Micheál Carrigy (Fine Gael)
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The third item on the agenda is the continuation of our consideration of autism policy and we will have two sessions. Session A will be with parents' representatives and session B will be with academics. I welcome our witnesses to the first session today. We are joined by Ms Noeleen Smith and Ms Trina Boylan from Cavan Autism Parents Support, CAPS; Ms Aisling Byrne of Dedicated Children's Advocacy, DCA, Warriors; and Ms Miriam Kenny and Mr. Alan Power of Involve Autism Dublin 6. This is the second public meeting at which the committee has the opportunity to meet with parents' advocacy groups to discuss autism policy, and I am looking forward to continuing that discussion with today's witnesses. The provision of autism services and supports is a subject that is often raised with this committee. However, it is of special importance that this forum be used to give a platform to parents who advocate tirelessly and have done so for a number of years on behalf of autistic children. In our last public meeting, we heard about the provision of assessments, supports and therapies from representatives of the HSE. The committee is pleased to hear directly from today's witnesses, who represent those who need to access services and supports provided by the State for autistic people, or anything else that they may feel is relevant. Before we hear from our witnesses I propose that we publish their opening statements on our committee's website. Is that agreed? Agreed.

I call Ms Noeleen Smith and Ms Trina Boylan from CAPS to make their opening statement.

Ms Noeleen Smith:

I thank the committee for inviting us here today. CAPS was established in 2011. It was set up by parents of autistic children who saw a gap in services. In the beginning there were nine members registered with CAPS. Throughout the years it has continued to grow and expand. Due to the yearly rise in members and increased workload, it became a company limited by guarantee in 2018. Today, there are 96 members from 85 families registered with CAPS, and ten of these families registered have multiple autistic children and adults. Every child has a right to survival and development. The Government acknowledged this when it signed the United Nations Convention on the Rights of the Child. However, 20 years since the son of Bernie Nelson, founder of CAPS, was diagnosed with autism, our children are still without vital services. They are left surviving but developmentally living nowhere near their potential. How sad is that? How utterly sad, and for us as parents of these kids, how frustrating and upsetting that they are not where they could be, deserve to be and have the right to be. There are no services. Every child has the right to an education. Education is vital for us all to reach our full potential but without regular occupational and speech and language therapy, how can our children be comfortable in their classrooms? How can they learn how to cope with the overwhelming or indeed insufficient sensory stimuli at school? How can they learn how to communicate with their teachers and special needs assistants, SNAs, in order that they can concentrate better, understand better, regulate themselves better and ultimately, learn better? They cannot do it without these therapies, and we as parents have to look on, helplessly, as they struggle day in and day out.

Just last week, I had a meeting with Enable Ireland, looking for help. My eight-year-old daughter is suffering with meltdowns, kicking and bruising her legs and chest. She cannot communicate the problem and we are both left totally distraught and exhausted. Since she does not get occupational therapy or speech and language therapy, I wanted help. I wanted some respite in order that my husband and I could have a break. I got nothing. I was advised that because she is in an autism class in a mainstream school, she would not be eligible for respite. The respite service is only available to those in special schools. Even then, there is a three-year waiting list for respite in Cavan and Monaghan. It has gone too far. Enough is enough. There are three, four, and even five-year waiting lists for therapy, respite, assistant dogs and everything. It is just not good enough because, as we hear all too often, early intervention is key. In Cavan and Monaghan, the only saving grace that autism families have is CAPS. CAPS is a registered charity that provides a variety of supports to families in County Cavan and surrounding counties. Some of these services include the Saturday club, which is held weekly for the younger members of the group. Activities at the Saturday club include music therapy, arts and crafts and other activities such as games and sports. We have the computer club, which is held weekly on Friday evenings throughout the year for the older members of the group. We have seasonal camps, which are held during the school holidays at Easter, summer and Hallowe'en. These camps include trips to play centres, pet farms, trampoline parks, zoos, a chocolate factory and many more locations around the country. We have monthly social morning events on the first Tuesday of each month in the Teach Oscail family resource centre, County Cavan. These meetings are open to everyone, not only members of CAPS. We provide social outings, which include going to the cinema, bowling and restaurants. The aim of these outings is to improve social skills and integration. We also provide a range of workshops, training and therapy sessions as and when required. Previous services have included first aid, meditation, mindfulness, reflexology, parenting programmes, coaching and counselling. During all CAPS events, all members are accompanied by a volunteer carer. CAPS is very fortunate to have an amazing team of volunteer carers year on year. Our volunteers include students from transition year, TY, classes, colleges and those looking to give back to the community.

CAPS is constantly working on the planning, preparation and delivery of projects and initiatives to support its members, their families and volunteer carers. CAPS constructed a sensory garden that is located beside Cavan County Museum. This garden is wheelchair accessible and open to everyone. The aim of the project is to provide a safe environment where individuals of all ages with disabilities can visit and explore their senses without feeling overstimulated by them. The garden is also beneficial for parents, guardians, carers, siblings and others who do not have disabilities. In it, they also have a safe place to relax and unwind. This project was part funded by the Department of Rural and Community Development and Cavan County Council under the CLÁR scheme and municipal district funding. Safe and secure spaces like this are greatly lacking throughout the country. This is the only public sensory garden in the region to date. The CAPS sensory garden was officially opened on 28 April 2022 as part of our Together We Can All Make A Difference autism awareness campaign.

At CAPS we conduct almost all of our work on a fundraising basis, with little Government funding. We certainly would not be able to provide any of these camps or activities without the ongoing support we get from our fundraising events throughout the year and our volunteers. Groups like CAPS should be nationwide and should be State-funded via the HSE. This is because they provide the services that the HSE is failing to provide. The HSE should be providing effective access to quality occupational therapy and speech and language therapy. It should also provide therapists to regularly visit schools. In America, studies have been done on babies who have a higher chance of having autism because older siblings who have autism. These studies are enabling autism traits to be picked up as early as at eight weeks after birth. That is when early intervention with these children needs to start. We need such intervention.

We thank the committee for the opportunity to have our voice heard. We hope that it will take all our work to the next level and that it will work equally as hard, with the goal of having these much-needed supports and services for our autistic community provided and funded by the State. We, the parents, have been doing the Government's job but we should not have to do it.

Ms Aisling Byrne:

DCA Warriors provide support and assistance to more than 33,000 parents who have children with special needs and-or serious illness. I will address some of the main concerns that are raised by our members on a daily basis. The first issue relates to the assessment of children under the Disability Act 2005. It is difficult to overstate the importance of this assessment for parents. It identifies the needs of the child and sets out what services are required to address those needs. The assessment must be carried out without regard to the cost of or the capacity to provide any service identified in the assessment to meet the needs of the child. It sets out the gold standard of service requirements. This allows a family to identify and plan for the needs of the child.

The Disability Act 2005 has placed a legal requirement on the HSE to complete assessment reports within a strict timeframe, without any regard to resources. Put simply, the HSE is not entitled to say that it does not have the necessary resources to complete reports within the six-month time limit. It is unclear, therefore, why the HSE sees the six-month mandatory time

limit as an aspirational timeframe as opposed to a legal obligation. The question of resources does not apply because the Oireachtas has determined that the HSE must complete reports within six months, without any clause in respect of resources in the Act. The assessment of need process is extremely important to parents of children with suspected disabilities. The clear intention behind the legislation is that there should be a comprehensive assessment of a child's health and educational needs. Unfortunately, assessment reports are almost never completed within the six-month statutory time limit. The data shows that prior to the introduction of preliminary team assessments, 91% of reports were completed outside this time limit. In 2019, the average time to complete an assessment was 19.8 months.

The HSE stated that the preliminary team assessments, PTAs, were introduced to ensure a consistent approach to the applicants for assessment of need. A consistent approach to assessments is laudable but it was never clear why this consistent approach meant that assessments were going to be reduced to 90 minutes in duration. If the real objective was consistency of assessments, all that would have been required was that clinicians be directed to follow a certain procedure, in keeping with the legislation. In truth, it is clear that the PTA was a useful method of clearing a backlog and taking thousands of children from the assessment of need waiting lists to other waiting lists, such as those relating to children’s disability network teams or the early intervention and school-age disability teams. It is not coincidental that the assessment of need waiting list has statutory time limits while the other waiting lists do not. When DCA Warriors attended a meeting of the Joint Committee on Health in June 2018, we set out our grave concerns about the PTA process and how it was not in the interests of the child to have more screening processes as an assessment of need. The High Court struck down the PTA process last April, but only after thousands of children had been given this form of assessment. The HSE must now redo the assessments carried out under PTA. It is clear that most children unlucky enough to be assessed under PTA system have yet to receive proper assessment.

It is apparent from feedback we receive from parents that when they contact the HSE for advice on the assessment of need process they are being advised by HSE staff that they do not need to apply for assessments of need and that they will receive everything they need from children’s disability network teams. This is a worrying development. An assessment of

need report provides a family with a gold standard statutory report that is enforceable in the courts if necessary. Further, it guarantees a family that they will receive a service statement that mustbe reviewed on an annual basis. No other report provides such rights to the child. To direct parents away from an assessment of need report is in the interests of the HSE; it is not in the interests the child.

Health and education needs are inextricably linked for children with disabilities. This is clearly reflected in the Disability Act 2005, which requires a statement of the health and education needs. However, it is the experience of our members that assessment reports never include a report from the National Council for Special Education, NCSE, as required under the Disability Act. It is clear from the Court of Appeal decision in the case of C.M v. HSE from October 2021 that the HSE did not believe the NCSE had any role in the assessment of need reports completed for children. The court held that this was incorrect as a matter of law and that an assessment report should include the assistance from the NCSE, where appropriate. The question arises, what happens to the thousands of children who had reports completed without any educational input included in them? The HSE as been on notice for the past 12 months that these reports are defective and unlawful. It is my understanding that the HSE has not contacted any parent who had a defective report provided to them on the basis it did not include a statement of the educational needs.

Dr. Rita Honan, a clinical psychologist, has stated in expert evidence to the High Court that diagnosis is the gateway to treatment and the subsequent reduction of symptoms and increased cognitive and adaptive functioning for the majority of children on the autism spectrum. Every day this is delayed leads to missed learning opportunities. While this evidence was not contradicted at the time, it appears that the HSE does not now accept a diagnosis is needed for treatment or services. This ignores the fact that a diagnosis is generally a requirement in the context of special school placements.

It is nearly impossible to advise our members regarding the provision of services for their children because the system is so opaque. If a child is on a children's disability network team list, it is not clear when they will receive speech and language therapy or occupational therapy or get access to a psychologist. Even if a date is provided, it is not clear what level of service will be provided, that is, will they receive a block of sessions and, if so, how many? What happens after they receive a block of therapy? How long will they have to wait until the next block of services?

DCA Warriors often hear complaints from clinicians that they spend too much time assessing children and not enough time providing services. Respectfully, this misses the point. The children who apply for assessments need them. Those assessments need to be done properly. After children's needs are identified, they need to be given appropriate services in a timely manner. Assessments of need and the provision of timely services are not mutually exclusive.

It is important to note that the HSE has the necessary resources to meet all of its obligations under the Disability Act 2005 and to provide the necessary services to children with disabilities in a timely manner. Almost €1 of every €3 collected by the State in taxation, approximately €68 billion annually, is spent by the HSE. Put another way, the argument is not one of insufficient resources to discharge the duty but of a preference for using the money for other purposes.

