children with autism are in mainstream schools, we think that is inclusion just because they are physically present. At a much more basic level, however, it means that the whole system, including teachers, students, physical space, school policies and boards of management, is, if you like, set up in such a way that inclusion actually means that the space - by space I mean everything - is not just designed for an autistic child, but it is designed for all, which includes autistic children. We talk about universal design meaning the physical space. However, we have to broaden our thinking on that. What are Mr. Harris’s thoughts on the matter?

I ask Mr. Harris to grasp a very difficult nettle. I was a teacher for many years. Mr. Harris wrote about discipline policies in his submission. Can he talk to us about that, please?

Mr. Adam Harris

To start with the employment space, this is something our organisation has been doing quite a lot of work on. Two years ago, we set up a new partnership with, the country’s main employment website. We published a report, which I can send a copy of to the committee, called Autism in the Workplace. In that report, we looked at two things. We surveyed members of our community about their experience looking for work and then we surveyed employers about their openness and attitude in this area. If I was to sum it up broadly, employers are interested in this and want to do something, but are terrified of getting it wrong. That is the main barrier. There is the sense that employers would do something but they do not know what they should do or do not even know where the barriers are. Contrasted with the experience of autistic people, there is a reluctance to even share that they are on the spectrum if they are going for job interviews. Some 75% said they would not tell their employer. There is an awful lot of culture work that will need to be done there to shift it. Sometimes within the workplace, we find it is slightly like a chicken-and-egg situation because, on the one hand, there needs to be more people standing up and saying, “I am autistic and I work here”, which gives other people confidence. However, at the same time, it is very hard to be the first person to do that.

Last year, AsIAm published a toolkit for employers - the Same Chance Toolkit - with That looks at all of the measures an employer can take from recruitment through to interview, induction and onboarding. It is very important to note that there is a piece of work just about demystifying, because the sorts of accommodations that our community might need are often very minor. It may be, for example, a person wanting to work remotely three days a week because the bus takes so much out of the person in the morning. It might be somebody, for example, needs to wear a certain item of clothing because other clothing may cause irritation. For example, perhaps something like what I am wearing might not be comfortable for every autistic person. It might mean that a person just needs to sit in a particular part of the office where it is less noisy. Often, the accommodations can cost very little. It is about educating everyone in the workplace to realise it not the way they used to do it, but that is actually okay. Education is key in that regard.

We recently set up a community of practice with some of the leading employers in the country. We will be rolling out training with them over the course of the next number of months with a view to them beginning to employ people over the coming year. That is a project we will keep the committee updated on.

On legislation, I will raise two things that I do not have an answer on today but that may be food for thought for the committee. In many European countries, there are quotas in the private sector in respect of this area. There are no such quotas in Ireland. There are pros and cons to quotas, and they do not always mean true inclusion. At the same time, however, there comes a point where one has to ask whether, if the rate of progress is too slow, we need to think more radically. Where the State could have an instant impact and already does some work in this area, is in procurement. We have had some engagement with employers where they are looking at this area because they are seeing it is impacting procurement in public contracts. Those are two areas at both an EU and national level where more could possibly be done.

On universal design, a piece of work that might interest the committee is the ASPECTSS framework. One of the challenges with design in autism is it is not like physical access where it can be codified, rather, it is more of a framework because people are so different. That framework was developed by an Egyptian architect called Dr. Magda Mustafa. We find it is a very good basis for looking at design. Many of our school buildings, even our new ones, are not considering autistic people. They are more physically accessible but not necessarily as autism friendly.

High ceilings, common-purpose areas, and all of those sorts of spaces can cause challenges.

Discipline is a huge issue. If an autistic person goes to school and becomes really overwhelmed, begins to feel really distressed in the classroom and experiences a meltdown, a meltdown is not something that he or she has any control over. The brain has actually reached such a point that it can no longer communicate or regulate all of the information it is getting. Currently, if a person has a meltdown in the classroom and during that hour or 90 minutes throws a chair, lies on the floor or becomes distressed, the situation will very often be addressed through a code of behaviour that is the same policy that deals with the student who smokes behind the shed out the back. It does not seem remotely fair that those two things would be treated in the same way. There are times when the school placement breaks down or the person is not in the right school but it is harrowing that how we address such situations is by suspending and expelling people and by using terms like "assault", when in many cases the people being referred to would not be held criminally liable in any court in the State. They are actually treated nearly like a criminal by the education system. There is a real need to change the code of behaviour.