The Oireachtas took the highly unusual step of directing the HSE to allocate resources to complete assessments within six months because it was acutely aware that early intervention was the key to the long-term success of the children who needed the assessments. The HSE knows this too. It has chosen to allocate the necessary resources elsewhere.

Ms Miriam Kenny:

I am the chairperson of Involve Autism, which is a voluntary, parent-led support and advocacy group based in D6 and D6W in south Dublin. I am joined today by our deputy chair, Alan Power. We are both parents of autistic children. We thank the committee and Chair for inviting Involve Autism to speak.

Involve Autism was founded in 2018 by a small group of parents of autistic children who came together to campaign for appropriate school placements for their children in D6, D6W and the surrounding areas of D16, D14 and D18. We now have a large membership and are a voice for autism in our local community. Our three pillars are support, advocacy and inclusion. We hold bimonthly support meetings and social activities for our children, and are developing partnerships in the community with groups, clubs, etc., to promote inclusion. We frequently hear at our support meetings about the difficulties parents experience accessing an appropriate education for their autistic child, plus their fight in relation to accessing services and supports. We also provide support through our social media platforms and are contacted frequently.

The difficulties experienced by parents is a source of great stress, anguish and anxiety that could be lessened if the system provided the support required to meet our children’s and families’ needs. Involve Autism has found over the past four years that our parents receive little support from the bodies that should be providing it and we are filling the gap in a voluntary capacity. Our advocacy has focused mainly on addressing the lack of autism classes in our area. We have also advocated strongly regarding the lack of access to services for our children.

I am passionate about health and education as I have worked in both sectors. Today we will be focusing on our advocacy in relation to the education of our autistic children. When we started our campaign, only one primary school had an autism class in our area and there was no autism class at second level for a large schoolgoing population. We were in fact the worst served area in the country. We were advised at the time that there was no issue in south Dublin. We have fantastic schools both at primary and second level in D6 and D6W. We have non-fee-paying and fee-paying schools and schools with different patrons and management bodies.

There are autistic children who are well supported in the mainstream setting, but some of our children, despite this support, struggle in mainstream education. There is a cohort of children who need the extra support of an autism class. Herein lies the problem. Our children who needed an autism class were unable to attend schools in the local community with their siblings and peers. They spent their days being bused past our schools. This appeared to be an acceptable practice, with parents being advised to apply to schools in other areas that had autism classes, as there was in essence none in our area.

Parents trying to find an autism class for their child were handed a list of classes by the NCSE and were applying to up to 30 schools. Our freedom of information request in 2021 found that €72,000 is spent daily transporting children with additional needs across south Dublin at an annual cost of €11.6 million, demonstrating the lack of historic planning by the NCSE. We were determined to make meaningful change and embarked upon a significant campaign. We have led a data-driven campaign, presented our data to several key stakeholders and been relentless.

Our campaign continues to be a full-time job, but this is not our job and never should have been. Our campaign in part led to the commencement of the section 37A process in south Dublin in November 2019. We were hopeful following this that there would be significant change in our area, but this did not happen. Unfortunately, some of our well-established schools have been reluctant to set up classes. Newer schools being set up by Educate Together and DEIS schools nationally opened autism classes. We have worked tirelessly behind the scenes to get autism classes established and have had to be cognisant that we were in a vulnerable position as our own children were involved.

The experience of parents of neurotypical children as they search for a school placement is for the most part seamless. When you have an autistic child, however, it is a perilous and extremely stressful journey. Our parents recount stories about having little to no support and a lack of up-to-date information regarding autism classes from the NCSE. Parents are sent a list of classes and told to search for a class for their child, again with little support. In our parents’ experience, searching for an appropriate school placement includes ringing schools listed to be informed that, in many cases, autism classes are full, having to send up-to-date psychological reports to each school applied for, experiencing difficulties with enrolment policies, anxiously waiting to hear if a child has secured a place and having little to no choice, resulting in many children travelling unnecessarily long distances to school. There are lots of other points to be raised in relation to that.

Parents recount stories of difficulties experienced when their child is considered to be in an inappropriate setting and how some children are managed out of schools due to those schools not having appropriate supports for the child. This leaves parents in a stressful and vulnerable position, with no one to help them advocate for their child and navigate the education system. At all times we encourage our parents to work in partnership and collaboration with their schools and empower our parents so they have an awareness of their children’s rights with reference to education.

As part of our campaign, we held two large public meetings, one in February 2020 and one in April 2022, to highlight the issues that our families and families across south Dublin faced in securing an appropriate school placement for their autistic children. We invited all key stakeholders to both meetings to encourage collaborative change in the educational landscape in the area. We invited politicians to sign a pledge to ensure classes were set up properly and schools were fully supported in doing so. We made a formal complaint to the Ombudsman for Children and our concerns are referenced in the Plan for Places report. We want an excellent, quality education for our children in schools in our local community.

We recognise that there has been some progress in our area and that our voices have been heard but we have continued to campaign. Our partnership approach has led to a lot of progress and positive relationships being formed locally and nationally. D6 and D6W still have no early intervention class and a number of schools are without autism classes at primary and secondary level. We very much welcome the announcement by the Spiritan Education Trust in March, and we look forward to further change in the area.

At a recent morning support meeting, it was heartening to hear one parent describe how her child is now in a local autism class and what a huge difference that has made to her child’s life and her family’s life. We know from speaking to principals the difference it has made to the whole school community to have an autism class in their school. Our schools need to be fully supported by the NCSE, the Department of Education and the HSE. To the schools that have established autism classes, we thank you for your commitment to our children and for making such a difference to our children and our families’ lives.

We want the committee to look at the following points. As Donogh O'Malley stated: "We will be judged by future generations on what we did for the children of our time." We feel there needs to be accountability to ensure the needs of our autistic children are met by senior political leaders and senior managers in the Departments and Government agencies involved. We would like a review of the NCSE, especially its operational functions. We want data-driven strategic planning for our children and not an any-place-will-do approach. We want a strategic vision regarding to the education of autistic children that is cognisant of Article 24 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, and that is child-centred. We want recognition of all educational transition points, preschool, primary school, including junior primary and senior primary, secondary school and post primary school options; a comprehensive plan for the educational pathway for each child; a centralised application process for autism classes, like the Central Applications Office; meaningful support for families; support for schools and allocation of resources required, including wraparound supports; and an advocate to support parents when they have to navigate difficulties with their child’s school.

We would like an overhaul of the structure and governance of schools' boards of management; an oversight and standardisation of admissions policies for autism classes by the Department of Education to ensure they are non-discriminatory; and comprehensive tracking and support of autistic children who are unable to attend school due to inappropriate school placement, are finding it difficult to attend school or whose educational placement has broken down. We would like training for teachers, SNAs and all who support our children. We would like full implementation of the Education for Persons with Special Educational Needs, EPSEN, Act; to ensure an inclusive education, as per Article 24 of the UNCRPD; and a diversity and inclusion officer on the board of management of each school.

We need to look at international best practice models and at the integration of health and education, for example, the education health and care plan, as in the UK, looking at the child holistically and ensuring that wraparound supports are in place. We would like our parents to be met with compassion by all they interact with, particularly schools. Parents are the primary educators of their children and should be encouraged to work in partnership and collaboration with their child’s school. Most of all, we should be and need to be ambitious for our children in order for them to reach their potential and an excellent education is a key enabler of that. Our children will become adults and deserve a meaningful future. They need and deserve an education that is excellent and why should we expect any less?

We commend our Involve Autism parents plus the parental advocacy groups nationally who have raised their voices in an effort to instigate change.

I also thank all those who have supported Involve Autism Dublin 6 on our campaign to date. I will leave the committee with the following:

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Our children matter.

Micheál Carrigy (Fine Gael)
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We might reduce members' speaking time to four minutes for questions and answers. I was quite liberal with the statements from the three groups and we went well over time but it was important that all three groups were allowed to read their full statements as they were powerful statements. Well done to them.

We have received apologies from Deputy Carroll MacNeill.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the witnesses for coming in and sharing their stories. I commend the witnesses and the organisations they represent. I also commend the many other parents organisations that exist around the country on the work they do. As the witnesses have pointed out, they should not have to do that work. The parents' organisations are only there because the services and supports that should be available to them are not available. I want to especially welcome Ms Smith and Ms Boylan from my area of Cavan and I know the work CAPS has done for the past 20 years, which has been immense. As CAPS is the longest-formed organisation, has it seen any improvement in the provision of services and school places to meet the needs of autistic children in Cavan and elsewhere in its time? I know Bernie Nelson, the founder, is not here but I ask our guests about their experiences in that regard.

On early intervention, the HSE was with us last week and it told us that an assessment of need, AON, is not required, nor is a diagnosis. I do not understand that because an assessment of need outlines the services and supports that a child needs. In an ideal world a diagnosis would not be needed if there were sufficient places for all autistic children in our schools but there are not and schools are depending on the diagnosis in order to allocate the places because there are so few places. Also, it makes sense that they would know what the needs of the child are. I invite the witnesses to comment on that if they wish.

Ms Byrne mentioned the preliminary team assessments, PTAs, and warned against them and I know that other clinicians warned against them as well. We see the mess we are in because so many children have received this PTA and it is not a proper assessment and it has just put them on another waiting list. On schools, I read through Involve Autism Dublin 6's survey and unfortunately I have heard similar stories from other parents. That was shared with certain organisations but has it been shared it with the NCSE? If not, would it be worth sharing with it and if so, what comment or response has been received, if any? Some special education needs organisers, SENOs, I have worked with in the past are excellent while many others do not seem to understand their jobs. They do not liaise with the children and families who require their support and they almost seem to be the gatekeepers for the Department rather than supporting the family and the child in finding a school place and then in maintaining it.

Ms Noeleen Smith:

In regard to services it is worse than it was. I have two kids with autism, one is nine and one is ten, and I know from my experience that when they were first diagnosed there were services in place but for one reason or another they have not had services for the last five or six years.

On education, in Cavan we are okay at national school level. We spoke about the following matter on the way up in the car. A lot of funding is being put into autism classes at national school level but when it comes to secondary schools there is nothing in place. It is quite frightening to think about as my children are in second and fourth class. The boy in fourth class will be in mainstream education but I have no idea where my daughter in second class will go when she goes to secondary school. That is the case for a lot of parents in Cavan.

Ms Miriam Kenny:

We surveyed a core group of our parents recently to give them a parental voice today because there are only two of us here. One of the questions we put was if they had any suggestions on how the NCSE could do a better job. As a parent, the experience with the NCSE has not been one of receiving timely answers or support. One must look at the job description for a SENO and the reality of what is being executed. You can say it is because of funding and the NCSE will get extra funding and on the ground maybe people are overwhelmed, which has to be taken on board, but from our point of view you are left to your own devices. Nobody we have encountered in our group had much support from a SENO, if any. I am the local unpaid SENO and I have managed, quite successfully, to help people to get classes because I work in education so I understand that.

A lot of the time we know what is happening in the area when a SENO does not know. I will give an example of that. I was outside of my son's school and one child was looking for an autism class and their parents did not realise that one of the local schools down the road was opening a class. Why is that? My understanding of the SENO process is that the SENO is allocated to the school and not the child. Nobody is following the lifetime or pathway of the child from an educational perspective and that is concerning to me. It is pot luck as to who gives you that information. Our experience has been that there is no up-to-date information from the NCSE. We know a lot about data etc. and we have put that in place ourselves in our campaign but there is no live system for parents to see where there is a place and to determine what they will do.

One of the other critical things is that parents are applying and each time they are putting in their psychological reports and all their data. One must think about the general data protection regulation, GDPR, issues around that and the language that goes with it. There is no streamlined process. We have asked for that and I cannot see why we cannot start looking at a streamlined process for applications that reduces distress and allows people to know where the places will be. We must support the schools in doing that. It is about supporting the schools to be able to open classes but our parents do not have up-to-date information and I provide a lot of support locally because I happen to work in education.

Ms Aisling Byrne:

No AON basically means there is no legal ramification for the HSE. We are left in a state that the only legal way left for children is to have an AON done and DCA Warriors is against any watering down of that.

Mr. Alan Power:

I will follow on from what Ms Byrne is saying. I find it incredible that these decisions are made at the time of the PTA. All stakeholders were saying this was a bad idea and it went ahead anyway. We have to go back and understand who made the decision to go ahead with this. Where is the accountability around that? We will keep making the same wrong decisions if we do not examine that point and our children will suffer because of it. There needs to be accountability there.

Eileen Flynn (Independent)
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Last week we had the HSE and the Department before the committee and it was a daunting session. There was a sense of people giving pats on the back. I mean no disrespect about all the great work that is being done but then listening to parents and the experience on the ground it is different. I would encourage the Department to look over what people have said in the committee today. Last week it was trying to pull teeth to make the point that it is not working. The hurtful thing is they were defiant in saying that it is working.

We have little to no power. For me as someone from the Traveller community I would always say there should be nothing about us without us and I cannot speak on behalf of a mother with an autistic child because I am lucky enough not to have an autistic child. I do not want to take up those spaces and we only have so much power but I would encourage the Department to look and see that not one shoe fits all, that the service is not fit for purpose and to ask how we change it. Thankfully the committee has cross-party support and it is a positive committee.

Opportunities for autistic people to socialise outside of school have a huge impact and benefit on people's mental health.

What does school transport mean for these children? When I first joined this committee, there were discussions about opening special schools. While we need special schools, we also need special classes and supports to meet children where they are. Not every child who is autistic needs to attend a special school. I might have been unclear but this is my point. In Donegal, as I said at last week's meeting, some parents have to wake their children at 6 a.m. in order that they can travel from one end of the county to another. What impact does that have on a child's well-being and mental health?

Our guests spoke about the NCSE issuing new guidelines. If they have anything they might like to add on that, they might do so. I could ask many questions, but we have only one bite at the cherry with the recommendations that will go into the report, as I have been saying to every group who appears before the committee. The committee runs for only a few more weeks, so it is important to hear its recommendations to the Department and the HSE. What needs to be put in place for children, and for parents as well?

I apologise if I was ranting but I want to hear more views and recommendations from our guests as parents using the services, given some people might think it is all hunky-dory when it comes to the Department.

Ms Miriam Kenny:

For autistic children, depending on their needs, they can do very well within a mainstream setting as long as they are properly supported, which is important. There is a cohort of children who need the additional support of a special class, and my son was one of those children. He had been in a mainstream setting and was well supported but, unfortunately, he could not manage in that setting. There is also special school provision for children who need to be supported in a particular way.

Travelling a long distance to school is not an appropriate school placement, and we have spoken to people in education about this. Anxiety is caused to children when they are put into a taxi or onto a bus for the long term. We may hear from some parents that their child actually likes that journey but others will say otherwise. In Dublin traffic, the journey might not be far but it is long because of the nature of that. Moreover, parents often talk about the difficulty they have in getting transport and so on. Travelling long distances to school is not appropriate. When the rest of a community is walking by the parent to the local school and that parent and his or her child are not a part of the community, that is not an appropriate education for the child.

The anxiety issue is significant for a number of children. We have a comment from one parent we might read out.

Mr. Alan Power:

We surveyed a lot of our members and there are many such parents. One of them states that they were offered a place 26 km from their house. They refused the place and, thankfully, were able to have their son take an additional preschool year. They then got a place locally but in a different school from that of their older son, which meant their autistic son was seven years old starting junior infants, so his classmates are two years younger than him. He is now eight and is only in senior infants. The local school the parents' other son attends has 700 children but has consistently refused to open an autism class.

Ms Miriam Kenny:

This is our experience. There are large local schools and some of them have come forward but, unfortunately, others have not. It is not just in our area. There are areas similar to ours where, historically, the feeling is that our children do not attend their local schools because they attend somewhere else. That is the wrong way to say that and I do not mean to endorse it. A lot of the Delivering Equality of Opportunity in Schools, DEIS, schools have come forward, as have many of the Educate Together schools. There is beginning to be change. There are some fantastic parental advocacy groups and that is where the classes are now being opened because we have raised our voices. Why are we not planning for that under the NCSE and whoever else is responsible? I acknowledge the Minister of State has come forward but, at all times, the planning has not been there to say these children need to be in their local schools and their local community.

The benefit to the entire school community is substantial, not least through diversity and inclusion. Having a sensory room, for example, in a school that would not have had it otherwise benefits the entire school. Similarly, the benefits of having people who have experience working with children who are autistic or have additional educational needs - it is not all about autistic children - is profound and has a profound effect on the school. We have talked to principals about how it has changed the dynamic of their schools. We need to stop segregating our children and they need to be included, yet every child needs the support that is correct for him or her because every child is different, and it is important to say that.

Ms Noeleen Smith:

I might come in on the transport issue. I am going to contradict my earlier response. In County Cavan, we are doing well with autism classes in our primary schools, but we keep banging on about how early intervention is the key because that is the case with autism. Nevertheless, what we are lacking in Cavan and throughout the country is early intervention classes, which are vital. One child attends an early intervention school in Mullagh, about one hour away from their home town, and they have to take a bus there every day because it is the nearest option. The school is fantastic and the child has been doing really well, but we need a lot more of these services, especially for children at the age of three or four, before national school. Sending them off on a bus for an hour at three or four years of age is not right and is hard on the parent.

When it comes to national school, it is up to the parent of the autistic child to ring around schools looking for a place, which is not easy. Every autism class holds only six kids, so it is not easy to find a place and parents must ring around every school years before the child starts school. I know of one parent who visited a school and there was a little boy asleep at the time in a dark room. The principal told the parent that the child has a nap every day when he comes in because he gets up so early to travel to school. In my experience, and that of many parents to whom I have spoken, it seems to be all about funding and the quickest route to school, or using a bus that already passes the school and can pick up the child. In the case of one little girl who was starting school, Bus Éireann agreed that she would be picked up from her house and brought to school, but she would have to wait in the taxi because it was bringing some older kids to a secondary school and she would be too early for her school. She had to sit in the taxi with a man for 20 minutes before the day started. This was a child with autism sitting in the back of a taxi for 20 minutes. It seems it is all about money and not about the child's need.

Eileen Flynn (Independent)
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There are similar cases in Donegal where children have to travel the whole way around the county to get to school, and they can be travelling for up to two hours with all the stopping and so on. That is an issue we will have to look at. I thank our guests for their responses. I appreciate they are under great pressure.

Ms Miriam Kenny:

When my two and a half-year-old was diagnosed, I was told to put my precious only child in a taxi, while every other child was attending the local Montessori school or whatever. One of our parent members stated that with regard to early intervention, they had applied to 17 early intervention school classes within Dublin. They had to send 17 sets of forms and 17 copies of the child’s diagnosis, and 16 rejections were received. They said it should not be so difficult to access the supports the child so badly needs, which he is entitled to, and that there is no one to assist or advise except for other parents who have been through the same processes.

There should be an awareness that international reports show the long-term cost to autistic people in adulthood and the cost to the State. We are not investing in or supporting these children and their families at an early stage, and our children are going to be much older and are going to be adults for a lot longer than they are going to be children. This is the opportunity to address the issues.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I thank our guests for attending and for their advocacy, not only for families with autism but also to assist us as politicians.

As a member of a Government party, I note that we are regularly told we are now spending a quarter of the education budget on special education and that money is not the problem. However, when we listen to people such as the witnesses, it is clear that it is not working. We are either wasting an awful lot of money or not listening so it is very important that the witnesses are here. I will echo Senator Flynn in hoping that the Department officials are listening in and will see the great disconnect in this service. It is fortunate we have this committee. It has given a voice to many of the groups. However, I really hope the end result is much more than a committee report and that there will be real and effective change. The problem with autism is that it is generational. There is no point in saying we will see the benefits of the organisations' advocacy and of this committee's work in 25 years' time. We really need to see it a lot sooner.

I will address the representatives of the Cavan group because they are my nearest neighbours. I was really struck by some lines in their written statement which read:

Every child has the right to an education [...] But without regular occupational and speech and language therapy, how can our children be comfortable in their classroom? How can they learn how to cope with the overwhelming or indeed insufficient sensory stimuli at school?

Has Cavan Autism Parents Support, CAPS, found resistance from schools? My view is that there should be special education classes in every school. Special education has to be visible. Your peers, your brothers and your sisters have to see it. It needs to be part of a class. As a society, we need to go on a journey with special education. Is CAPS seeing resistance? I know the witnesses can speak only on their experience locally.

Ms Noeleen Smith:

We are very fortunate to have a brand new autism classroom in our local school in Ballyjamesduff. That is where my kids go. The teachers are doing their best. They are all doing their autism training and so on but they are teachers rather than occupational therapists, speech and language therapists or psychologists. The kids are not getting those services. The teachers are spending too much time trying to be occupational therapists rather than teaching. It is a disgrace that these children are not getting these therapies because they are not reaching their potential. These kids are smart. They are as smart, if not smarter, than any other child but they are not being allowed to reach their potential because, as I have said, they cannot just sit in the classroom. I was at a parent-teacher meeting for my own child a couple of weeks ago. She has a lot of sensory issues with noise and so on. The teachers have to bring her out of the room when there is anybody else there. They do not know how to fix that. They are there to teach Aoibhinn her ABCs and everything else. They are not there to be occupational therapists.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Every children's disability team will tell you about its backlog. Does Ms Smith see a quick fix? If she were running the system, what would she do to fix the therapies issue and to get them into schools?

Ms Noeleen Smith:

I would bring occupational therapists in weekly or fortnightly to give teachers a plan as to how to help children and a goal to reach before the therapists come back the next time. That is a quick fix.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I am conscious of time so I will home in on the issue of respite. It is Ms Smith's experience that, unless a child is in a special school, respite will not be provided.

Ms Noeleen Smith:

It will not and, even if the child is in such a school, there is a three-year waiting list.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Is that the case nationwide?

Ms Miriam Kenny:

Yes. The National Council for Special Education is running a pilot programme with regard to having therapists in schools. This has been a pilot programme since 2015. Where is that at? We are also looking at placing therapists in special schools again. That is another big concern for children who have additional educational needs or who are autistic and whose therapies have been removed from their schools. At all times, what we want and need are children who are ready to learn but they are not ready to learn if they have all of those other things going on. It is exceptionally difficulty for our schools, our teachers and our principals. The great work that is going on in schools should be acknowledged but those schools need support. Mr. Power may wish to talk about the lack of support in special schools.

Mr. Alan Power:

The situation is similar to that of the assessment of need process and the changes made to it. Children need a combination of healthcare and education. If we look across the water to the UK, we see a legal entitlement to an education, health and care plan, that is, an all-encompassing plan for the child's needs. In mainstream education here, there is really only involvement where there is a crisis situation in the school. We had a system in special schools that worked very well. The therapists were on site in the schools. There was a team of therapists working with the teachers to ensure that any challenges could be addressed immediately so that the class could be set up. In spite of every stakeholder involved, including the schools, the specialists and the families, asking for it not to be done and even the Minister of State saying it would be paused and not done, this system was changed under the progressing disability services model. We are now trying to put the genie back in the bottle by getting these therapists back into the schools. In our special school, the principal is now working with 12 different children's disability network teams, CDNTs, to try to get therapists to support the different children. How do you unravel that? The parents have now been allocated to different CDNTs and are now going to lose those teams as we slowly put the therapists back into the schools. It is similar to the situation with the assessment of need process. Where is the accountability for senior managers in the Departments that are making these decisions, which will damage these children for the rest of their lives?