Mr. Harris talked about the "radical" word. I do not want to overemphasise it but he said that "A radical plan is needed and excessive waiting lists must end to ensure appropriate, regulated supports are in place." Many of us here are very quick to identify the problems. We know the problems because people come to us every week in our clinics. What does Mr. Harris envisage specifically in that radical plan to tackle those excessive waiting lists to ensure people get appropriate access to the interventions they require?

Mr. Adam Harris

There is a lot of work to be done here. As with any complex issue, it will require more than one intervention to address it. We need to be very clear that we are in a major crisis now arising from the recent judgment around the assessments of need. Last year the HSE struggled to do 6,000 assessments of need. Next year, as a result of the legislation, they may have to do 29,000 assessments of need. The entire range of support that is available will go purely on that diagnostic piece and will not be available for therapy. This is hugely worrying.

One aspect that needs to be looked at urgently is attracting therapists from overseas to come to Ireland. Obviously, this relates to pay and conditions but currently occupational therapy and speech and language therapy are not on the list of urgently needed professions. People cannot bring their families here. This is a very quick thing we could change that would have an impact. We will have to look at a range of measures such as giving people a budget to spend within the private sector, enabling people to travel abroad, and access to telehealth. The challenge is that if we provide those solutions they need to be very time-bound. There is a risk the system will worsen because the whole system will shift towards a private model.

I wish to pick up on a point that Senator Wall also brought up, but which I did not get to. We really need to look at the cost of disability. Dr. Áine Roddy of NUI Galway has published a paper around the cost of autism. It found that, on average, families are spending €28,000 more per year than they would if they were raising a child who is not on the autism spectrum. This mainly comes about because one parent must give up work or go part-time and any bit of disposable income ends up going on private therapies. The State has to do something to recognise this. Everybody knows that it is going to take time to address the waiting lists but people need to be resourced and provided for in the interim, particularly when we are faced with a cost-of-living crisis. Our pre-budget submission will focus on this.

I came across something here some weeks ago relating to early intervention classes. I believe there are 137 early intervention classes nationwide. It is clear that the majority of children who avail of those classes obviously would require a diagnosis. The difficulty is that if a child is three, four, five or six years of age, the chances are that he or she will not have received a diagnosis if he or she is on the public list. Those early intervention classes are therefore undeniably skewed towards people who can afford to pay for it. Does Mr. Harris see any solution to that other than possibly the State filling in and providing for it? The State should be doing it anyway but what is the solution to that?

Mr. Adam Harris

It is important to note that the HSE has an autism programme board. I am not sure if the committee is aware of it. It was set up a couple of years ago arising from a review of autism services that was carried out in 2017. The board is tasked with looking at two main areas of work. First, it is preparing to do a HSE awareness campaign about autism. That piece is coming. Second, there is a desire to develop a pathway protocol for autism assessment. This is looking at a tiered model of assessment through the public system. That pilot is going on at the minute in CHO 2, CHO 7 and CHO 9 and is running until next March. I specifically made the point that it is really important that this committee would get an opportunity to scrutinise the progress, or otherwise, that the board is making. I believe it will have some preliminary data towards the end of this year. It would definitely be worth the committee hearing about that progress. One model - which will not necessarily be the right model - is an example of where the system's thinking is that in that regard. Perhaps this answers the Deputy's question.

Following on from Deputy O'Sullivan's question, when we ask that question of the Minister and the NCSE, their answer is that they have the access and inclusion model, AIM, and it is amazing. However, this model is not suitable for a lot of families or for many students and schoolgoers with autism. I am glad that Mr. Harris gave the response he gave but what is his view on the AIM programme when it clearly is not suitable?