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I am conscious of the time but I have a final question on this matter. In our wisdom, we have dispersed responsibility for this area across the Department of Health, the Department of Education and now the Department of Children, Equality, Disability, Integration and Youth. Speaking plainly, who should be running special education?

Ms Miriam Kenny:

Me. I am only messing.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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That might not be a bad idea.

Ms Miriam Kenny:

I am keen to look at the holistic care of the person. Autistic people are people.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Of course.

Ms Miriam Kenny:

You therefore need to look at the holistic view. If you have disparate organisations looking at the area, that may be missed. It is really important that the Departments start looking at this in a very different and very strategic way. That is not what we are seeing. Instead, one Department does some things but not others while another Department does other things again. As a parent in the middle of all of that, it is exceptionally difficult to get the right supports for your child. We should be looking at best practice internationally and seeing what we can adopt to the best of our----

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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What is that model?

Ms Miriam Kenny:

I do not know and cannot give the Deputy an answer but I know there is a Canadian model and a Maltese model. We had Maltese people visit to speak about Malta's summer provision programme. There are models internationally.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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At the same time, Malta is looking at our school model. It has a great summer programme but its overall programme----

Ms Miriam Kenny:

That is why we are sharing. Is that not why we are part of the European Union? There are also great models in Australia. I have attended events run by the National Autistic Society in England which have been great. That body is ambitious about autism. We are also working very closely with AsIAm. We have a lot of really good people here. It is now about getting the right people at the table and moving forward.

Mark Wall (Labour)
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I thank everyone very much for coming here this morning. I have a number of questions to address in this committee meeting. I will start off with Ms Byrne and compliment the work of DCA Warriors. It is an organisation I come across very often in my line of work. The advocacy it undertakes and the help it gives to families at very difficult times is very welcome. I put that on the record. I hope she will continue the great work she is doing with DCA Warriors. I read her submission and heard her speak this morning. Deputy Tully referred to the gold standard, as Ms Byrne has called it, that is, the assessment of need. At our last meeting with the HSE, we were at pains to ask whether families need an assessment of need and its representatives were at pains to say they do not. They repeated that three or four times. Ms Byrne has described that as a very worrying development. I know she has already spoken to the issue but will she again tell us how it will impact on families to not have that gold standard? Will she comment on that?

I was very taken with Ms Kenny and Mr. Power's organisation's proposal for a centralised application system for school places. I am dealing with a number of families at the moment. One of these is on its sixth school in looking for a place. I also believe a centralised application system needs to be put in place. This was something we mentioned to the principals' networks. They spoke about time. Time is very important in this process as it allows for planning. The unions also spoke about that. Will Ms Kenny and Mr. Power again address the issue of a centralised application system and how the current situation is affecting families in Dublin 6 and Dublin 6W? They may also have other comments on that system.

It is something we could definitely get behind as a committee. When a parent rings you asking you to intervene with principals and saying they are on their sixth school, which is what I have at the moment, it is extremely worrying. Something needs to be done about it. I ask the witnesses to comment on that.

Ms Smith and Ms Boylan are from County Cavan. I am from a rural location. At the previous meeting we spoke about regional supports, and the issue was touched on by Ms Smith. Are other regions or County Cavan missing out on something that other bigger locations, such as Dublin, are getting, where there are a lot more supports? I know CAPS has looked at that before. Is there something CAPS has seen, as a community group in a rural area, on which it is missing out? We have mentioned the transport issue. Is there something else that is happening?

As the Chair is aware, we have been dealing with summer programme recently. We have a motion coming before us today on that. How is that affecting the organisations on the ground? Are summer programmes being offered in the witnesses' areas? How beneficial are they to families? Where they are not being offered or where the witnesses have heard stories of them not being offered, how is it affecting the routine of families?

Ms Aisling Byrne:

As I said, the assessment of need is the only legal avenue left. We see thousands of families every day who are crying out for services and help. I watched the previous meeting of the committee. The fact is Government officials think the CDNTs are working when they are not. I can speak from personal experience. I have two children on the autism spectrum, one of whom is 16. He was assessed 13 years ago. Even back then, we waited a long time and our assessment of need was outsourced. In those years my son has had no psychological input. Everything I have paid for, I have paid for privately. There are parents crying out that they have had the exact same experience. They have had no input from the services. I am very fortunate that I have linked in with the CDNT. We had our first individual family service plan meeting. My son's needs and goals were set out, and no review date was given when it should have been. He had a 15-minute meeting with an occupational therapist who has now left the service and is gone, so we are back to square one. There are parents who are being attacked daily in their homes by their children. I am one of those parents. I have cried out for help and supports and I have got none. CDNTs are complex. A child will not fit into one box either. There are a lot of severe and complex cases. We know of parents who have been killed by their children. That is the sad reality. For Government officials to sit there and say that CDNTs are working, to flare it up and say it is a brilliant service when it is not, is wrong. It is absolutely not working and we need to do better. We are at complete crisis point. I have never seen it as bad, and I have been working in the disability sector for 21 years. I have never seen it as bad as it is now.

Mr. Alan Power:

To follow up on the point about the CDNTs, the challenges with recruitment are well documented. The teams are 70% full. The target for the recruitment of therapists, who are doing incredible work, is 2,080 over the 91 CDNTs. That is 23 therapists per CDNT. A CDNT is going to be looking after thousands of children. How does recruiting 23 people suffice, even if teams are fully staffed? Is that our ambition? That needs to be fully reviewed. I do not know where that figure came from. It has to be reviewed.

Ms Aisling Byrne:

I saw an advertisement the other day for an Irish professional body promoting overseas recruitment. Come on.

Ms Miriam Kenny:

We must be aware of the impact on children when they are not able to attend school because they do not have proper support. I see it professionally in education. It impacts on every part of the child's life and the family's life when the support is not there. It impedes the child's potential and their future and leaves families in a desperate situation without proper access to child and adolescent mental health services, CAMHS, and things like that. I do not think there is a full understanding of how much distress that causes all of the members of the family and the child who is at the centre of that.

Mr. Alan Power:

On the question of the centralised system, to understand the process today of how parents apply to send their child to school, the first point of call is the NCSE. A SENO is not assigned at that point because the SENO is attached to the school. What the family gets from the NCSE is a list. The parents then go around and call dozens of schools, asking if there is a place for their child. There is no visibility of whether schools have places. Parents are just given a list and they call all of the schools. There are thousands of parents making fruitless begging calls. It is a brutal system in respect of what parents are made do. There are also GDPR issues in sending around applications to dozens of schools. That enrolment for schools is open from October to November and the NCSE publishes its list of upcoming available classes in the following April, May or June in itself is ridiculous because enrolment has closed. The parents have missed the window for applying for the school. A simple thing the NCSE could do is to publish that list earlier, with clarity on how many places are available in each class for the upcoming year. It would save the schools a lot of time in fielding all these calls. The introduction of a centralised system would not be rocket science. We do it for the CAO. A secure system could be introduced to prevent any GDPR challenges. Also, the NCSE would be getting data on where the next child is coming from. Today, I do not know how it does it. Deputy Tully mentioned the SENOs. Some are contactable and some are not. The NCSE say the SENOs are its eyes on the ground. Some of them do not pick up the phone because there is nothing they can do for parents because there are no classes in the area. Parents could be calling them 20, 30 or 40 times and they do not get back to them. It is a crazy system. It absolutely needs to be centralised.

Ms Miriam Kenny:

The other thing is planning in schools or around that. If we open a class with six children of a certain age, more than likely those children will not leave that place for eight years. Therefore, in fact, that place is gone. Again, we have to look at the supports for the students. Perhaps students should be able to move back and forth a little bit more, in and out of the mainstream environment. In the case of an autism class in a mainstream school, it is about integration all the time. We are trying to encourage integration, even though it might not always be possible for every child. If everybody takes in junior infants or first years, then more than likely those class places will be gone. Planning needs to happen in respect of that. That is something to look at. The CAO system works. I work with it all the time. We need to look at the system. We do not need to be putting in all the information again. If there were up-to-date information for parents, it would reduce the stress for them. Parents are calling schools. Other schools will then say they do not need a class because nobody is ringing them. Nobody is ringing them because there are no classes. It does not mean there is not a need for a class if people are not ringing the school. That administrative burden needs to be taken away from the schools so that they are allowed to do the teaching and learning and to be involved in all that they are supposed to be involved in.

Ms Trina Boylan:

On the Senator's question about services being available, it is not just an issue in County Cavan. We have members from counties Leitrim, Meath and Monaghan. When you listen to people, it is the same everywhere throughout the country. There are so many vacant positions within the HSE in Cavan. We have many parents ringing us about it. The positions are empty and they are just not being filled. Why are they not getting more occupational therapists and speech and language therapists? Parents have no choice but to go private. Even the private therapists are full, so there are waiting lists to access those services. It is not just an issue in Cavan.

Ms Noeleen Smith:

The summer programme is optional. I know of a local school that did not provide the programme in 2021 but provided it in 2022. To be honest, two weeks out of the whole summer is not enough. Kids with autism need routine. It is a long summer to go from such great routine to nothing all of a sudden. It has a huge impact on them.

Schools rely on teachers to do the July provision and teachers need greater incentive. There needs to be more planning and work done on who does the July provision, what they do and for how long they do it.

Micheál Carrigy (Fine Gael)
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That is what our motion is about and why we have issued it today. We recognise we need to broaden the type of professionals who work in the system. Representatives of the Maltese Government were here this weekend and I know the Department officials have met them. I believe there is a will to expand the programme for next year and I would like to see that replicated by the schools. We have met representatives of a number of the teachers' unions. Senator Wall mentioned that a group of schools in Naas came together to make sure that at least one school in the town provided the summer programme. We need to consider a situation where all special schools provide the summer programme and that at least every town is covered so people have a programme available close by.

Deputy Joan Collins is online but is not on the grounds of Leinster House. She wants to ask Ms Kenny specifically whether the situation has improved for children accessing local mainstream schools in the area. The Deputy also wishes to raise the issue of dental appointments for children in classes.

Ms Miriam Kenny:

I thank Deputy Collins for her question, and there has been an improvement in her own constituency of Dublin 6W. I have reflected on the matter and the reality is that Dublin 6W has large well-established schools and only one school is a fee-paying school. There has been some change in the provision to do with primary schools but not all of the larger primary schools have opened classes. Some parents move to the area to go to schools in the areas of Dublin 6W and Dublin 6. Children come from well outside the area to come to our schools, which means our own local children cannot attend their school. There are three of us in one estate who should attend a local school but, unfortunately, we cannot. That is very difficult for us because the whole area goes to that school. There has been some change and we welcome that but there is much more work to do.

Unfortunately, there has not been the same level of change in Dublin 6. Again, on reflection, we have different patron bodies in the area and a number of fee-paying schools. If you look at where classes have been set up historically and if you are looking at Dublin 14, Dublin 16 and Dublin 18, there are fee-paying schools in those areas. We would feel, and based on our data it will be found, that there are fewer special classes in those areas. What does that say to the committee? I am just going to leave that there.

We need to keep changing that. Great progress has been made with the Spiritan Education Trust that runs a number of fee-paying schools and is opening up a special school in the area, which is greatly welcomed. It will be the first educational trust that will open special classes within its fee-paying schools, which is a huge change. That is a change on its own behalf and the Spiritans have decided to do that. I will not list the schools but if members research that, they will find out what those schools are and they will know what I mean by that. We now need to see the same thing happening in the other schools of different patronage.

Children are very well supported in fee-paying schools and people do very much try to meet the needs of the children, but the funding would not be the same. Also, the funding for special classes in fee-paying schools has not been there historically. There needs to be change within that to encourage diversity and inclusion within these schools so children of all different needs, disabilities etc. are part of that school environment.

We have incredible schools in Dublin 6 and Dublin 6W. The testament to that is parents move to the area and try to ensure their children attend local schools.

On dental appointments, I have seen what is being referenced. If your child is in mainstream education and you apply for the special dental service to do with autistic children, you are told that your child cannot attend that service if he or she is not in a special class. That happened to us personally as parents. My husband, who is not here today, rang to ask and spoke very clearly that that is discriminatory. What the Department is saying is that a child who is autistic, who is in a mainstream environment and not in a specialist school setting cannot access dental appointments for autistic children. Historically, that is what has happened and I know the parents of Dublin 12 have raised this issue recently. My husband and I have experienced this as parents.

Micheál Carrigy (Fine Gael)
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That is unbelievable and not acceptable.

Catherine Ardagh (Fianna Fail)
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I thank the groups for coming in today and for the advocacy work they have done over the past two years on behalf of the parents of autistic children. There are other groups, like the Dublin 12 Campaign for Inclusion, that have been doing similar work and, as Ms Kenny has stated, have raised issues concerning access to dental care.

We, as a committee, can make comparisons. Today we are having a discussion with parents and advocates and last week we met representatives of the HSE. It is like we are living in two different countries. The HSE representatives are living in this amazing country where there is a functional CDNT and kids are getting great therapy, while the parents and advocates are living in a different country with a hugely dysfunctional CDNT with huge vacancy rates. The way that the HSE described the CDNT model made it sound amazing and textbook perfect. If I were to write an essay on the CDNT model on that basis, it would sound the best way possible to do it, but clearly the CDNT model is completely dysfunctional and is not working. I do not know many people who are getting any services, and the parent and advocates present have described that situation as well. Senator Flynn asked the HSE representatives directly whether they thought the CDNT model was the best model and they said, yes, hand on heart, they absolutely thought the CDNT model was the best model.

My contribution related to therapies in schools and I meant all schools, not just special schools. The HSE representatives came back to say they are working on providing therapists in special schools but fudged the issue on whether the CDNT model would move back into mainstream schools. A pilot schools inclusion programme took place in Dublin South-Central but it did not seem to take off. Covid seemed to throw a curveball at that.

Why do the delegations think we have high vacancy rates? If therapists were employed directly by schools or had more direct access to schools where their working day revolved around the school day, do they think that would work? From speaking to therapists, I think that is something that might appeal to them a little bit more.

I have an observation rather than a question about Ms Byrne's contribution, which is that she must keep stating what she said. As my colleague Senator Wall said, the HSE representatives were so clear to us and pushed so hard that an assessment of needs is not necessary to get services. We know that is not true because an assessment of needs is necessary to get into any early intervention class, even though they say that is culturally wrong, that the schools have brought that in, and that it is not in law that an assessment of needs is necessary, but we know it is needed. If anyone is applying, they need an assessment of needs for home tuition and domiciliary care. That point is very important and I am glad Ms Byrne spelled it out because many people at home will be watching her. It is very important we reiterate that it is actually very important to get an assessment of needs, and that cannot be allowed to be downplayed.

The HSE representatives also mentioned they were in talks about bringing in day respite for families, which I think could work. Have the witnesses had any interaction with the HSE on talks about day respite services?

Ms Kenny and Ms Smith mentioned the issue of secondary school placements. There have been some improvements in the provision of autism spectrum disorder, ASD, classes in primary schools. It seems to be very difficult now for parents to get their children into a secondary school and have an appropriate placement. It is almost like the Department thinks that autism fades when children reach secondary school. Do the witnesses have comments?

Ms Noeleen Smith:

It is just that. What is going to be done when these kids move on? Is there any plan in place? There is a serious lack of secondary school places. Where I am from in Cavan there is an autism class in Oldcastle, which is not too far from Ballyamesduff. That is okay for a child in a mainstream class. In an autism class in a primary school setting, there are high ceilings and so many of the rooms have been designed for these kids. There seems to be none of that for second level schools. It is a huge worry that the same effort is not put into the secondary schools.

Ms Miriam Kenny:

There must be a realisation that when a child with autism goes into second level school it can be exceptionally challenging for them, particularly if they have already maybe managed in a mainstream setting. When they get into secondary school the complexity of trying to manage a very busy school and trying to manage the complexity of movement in and out of different classrooms is excessively stressful. In one way, the need could be higher in a secondary school. Some of these children could have managed within the mainstream environment at primary school, but not at second level. Again, we need to plan. If we are not planning then these children will go from one school to the next without proper support. These range from young children who need to be in an early intervention class and who need proper support, then there are children who need support in primary level and then again into secondary school. We must also consider the universities, which are considering starting to look at autism-friendly universities. If the child gets that far then we must look at those pathways.

Coming back to the secondary schools, however, at all times it can be excessively stressful for students within the mainstream setting. If they had somewhere to go within the school and if they had autism classes in the school, then they can be supported. Within that, we are talking about sensory rooms, sensory spaces, and access to therapeutic services within the school or within a counselling service. At all times, parents need to be met with compassion. By this I mean that the system is trying to support the family to ensure that the child remains in school, and in remaining in school receives access to their education and their potential in the future. This is something that really needs to be looked at.

In the context of models within that, there are some fantastic educators working in education at second level schools who could be spoken to and who could really have a lot to say and a lot of input to give around what is working. I am aware there is a school in Kinsale that has seven classes for children with special educational needs. Some of those classes are for children with autism, and some are for children with moderate learning disability. That is on-site in the area. It does work by doing it in different areas. We really need to start planning for that because all of these children are going to move through a system, and they need support at all times.

Ms Noeleen Smith:

They will also need support when they leave secondary school. If they do not go to college, where will they go then? They need support the whole way through and not just at primary school level. We need to be making plans for the child's whole life.

Ms Aisling Byrne:

I reiterate that directing parents away from the assessment of needs report is more in the interests of the HSE; it is not in the interests of the child. Service statements are often defective in any event. Not a lot of parents know, because they are not told, that there is a yearly review of their service statements. Now, unfortunately, due to a recent court case these will again be on hold until 2023. Again, there is more backlog and more pushing onto other services. It is just not acceptable,

Ms Miriam Kenny:

We have talked about trying to keep people within the service. I worked in the health service and it can be a very stressful environment in which to work. That is the first thing I will say. The second point is with regard to therapists. We find that we meet people who are excellent and very much want to do the right job, but they are totally swamped and feel that they are not providing the quality of service they want to provide. Why would a clinician stay within that if he or she is not providing the service that he or she was trained to do? I speak to many different friends who are involved in and who work in those areas. They will tell us that they cannot maintain it. They are also meeting people and parents who are distressed. Much of the time, the therapists are the front line and they get the frustrations of the parents. It is so upsetting for them if a person trained and went in as an occupational therapist or as a speech and language therapist and that person wants to deliver a service and is not able to deliver that. I have spoken also with people who were involved in senior management within the disability sector and who found it excessively stressful. Again, this is due to a lack of resources. Again there is goodwill and they want to do the right job but they cannot do it with what they are given.

We need to go back to have a root and branch review of what they are doing. On paper some of the things like the children's' disability network teams look great but we need people, at all times, to provide a service. We need to support that service and we need to embrace the people who are actually delivering those services, and make sure that they want to stay and want to be employed by the HSE. Why would somebody do that job if they cannot actually deliver the service they trained for?

Ms Aisling Byrne:

I echo what Ms Kenny has said. A lot of people working in children's disability network teams are parents of children with additional needs themselves. I do not work for a children's disability network team directly, but I am one of them. I worked in disability services for 21 years and the burnout is unbelievable. People working there genuinely care and they want to provide those supports and services to children. Retention is a big thing, just to echo what has been said already.

Micheál Carrigy (Fine Gael)
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I thank Senator Ardagh. Our next speaker is Deputy Pat Buckley.

Pat Buckley (Cork East, Sinn Fein)
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I will be very brief because the representatives sound like they are on trial over on the other side there. I am delighted that all of the witnesses' statements are now up online. The stories have been absolutely powerful. We can hear the witnesses' emotion, their anger and the resentment. They are all there. I thank all of the representatives for their total honesty on it. The frustration is absolutely unbelievable, but the thing about this committee is that it is a joint committee and politics are left outside the door very fast. We are all passionate about what we do in here. I have only one question. Is there a golden egg or just one legislative change that we could force, even as a joint committee here today, that would improve the services or put on a statutory basis that what representatives are saying and recommending? They are the experts and are the ones who are living all of this life. It does not matter how many college degrees a person has, the representatives here have the experience day to day. What would that be, if they could tell me?

Ms Aisling Byrne:

It would be to have children assessed properly and in a timely manner and to provide the services in a timely manner. That is all we really want as parents: to have a children's needs and rights met, and not be fobbed off and told that the assessment of need is not important. It is about having our children's voices heard and having them assessed in a timely manner, and then for those services and supports to be put in place so the children can reach their full potential.

Ms Noeleen Smith:

I have to bang on and keep saying that early intervention is key. That is what we want. We should not have to wait years and years to get our kids diagnosed, and then have to wait years and years for therapy. We need it done straight away and we need the therapy straight away. That is the golden wish. Early intervention is key.

Ms Miriam Kenny:

From a legislative point of view, my understanding is that the assessment of need must be provided but that the State does not have to provide services. It is like saying to anybody else who has a diagnosis to do with any other disability or anything else "We are terribly sorry about that, there you go, that is what your need is and we cannot actually meet it." One is not told this in any other situation. I am not trying to medicalise autism but people are not told this in any other condition or anything else, be it a child or an adult. We are told, "We are definitely sorry about that but there you go, this is what your need is and we will see you in about ten years". That does not happen in other areas so why should it happen in this area? We must go back to the expectation piece and the accountability piece: we need to expect much better from our services.

I was thinking about the service aspect. The supplementary information that I sent to the committee was just information that I put together myself. We have national organisations. Do they not survey their customers to see what their satisfaction is like? From that, one would develop a service that meets the needs of the individuals that are there.

Another point I would like to raise today is that we have had phenomenal support from our politicians. They do not always get thanks for that but today I would like to make public thanks for that. We have had incredible support. In Dublin 6W, we have three different constituencies. We have had such great support and we just wanted to say this. Most people want to do the right thing here but we now need to move forward, stop the talking and get some things on paper. It is so difficult because there are so many things that we would like to say to Deputy Buckley in response to his question. We must come back and remember that it is about our children. We must give them a voice and that is what we are doing here today.

Pat Buckley (Cork East, Sinn Fein)
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Thank you. That is brilliant.

Micheál Carrigy (Fine Gael)
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Deputy Ó Murchú is not a member of the committee but-----

Ruairi Ó Murchú (Louth, Sinn Fein)
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I am an interloper.