Mr. Adam Harris

This is really useful. I nearly missed that so I thank the Senator for asking me. AIM is a very good example of where a disability general approach does not always work for people with autism. Even getting this committee established was one of the big points that had to be driven home. People do not always grasp it. Because so many people with autism are going into preschool without a diagnosis, the reality is that the support required at level 7 is generally out of reach for our families even if it is sanctioned. As a result, AIM is an example of a lot that is positive, but with regard to parent satisfaction the parents who tend to be least satisfied or feel that it works least effectively are the parents of people with autism. We were very concerned with some of the speculation a number of months ago about the NCSE not opening more autism early intervention classes or moving to abolish them. We would not support such a measure. This is important because of course we want to move towards a more inclusive model but we are very clear that we cannot have a lost generation in the process. Until we have preschools that are fully resourced and meet the needs that exist, parents must have the option and it must be resourced. The other reality is that because there is not the required level of autism early intervention classes around the country, very often money is then going through the home tuition scheme to private providers. There is a need to scrutinise a little bit more the value for money in some of these areas. I think again of the 15,000 children who must travel outside of the community to go to school and the massive costs this is generating. By not putting in place the required support at a local level, I am not sure that we are not losing a lot of money for the system across the board.

Mr. Harris mentioned home tuition, which forces a lot of early schoolgoers into applied behavioural analysis, ABA, crèches, which are private crèches. Then there is debate on whether that is a good idea. The majority of adults with autism do not agree with any ABA therapies, yet ABA crèches are being offered, which the State is supporting. Maybe they are great; I do not know.

Mr. Adam Harris

As an organisation we have issued a statement around ABA. We are clear that it is not something we would be supportive of. We would like to see families being able to get the support they need through the mainstream education system, be that through special schools, special classes or mainstream classes.

I thank Senator Ardagh. Mr. Harris is an excellent advocate for people and families with autism. I want this on the record because it is important that wider society has a better understanding of what autism actually is. That this committee has been set up has brought it a little bit more into the public domain. There is more discussion about it in the media and around special education, special schools and so on.

It is important that this committee was set up. Like all members, I am hopeful that the proposals we make as a committee will feed into a strategy that will make a lot of positive changes to the lives and families of people with autism.

Mr. Harris has set us a challenge. Deputy O'Sullivan mentioned that the conference took place in 2005. Mr. Harris has asked the Government and the committee where Ireland will be in 2025. Many European countries are far ahead of us. The question is whether we are climbing the ladder and will overtake them. That is what we need to do. Mr. Harris and I have spoken at length about the model followed in Malta. Although it is a small Mediterranean country, it is many years ahead of us with its empowerment Act to make sure whole-of-life supports are available for people.

Through the clerk, we have made contact with the Ceann Comhairle and the Cathaoirleach with regard to making Leinster House and its grounds autism-friendly. I would like to see that in place for September when families come in here. It is important that we set out our stall about what we are going to do. Perhaps the approach could be rolled out to every single local authority and every public building across the country. That is the challenge we need to set for all local authorities across Ireland, the OPW and all public buildings. We need buildings to be autism-friendly.

Mr. Harris has commented on the summer provision. The issue has been highlighted at our meetings in recent weeks. I agree with Senator Wall's point about schools being clustered together so that at least one school in a geographic area or town is providing the service. As a committee, we must be strong on the point that it is not acceptable for a special school not to have summer provision. We must expand the range of staff eligible to work in the summer provision to include those working in the ECCE system to make sure we have enough staff. We do not want to see advertisements for staff who do not have the necessary qualifications. I know of one school that already has its 2023 yearly plan but does not intend to include summer provision. That is not acceptable. A clear signal must go out that every single school should provide it in summer 2023.

The figures on employment are very stark. Some 80% to 85% are underemployed or unemployed. That is the reason I think it is important to break down the barriers and change policy regarding employment. If more people had a better understanding of autism, it would be a help. When people do not understand, there can be a fear attached to employing a person with autism. In many respects, they are more than able for jobs. It is more a question of wider society knowing about and understanding autism. That will be a help.