Micheál Carrigy (Fine Gael)
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-----he has consistently attended meetings because of an interest he has in this area.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I thank the Chair. It does not come as any shock that a lot of the witnesses have autistic children or relatives. My son is autistic so I have skin in the game, as they say. We can get into the ins and outs of the assessments of need and the therapies that are not happening but listening to the HSE last week, the one message is that it is not likely to be able to offer the service that is required in the near future. The foreign recruitment drive and the localised stuff is not going to deliver. It also looks like we do not have the workforce planning done to have the throughput for even three or four years' time. That is something that has to be put on the agenda or we will be having this conversation forever. Páiric Clerkin of the Irish Primary Principals Network, IPPN, was before this committee recently. This might relate to some of the stuff Mr. Power said. Mr. Clerkin suggested a change to the admissions Act so people, particularly those with special needs kids, could apply two years beforehand. That would give schools an element of organisational time. Beyond that, if necessary, he said section 37A should be implemented. We have all heard stories from parents and we all know the situation. Things are better in primary schools. The information is there. We know there are more kids coming through and we do not have the services in second level. The thing about an education and health care plan, EHCP, is that it crosses everything. This is about schools and health but it is also cradle to grave. We all know the difficulty with adult services. I ask the witnesses to go into a bit more detail on that. I have covered the entire gambit and they have about two minutes to answer all that so I apologise.

Mr. Alan Power:

I do not understand how representatives from the HSE can come in and say these things. The damage they are doing is incredible. They would be better off saying the HSE is not going to provide a service because people wait and those kids do not get that time back. They should come in and say it is not providing a service because then we could make alternative arrangements. To keep families waiting months and years for a service and not provide it is hugely damaging.

The EHCP is in place in the UK. It is clear that a lot of the Government bodies only respond to legislation so I would ask the committee to look at that. The EHCP gives the child a right, from an educational perspective, to an all-encompassing plan for their lives. It is managed by the council and councils are given specific personalised budgets to manage this. Something like that would be much better system than what we have now with disparate organisations not communicating.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It is a service that would follow the kid.

Ms Miriam Kenny:

And the adults.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It is right through.

Ms Miriam Kenny:

It is quite comprehensive. Within that, a school may not be able to provide a service but the way the funding model works is different in England. What the Deputy said about the schools is a good idea as they could plan in advance. There is another issue with the application process. We come across this with parents a lot. The application process and the admissions legislation have changed. Schools can no longer discriminate on anything to do with the Equal Status Acts. Unfortunately, they can discriminate if a child is autistic and it is to do with autism classes. In some schools they will say autism classes are for children with complex needs. Schools can say that a child's level of cognition is a mild learning difficulty. That means some parents, therefore, cannot apply to local schools or certain schools. A number of parents had contacted us about that. The only thing in the Education Act that we are aware of is to do with the special schools. Parents also contact us about that. They say they cannot send their children to a special school, even though they were told to make a section 29 appeal, because the child does not have a mild intellectual disability but a moderate one. When I was looking for a school place for my child, we were told we were on the wrong side of a road to apply. We were told to put together a section 29 application. Parents might then go to the bodies that are supposed to be putting the policies in place and could be told again to take a section 29. We have raised this with the Ombudsman and he said the Department of Education said if any parents know of this happening, they should advise the Department. The Department should be making sure all the policies in schools are absolutely in accordance with what should be there. That goes back to the governance and the boards of management. We have raised that a little bit as well. The inspectorate has said we should be looking at the governance and the boards of management and so on. Schools are really complex when you are working in them. We have to applaud our school leaders who are trying to instigate things and the voluntary people who go onto the boards. If a parent has a difficulty with a school or needs to bring a grievance or complaint, we encourage our parents to work collaboratively. It is very difficult. Parents are extremely vulnerable and worry that their child will be asked to leave the school. If someone has that fear every day and has nowhere else to go, it is really difficult to raise your voice.

Ms Aisling Byrne:

On the HSE issue, after the PTAs were deemed to be unlawful - it was one of our families that took that court case - DCA Warriors sent out a statement to most of the Ministers. We asked for a meeting with the Minister of State, Deputy Rabbitte, as well. It fell on deaf ears. We were completely ignored. Thankfully Deputy Tully managed to get a reply from the HSE but there were no concrete answers in it. We find that our voices often fall on deaf ears. We are not listened to. We are delighted to have been invited here today to have everyone's voices heard because it is really important.

Ms Trina Boylan:

It is exactly like Ms Byrne said. The HSE should be listening to everybody. It is not just one group that has a problem. It is nationwide. It needs to listen to everybody.

Micheál Carrigy (Fine Gael)
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I thank the witnesses for the work they and their groups have done, not only for their own children but for all children in their communities. It is not right or proper that parents and voluntary groups have to campaign so hard to get the services our children are entitled to. I speak as a parent as well. I have an autistic son. It is my job as a parent to make sure he reaches his potential. He will. We have a responsibility as a group, collectively and across all parties, to make sure we make changes. Ms Kenny read out a quote from Donogh O'Malley, "We will be judged by future generations on what we did for the children of our time." That was pertinent in 1966 and unfortunately it is pertinent in 2022. That should not be the case.

We met the HSE last week. There are over 800 funded, unfilled places across the CDNTs at the minute. The HSE has let us all down by not forward planning to make sure we have sufficient professionals coming through the education system to fill the need that is there to provide services for our children. The Disability Act 2005 was mentioned by a number of people. I personally think it must be changed and we need to add the right to services. It cannot be just be the right to an assessment because that is an opt-out clause. We need to add services because every family has a right services for their children. I commend the witnesses but any group that is putting in this much time and effort should be given State funding. I know the voluntary work that goes on.

I live just across the county boundary in Longford from Ms Smith and Ms Boylan, and I notice the work, the time and the effort that their groups put in. I fully agree that we need to see that type of group and service across every county supporting families, but they also need State funding support to be able to provide their services. I take the point.

Perhaps Ms Kenny might expand on what was said regarding fee-paying schools in her closing remarks. I have not seen the statistics, but I assume that the percentages of special classes in fee-paying schools are very low.

Ms Miriam Kenny:

Our understanding is that there are none. It is not because some schools did not want them to be there. While there has been some change, my understanding is that they have not been funded to open special classes. The Libermann Spiritan School will hopefully lead the way in this change. This is a cultural one which needs to happen. A funding change also needs to happen to support schools. Again, great work is going on in those schools and great support is being given but this is something that needs to change culturally where children who have additional needs can also attend those schools, are supported, and that all of those schools, from a diversity and inclusion point of view, are supported.

The other thing that should be said is that the weighting is different in the context of the allocation of funding for additional educational needs services in girls’ schools because, historically, it was felt that girls had a lower presentation of different issues, but that is not true any more. Things are changing as girls are beginning to receive diagnoses. Girls tend to mask things a great deal more.

There are many matters in the context of funding. In general, in respect of additional educational needs posts in schools, I spoke to a deputy principal yesterday who told me, which I did not understand, that the school is not funded. It would have a great deal of work to do within that to ensure that the quality of education and the supports are there for those children. Those schools are not allocated enough hours, which is dependent upon that. There is need to look at the structures as to what is going on in schools and how that can be best supported.

There is a unique situation in certain parts of Dublin and south County Dublin in the context of fee-paying schools. There are a few schools dotted around different areas, but they are mainly in the areas I have just mentioned. The change has to happen and, within that, hopefully, the Spiritans will lead the way and things will begin to change.

Micheál Carrigy (Fine Gael)
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I thank Ms Kenny for that. I am a firm believer in the school inclusion model and in bringing the therapies into schools. I am aware that a pilot took place in the CHO 7 area, which, I understand, comprises Kildare, Meath and Dublin, but that report has not been published yet.

Catherine Ardagh (Fianna Fail)
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I recall a particular witness giving us a synopsis of that pilot, which seemed to stall a little bit during the Covid-19 period because there were issues with staffing. Obviously, the schools were closed and we may need to ask for a new pilot.

Micheál Carrigy (Fine Gael)
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From what I hear, it was quite successful.

Ms Noeleen Smith:

I cannot see why it would not be successful. We have children who went to early intervention schools and, again, the parents had to pay privately for occupational therapists to visit those schools. All of the parents would pay privately, which is not right, but they did that and an occupational therapist would visit regularly. That was a fantastic support to the teachers and, obviously, to the children also.

Ms Miriam Kenny:

Most of our parents are paying for private therapies. Again, not every parent can do that, which is why it becomes very upsetting. This is such an inequitable situation. Many people cannot gain access to private therapies now either.

What one really needs, if one's child is in a special class, a special school, or in a mainstream setting, is that the school is able to contact people in a multidisciplinary team to support the child. In supporting the child, this also helps the school. There is an inequitable system now, where some parents cannot afford any therapeutic intervention. To me that is heartbreaking. Some parents can, but even that is also a very significant cost to them.

Ms Aisling Byrne:

One also then hears of parents being taken off public lists because they are paying for private therapies. That is another aspect of this.

Mr. Alan Power:

I reiterate that in special schools, the therapists were there working with the teachers hand-in-hand and it was fantastic. One would have the speech and language therapist in the classroom. They would have children of all ages there and would be setting up buddy systems. The teacher was very well supported but it was deliberately broken under the progressing disability services for children and young people programme despite the fact that everybody was saying that this was working very well in these schools. We need to understand that kind of accountability and to know who is making such decisions in order that they do not make them again. If they continue to make these decisions, we will be back here next year and the year after.

Micheál Carrigy (Fine Gael)
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One theme that was common among all of our guests' contributions was the emphasis on the early intervention scheme.

Would any of the witnesses like to make a final comment or statement before we conclude this session?

Ms Noeleen Smith:

I would just like to put out there that even in mainstream schools, in particular in country schools, there is a greater awareness of autism for young children to understand their peers with autism, and not just in schools where there are autism class. In general, there are programmes available in country schools to teach young children about their peers with autism and about why they might act and behave in certain ways.

Micheál Carrigy (Fine Gael)
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Does Ms Byrne wish to comment?

Ms Miriam Kenny:

I would like people to be ambitious for autistic children and to raise the expectation. In doing so, they will need support, as will the schools. That is very important because our children are going to be adults, which I said already, and we need to be ambitious for them. Every other parent I know is ambitious for their neurotypical child in planning for the future but it is very difficult to plan for the future when one is constantly fighting and battling. It is very important that within that ambition for our autistic children that there is a family which needs to be supported there.

We did not touch on many of the issues that are arising with mental health, physical well-being, etc., of parents who are being dramatically impacted. These may be parents who are no longer working because they have to provide the support at home, cannot access carer’s benefit, and such matters.

In order to be ambitious, one needs the support from all different sides to do with autistic children, and children who have additional needs in general. It is not all just about autistic children. I am aware that we are here today to talk about autistic children, but there needs to be an understanding that we should be embracing all children and looking after them equally.

Micheál Carrigy (Fine Gael)
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I thank Ms Kenny and all of our witnesses for their contributions. There input has been of great benefit to us. I promise that our report will represent the views of parents. That is something we, collectively, have always said, and that is why we want to hear all of the views of parents. We want our report to be reflective of the need that they see for their children and to ensure that our children reach their potential.

Our meeting will be suspended now for five minutes to allow our witnesses to leave. We will resume with the second session of the meeting, which will involve a discussion with Dr. Susan Crawford and Ms Eleanor McSherry.

Micheál Carrigy (Fine Gael)
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For the information of the 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 the Constitution and statute, by absolute privilege. However, if they are giving evidence remotely, from a place outside of the parliamentary precincts, as such, they may not benefit from the same level of immunity from legal proceedings as a witness physically present does and they may think it appropriate to take legal advice on the matter. Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a 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 that person or entity. Therefore, if witnesses' statements are potentially defamatory 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 Dr. Susan Crawford of Get Autism Active and Ms Eleanor McSherry of Adult Continuing Education in University College Cork and Hibernia College in Dublin. The committee is grateful to the witnesses for taking time out of their schedules to contribute to its deliberations. Both of our witnesses bring with them a wealth of knowledge and experience in the area of autism policy, both as academics and as parents of autistic children. The committee looks forward to hearing the views of the witnesses on how the State can better support autistic children and adults. We are interested in discussing issues relating to assessment, therapies, education and employment, as well as anything else the witnesses might consider relevant.

Before we hear from the witnesses, I propose that we publish their opening statements on the committee's website. Is that agreed? Agreed. I call on Dr. Crawford to make her opening statement.

Dr. Susan Crawford:

I thank the Chairman and committee members for the invitation to address them here today. I call this a reflective case study. I have listened to some of the presentations prior to the break and I think they capture so much of the similarities of the journeys that we all have. I come with both personal and professional experiences and expertise in what is an ever-expanding field of autism. Equally, prior to addressing the committee, I reached out to autistic people, parents and professionals in education, health and disability disciplines, to garner what they view as the priority areas to explore with the committee. Hence, my address reflects this valued input.

My journey in the world of autism began somewhat unexpectedly back in 1998, when my only child, Tomás, was diagnosed as autistic at the age of two. I was, to say the least, a maverick to autism. I had trained and worked in both nursing, midwifery and sports injury therapy and at the time I was completing a BSc degree in sport and exercise science at the University of Limerick, as a mature student. I took time out and set about educating myself in the field. It was a quagmire to negotiate. At that time, we had only disjointed and sample services in Ireland. I reached out internationally to experts who directed me, accordingly, to what was then best practice in autistic education, health and well-being. I travelled globally, completing courses as they arose. Also, at that time I was fortunate to connect with parents on the same journey and a sharing of resources began. Together with three mothers, I set up the first autism support group in County Clare. We actively fundraised and brought experts from around the world to County Clare to get parental education off the ground. Meanwhile, at home, Tomás's trajectory was becoming more obvious. He was a night runner, so rather than fighting the darkness, I got up and ran with him. From early on, I learned the benefits of taking his lead. It was to prove a lifesaver.

I returned to my studies and, with the support of my lecturers, I completed my degree and secured an Irish Research Council scholarship to do my PhD. My study was the first to examine the development and delivery of movement programmes for students with disabilities in Irish schools and to further research the effects of such an intervention programme on the skills of autistic children. It was the first study of its kind in Ireland and the findings did not surprise. Then as now, teachers were clearly highlighting that they had neither the skills, equipment, supports nor time to develop or deliver programmes to autistic children, especially movement programmes. Equally, the study showed that with intervention, students' skills not only in movement but also socially and emotionally, improved. Our lives evolved at home. Tomás was in need of a primary education provision. With the support of the principal in the local school, I researched, wrote and delivered our proposal for an autism-specific class to the Department of education, informed by international best practice. We got approval and the class took off. This was the first autism-specific class in a mainstream school in this country.

We had sought and secured in-class support for a visiting speech and language therapist, a visiting occupational therapist, a sport and exercise scientist, a psychologist to oversee the service, SNAs for each of the children and external review from Professors Rita Jordan and David Sugden, who had significant expertise in the field. Within the year, there was a waiting list and again with active funding and the approval of the Department of Education, the autism unit was built. This has now evolved to accommodate 12 students. Staff associated with that service were actively encouraged to develop their knowledge and expertise with Professors Jordan and Sugden and many others and in-house workshops were the order of the day. However, what was clearly identified and needed back at the outset in 2001 is as much a requirement today. Clearly, current provision does not reflect this need.

Our lives evolved. Tomás was further diagnosed with learning disability and a speech and language disorder and he moved to St Clare’s Special School for his ongoing education. I completed my PhD and joined the staff at UCC as a lecturer and researcher in the School of Education. During this time, I quickly established valued links in community. My students and I evolved to gain hands-on experience developing, delivering and promoting quality movement programmes for autistic participants, from preschoolers to old age. It was to have a profound effect on all of us involved. Autistic children and adults, and indeed those with additional conditions and diagnoses thrived with hands-on, appropriate and evidence-based interventions that addressed frequency, intensity and duration of meaningful practice from trained personnel. I received the President’s Award for this work. Tomás was further diagnosed with epilepsy and catatonia of autism. Epilepsy now affects 30% of the autistic population and catatonia of autism affects 18% of the autistic population. I was fortunate to have been awarded a Fulbright scholarship in 2015. Tomás and I travelled to San Francisco to work with experts in the field, developing my own Get Autism Active online programme. While there, expertise in the field of autism and health helped us source the appropriate expertise for catatonia. We returned home and brought two teams of catatonia experts to Ireland to work with medical and social care teams here to establish clear evidence-based protocols in its management. That is currently ongoing.

I left the post in UCC in 2018 and set up my own consultancy in the area of autism education and training with specific emphasis on the importance of developing quality movement skills. As evidenced by my own work and that of others in the field, movement breaks are an integral part of each day for all on the spectrum for health, education and quality of life gains. In 2019, Tomás and I ran and walked the Wild Atlantic Way from Kinsale to Free Derry Corner on an "Autism Active-Autism Aware" agenda over 88 days. We met many parents, professionals, passers-by and members of the public who sympathised, empathised and learned first-hand with us of autism and the power of movement. Since then we have rolled out training to parents, professionals, libraries, and local community groups including businesses, sports partnerships and teacher education centres to mention but a few. Here in Clare, organisations have evolved their service provision to include video vignettes of their services on social media and websites, sensory spaces and sensory kits, communication boards and autism aware understanding and acceptance training and certification.

In summary, from our case study and the voices of our fellow stakeholders the issues are still appropriate access to early diagnosis, intervention and support, the earlier the better and the greater the chance of success and development although it is never too late to intervene; appropriate education and training for all parents and professionals. I speak quite a lot to educators and healthcare professionals and, time and again, they highlight clearly their own lack of training in the world of autism, their lack of awareness and understanding of autism and the greater issues and needs associated with diagnosis. A further issue is access to appropriate education and service provision across the lifespan. It does not start or stop with school-age children. We see preschoolers being identified as presenting as autistic. Surely we can identify up the line, if learning disability comes in at the age of four and something else comes in at the age of six, they are going to be in a service on an ongoing basis. These issues need to be addressed across the lifespan. Also needed is appropriate access to multidisciplinary professionals and services. I heard many people speak earlier about the need for occupational therapy, speech and language therapy, psychology and so on. All of these people need to be working together. It has to be multidisciplinary. As to where or how it is provided, I feel the educational setting is the place. Back in the day when I set up the first unit it worked really well. It showed a successful model of practice. Respite provision and summer support services need to be addressed. Clearly, if we address respite provision appropriately, parents, carers and others will maintain people in community in their own homes. Equally, if the summer support service is developed and addressed properly it too can have significant positive impact on the health, wellbeing and education of children and adults who are autistic. An interdepartmental “top down-bottom up” mindset change is needed. I understand the committee was addressed by the HSE last week. In my personal and professional experience there is no joined-up thinking whatsoever in the HSE. That is a massive issue from start to finish. This really has to be addressed from the bottom up but also from the top down. Finally, when I see what we have achieved in County Clare and in different pockets around community and educational settings, I see no reason we cannot lead from the front as a country. We should be making ourselves the autism hub of Europe. We can be a model of research, policy and best practice if the will, commitment and energy are there to do so. I look forward to the committee members' questions and thank them for their time.

Ms Eleanor McSherry:

I thank the committee for the invitation to speak this morning. It has taken 20 years to get here so I am very happy to be here. I am a lecturer and programme co-ordinator/designer with adult continuing education at University College Cork, ACE at UCC, and I am adjunct faculty at Hibernia College Dublin. I am currently also doing my PhD at Maynooth University on autism representation. As we heard from Dr. Crawford, autism is not just our children being born; it affects all of our lives and we become experts in this area. I am also a parent of a 24-year-old autistic son. I co-founded the Special Needs Parents Association of Ireland in 2010. We had to close because we were all burned out by 2020. We supported 57,000 families across Ireland. I have been a national and local advocate for parents, their children, for myself and for my son. I also found out recently that I am also autistic. I spent many years preparing my son for the world and decided that I was not going to wait any longer for the Oireachtas or the Government to make changes. I was going to make changes myself and be proactive. Even though my journey has been very difficult with my son, I am here today to talk briefly about autism policy and then about the groundbreaking work we are doing at ACE at UCC that illustrates what can be achieved when we have the will to change.

I will begin with autism policy. As I always say to my students in autism studies, here is where things start getting very dark and cold. I will be very blunt and brief. It is a long, sad story. Irish legislation and policy tends to be reactive rather than proactive. It is put in place after something bad has happened, usually a court case. We have currently no legislation that even mentions autism. We have no accurate figures for autism in Ireland. What we currently have is a mishmash of different figures that do not even consider adult diagnosis. We have four working definitions of disability which do not mention autism and do not adequately describe it either. We have had two defunct Autism Bills, an Autism Plan 2019, and one attempt at a strategy in 2021. We have a number of autism reports going out across different Departments. The one I really want the committee to reconsider, even though it is 21 years old, is the autism strategy of 2001. I have included a link to it in my submission.

The autism task force report is so important because it had contributions from a number of experts from Ireland and from other jurisdictions comprised of parents, education and health professionals, advocates and researchers. There was oversight from the head of the policy research unit in the faculty of law at the University of Galway. Its remit was to provide a framework for the future development of a comprehensive and appropriate structure for education and support for this hitherto marginalised and misunderstood population.

It covered everything the committee has been discussing but it is 21 years old. It is like the Education for Persons with Special Educational Needs, EPSEN Act; it promised an awful lot and delivered very little. Other jurisdictions have taken from our task force’s work from 21 years ago. That is very sad. The language in Irish policy is used to both give and take away services and resources. For example, terms like “care needs” and “access to" are usually misinterpreted.

However, the second part of my submission is a bit more positive. I do not want to be negative because a lot of what the committee has heard about what is happening in Ireland is negative and that is not the complete story. I want to be positive and share the great work that we are doing at ACE in UCC where we create bespoke courses, from eight weeks to two years, to educate, empower, train and meet the needs of the autistic community and their families, as well as of industry to create employment for adults with autism.

Our approach is interdisciplinary and our key philosophy is to provide opportunities in lifelong learning for all adults irrespective of age and previous educational achievements. Our ethos is of equality, diversity and inclusion for all. These underpin our philosophy, our learning objectives and outcomes. Our courses are built for diverse adult learners. Our staff adopt the correct approach needed to enhance adults’ learning so that all students may have a rewarding educational experience.