I have spoken to local authorities on this issue. In Waterford, there are hidden disability car parking spaces. Every local authority should take this excellent idea on board. Such parking spaces should also be provided in car parks attached to public buildings.

Hospitals should have them.

They need to be available in the car parks of all public buildings throughout the country.

Mr. Harris touched on teacher training. Did he have any discussions with the Department in regard to the model of training to give teachers more experience? I had a discussion with someone the other day who was going to work in a special class. Such a person should have to work in summer provision prior to going into work in such a class. We have heard stories about teachers arriving to teach a special class who have no experience at all in the area. That is not acceptable. Something must be put in place for people to get experience.

I am a firm believer in the school inclusion model. That is what we need to work towards, to ensure it is rolled out throughout the country. Speech and language therapy should be provided to children on a weekly basis. The Minister of State, Deputy Rabbitte, indicated that it could be part of the summer provision. People in third or fourth year of an occupational therapy course or a speech and language therapy course could be employed for the summer so that children would get the service through the summer as well. What are Mr. Harris's views on teacher training?

Mr. Adam Harris

Teacher training is a source of enormous frustration for everybody. This point was raised when the representatives of the teachers' unions were before the committee. There is agreement across the board about how important it is. When we come to teacher training and autism, it is yet another example of the point I made a moment ago to Senator Ardagh that there has been a reluctance to grasp the nettle and recognise that teachers of autistic people need very specific training. Sometimes there is an adage used in education that good teaching is good teaching, if one likes, but what people need to understand is that communicating and interacting with an autistic person for a neurotypical teacher is often counter-intuitive. A very simple thing is how a teacher knows a student is listening. He or she might check if the student is making eye contact. An autistic student might need to look away in order to hear what the teacher is saying. There is such a counter-intuitive way of communicating that the teacher might need to learn about. We are concerned that it should be part of initial teacher education. Whatever about having a transition time, we are seeing teachers come out of college now who tell us that they had a couple of lectures on autism and that was really it.

I encourage the committee to consider in the coming period the fact that Mary Immaculate College, at its second campus in Thurles, has a compulsory module in autism in the final year of the degree. It is the only teacher training college that has done that. There is a success story there that should be rolled out. Dr. Finn Ó Murchú is the principal there and he has been leading the work. That is something to look at as a model.

What is also important is the ongoing development of the teacher. AsIAm has developed an autism-friendly schools programme that we had evaluated last year. Some 350 schools came to us and they completed a tool that shows them their areas of strength and their areas of development. They have online training on an introductory level that every teacher in the school can do. Then they nominate one mainstream and one special education teacher to come to three CPD days over the course of the year, where they access master classes and meet other schools. It is a real community of practice. That is something that we would like to scale and expand, but at the moment we are operating at a loss because nobody is providing something similar. We need funding at different levels, but initial teacher education should have a compulsory component around autism. The module in Mary Immaculate College in Thurles is definitely something that the committee should consider looking at further.

I thank Mr. Harris for his comments. He is an excellent advocate. He has been very thought-provoking. He has set us a challenge and as a committee we are willing to take it up. Does he have any final comments before we conclude the meeting?

Mr. Adam Harris

I thank the committee for having us. It is great news to hear about the progress that is being made about accessibility measures in Leinster House. That is certainly something we can assist with in the summer prior to the committee hearing from families later on.

We will follow up with a couple of pieces that I undertook to send on to the committee. We will continue to be available as a resource throughout the nine months, should the committee need any further input or guidance on specific issues.

There was one question that I did not get to, which related to the idea of regional centres for the summer programme. We need to be as flexible as possible to get the maximum number of children through the programme. What is unknown at the moment is that a school can welcome a child from another school if it has capacity. We have seen some good local examples, but the Department should be promoting that more.

The one point I would make is that it will not work for every child. For some children with the most complex needs, you really need staff and a setting you are familiar with. I thank the committee again.

The joint committee adjourned at 2.20 p.m. until 12 noon on Thursday, 14 July 2022.