Most of our programmes have buy-in from the communities that we work with. For instance our diploma in autism studies was created by autistic adults in conjunction with academics who were either also autistic themselves or were the parents of children or adults with autism. Some of the relevant part-time courses are the diploma in autism studies, the first autism studies course in Ireland, which is level 6-7. Parents, SNAs, lecturers, disability resource and access officers were all in the same classroom working and learning together. It is one of the first and only courses that does this in the country. It awards a university qualification at the end. The certificate in professional development in neurodiversity in the screen industry with Screen Ireland is first of its kind anywhere. I have been invited all over the world to speak about this course. That is how innovative it is. We are the leaders in this area. There is a certificate in professional development in advocacy, a pilot in neurodiversity in human resources, which is the first of its kind in Ireland, and pilot in well-being co-ordinator with Screen Ireland, the first of its kind in Ireland, also incorporates everything we have learned from our autism courses. These courses are designed to create a culture in which everyone has the opportunity to thrive and participate in life, industry and leadership. We are leaders. We are at the forefront of this. People ask me why we are doing this in Ireland but why should we not do this in Ireland? Why should we not be proactive? Why should we not be the leaders in this area? I am sick, as a parent, of hearing about best international practice. We have a very different culture to the rest of Europe. The rest of Europe was out colonising the rest of the world and the Irish were getting colonised. Why should we not be the leaders in this area?

One last thing that I would like the committee to consider is the conversation that I have seen across so many times across everything the committee has been listening to, which is that getting funding for our students is our biggest issue and the biggest barrier our students face. We are a self-funding department in UCC. We are not like the rest of the university. Many students do not fit under the social welfare models of grants as many can be carers who are not in receipt of social welfare or are freelance workers whose finance is not stable or both. Our courses do not fit the Springboard model because we are teaching people to be better leaders in their communities and not to advance their employment opportunities. There is no fund if you want to improve your knowledge to help others. If we want more training on autism, we need to fund it and be innovative in how we do that. This is the biggest barrier for the people that I represent. As a parent, I want to see better educated workers and I would like to be part of that solution.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Ms McSherry and Dr. Crawford for their contributions to the committee. I know they were listening to some of the earlier session, at least. One thing common to all of those who have presented here is the amount of knowledge they have acquired out of necessity because the services and supports to support their children were not there. I commend them on the work they have done. The amount of information they have given us is immense. Do either of our guests see a solution to what is happening at the moment? The parents outlined the very limited supports through the CDNTs and a lack of appropriate class places for their children at preschool, primary and secondary school. They did not go further afield but there is a problem after post-primary. That is a cliff edge for many parents who say there is almost nothing there for autistic people at that point. Dr. Crawford said it should be based in education. We need to expand on that. As she said, there is no joined-up thinking within the HSE. Somebody needs to grasp this and address the problems because as everybody says, early intervention is key and many of these children are not getting any interventions at an early stage or a later stage. I know that parents are so worried for the future for their children. Do Ms McSherry or Dr. Crawford have further ideas on how to expand what they are doing and the awareness they are creating? It needs to be expanded across the country into every field because we see employers not willing to employ autistic people. It is a lack of awareness or education about what autism is and what supports someone in their employ needs, for example. I am interested in any further thoughts or anything that we as a committee should propose in our report specifically around expanding knowledge and awareness of autism.

Ms Eleanor McSherry:

This is what we are doing at ACE where we are looking at the gaps. We have the expertise because a lot of our staff, 70% of them, are autistic themselves. The majority are women and a lot have had late diagnosis. My son is 24 years. He was the perfect example of early education and intervention. He was diagnosed at four years old and he got every single resource that he needed going into school. It was before the cuts of 2006, which was my first time addressing a joint committee here. I was here in 2006 saying exactly what these parents are saying today. I do not know if that is a good or bad thing. But once you went to second level, it was as if no one remembered. I had the same reports. Every transition you have to have the same reports and the same conversations. That has never changed in the 24 years. I have been doing this for 20 years. Like Dr. Crawford, I have been here a lot. We are changing the narrative whether people like it or not. Whether or not there is change at government level, we are out there and we are making those changes ourselves because we see the detrimental effect it has on our children. But we have to think about what we have already put in. It is like parking on footpaths and people ask why there is not zero tolerance? Why do we not apply the laws that we already have? Why do we not use the information we already have? We had it in the EPSEN Act and the 2001 task force report. That is 21 years old. The same conversation that we are having today was happening then. Why was nothing really implemented? We have the knowledge, expertise and hopefully we now have the will to do it; why are we not doing it? We are waiting for the politicians. As Dr. Crawford and I have said we are not going to wait. We will just go out there and do it and we will change minds. I have had conversations with the European Broadcasting Union to be its keynote speaker: an Irish person, mammy and carer. Ten years ago I would never have expected to be in that place but I am going to spread what I have learned. We need to have that. We need to have more of these conversations but also need action. These conversations have happened since 2001. We need action.

Dr. Susan Crawford:

I absolutely agree with Ms McSherry. It is about deciding to say that we will be the change that we want to see. I see it here locally in County Clare. I have just started offering autism awareness understanding training in my own kitchen. People started coming here in the evenings and putting up their certificates in their homes, businesses and so on.

Dr. Susan Crawford:

-----in the past year, education boards around our communities having sensory kits available in public places such as lifeguard huts, churches, community centres etc.

We have started making the changes from the ground up. People know, when they identify when there is something different or when something is emerging for a preschooler who is not engaging with other preschoolers, that they need to intervene, and the earlier and clearer the diagnosis, the better. Only yesterday, I was speaking to a GP who was in tears telling me he could not access private-diagnosis psychology reporting. Again, it has to meet the exact criteria of the HSE psychologists, which nobody can access.

All those issues need to be addressed. The top-down issue needs to be shuffled and shaken up and, equally, from the bottom up, we need to start getting stuck in early on. I always tell people when I am doing training that they should not wait for a diagnosis but rather get down on the ground and start engaging with their child, and it is the same for teachers in schools. If they notice that a child is not able to communicate, they should start using pictures and implementing some type of intervention rather than leave him or her alone. Every week is a week that cannot be gotten back. It is never too late to learn a new skill, but we should not allow somebody to have to wait weeks, months or years for an intervention.

The needs of autistic people change all the time. More than 30% of our population have a learning disability, so these long-term needs will evolve and change. I specifically gave our case study as an example. This is a young man with a diagnosis of autism, a learning disability, speech and language disorder and epilepsy - you name it; it is out there - but that is not unusual. He is entirely unique. Nevertheless, we had to go each step of the way and search for expertise somewhere else. It was very challenging. The HSE was not opening its arms to me and saying "Well done, this is fantastic". I had to battle every step of the way to implement simple change and pay for it privately, bringing in those people, even though public psychiatrists, nurses and so on were sitting in on talks about catatonia of autism because they did not know what it was.

All those issues need to be addressed. I always think of how quickly the smoking ban was implemented in this country and how people stuck to it. If you want to be the change you want to see, you can do it and that is the bottom line. We can talk about it forever and we are so right. Why do we have to wait for somebody to take a case to say we have to do something about A, B or C? If we implemented change as it was needed, we would save a fortune for the Exchequer, aside from anything else, if that might motivate legislators. There are so many simple interventions that, if adhered to and implemented on time, can make the difference, and that is what I find most frustrating when I hear ongoing stories. I have travelled this journey since 1996 and, for goodness sake, 27 years later, we are still here talking about what we do not have. There is something seriously wrong.

Pat Buckley (Cork East, Sinn Fein)
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Our two guests are a breath of fresh air. With their opening statements, their honesty and their bitterness and anger, they have thrown it all on the table and there is not one point one could argue against them, but it is important that the evidence given at these committee meetings goes on the record. Dr. Crawford spoke about a pilot project. Why has that not been replicated anywhere else? Someone made the point that we are a reactive rather than proactive society. I am black and blue from stating over recent years, including in the Dáil Chamber, that this has been enshrined in the policies of this Government and previous Governments. We are not visionaries. Governments have been told repeatedly by the experts that something is going to happen, but then they wait for it to happen and wonder how it happened, even though they will have been told about it ten to 15 years or, in our the case of guests, 20-odd years earlier.

Ms McSherry's contribution was also amazing, outlining in detail a Pandora's box of courses and so on, which I will examine. I am acutely aware of the Assisted Decision-Making (Capacity) (Amendment) Bill 2022. I asked this question in the earlier session, and Dr. Crawford spoke about how quickly we implemented the smoking ban. Likewise, in the budget, excise duty on cigarettes and so on is imposed by midnight on the same day. She referred to parking on footpaths, a pet hate of mine. People do not understand that if someone has some form of a disability - I do not even like using that word - it is not always taken into consideration. As I stated at a meeting of a previous committee, when I was a member of my local council, we listened to all the stakeholders when we were designing the main street in my town. It was probably nine years ago. We covered only 35% of the streetscape, because we met resistance, yet that 35% won a European mobility award because we listened to everybody and engaged with them.

As legislators, what can we do in the here and now, not down the road? I love our guests' determination and drive on this to say they will not listen to the bull crap anymore. They are done with talking. Dr. Crawford referred to the pilot project, while Ms McSherry referred to the research and the courses that are available. What can we do as legislators, whether to the relevant Department or Minister, to say we have listened to all the experts - our guests and others - and ask why we cannot implement the changes now? If they say it is about funding, there has to be funding somewhere to make this an all-Ireland pilot project, whereby resources could be pulled in from the European partners or whatever, and to replicate that. What can we do in the here and now to drive this change? Ours is a very different committee. We are not playing politics. We all have a passion for the issue. I accept our guests will meet resistance. How strongly does the HSE resist change? I am well aware the idea of "It's my way or the highway" is ingrained in the culture.

Dr. Susan Crawford:

I thank the Deputy for the question, which is, of course, entirely unanswerable at this stage. My view is that we have to have a legislative commitment to change. We should stop talking about it and say we are going to implement the following changes in the legislation, outline them and on we go. One thing backed up by research is that if schools refuse to take autistic children, it means the buy-in is not there from the top down. That is where we need to pull back a step and start educating educators on what is important and what is real inclusion. We are good at firing out these words and we are very lofty as researchers and lecturers, going all over the world giving speeches about various subjects, but implementing change is very different, as in being the change. I have often heard lofty conversations, lectures and keynote speeches from people talking about inclusion, whereas their own departments are not always so inclusive. It has to be an inherent, philosophical sea change from the top down and the bottom up. I see locally that if it is put to ordinary people on the ground that they can come and learn about autism or about our way of understanding and being, they will say all they want is to be told. I have encountered this time and again.

The same is true of working from the top down to get teachers to buy in. Of course, it has to go back to initial teacher education. When I was at University College Cork, I conducted a study looking at initial teacher education and educators' ability, knowledge, skills and so on to accommodate students with disabilities in general or students who are autistic specifically, and they will scream about how they have no ability to do it properly. They get whistle-stop tours through the subject in undergraduate education, and it is similar in postgraduate education unless the person tries to go deep into the issue as Ms McSherry and I have done. Education is huge. We need to back in there, strip it back and ensure it will be part and parcel of any educational process that autism is clearly specified to be addressed.

We are talking of one in 60, at least. The Centres for Disease Control and Prevention in the United States speaks of about one in 54 of the population being autistic. I would say Ireland is not far behind that, in reality. It is about looking at it and saying that we will be the change we want to see, and starting in those areas such as education, health, and so on.

On the HSE, where would one begin? I really mean this. There is no joined-up thinking in the HSE. I brought that expertise over from the US around the whole area of catatonia of autism and I now have any number of neurologists contacting me asking how to go about getting something similar in other pockets of the country. The HSE should be doing that, not Susan Crawford as a parent. There is so much wrong. The HSE does not even look to know what is going on here local to us that we have set up and which they could be replicating around the country. There is no joined-up thinking in the HSE. There is a model of good practice here in the mid-west that has not spilled out around the country. That is just a working example of the total lack of joined-up thinking.

Deputy Tully asked if I believe the education setting is ideal for having multidisciplinary team input. It is a very definite time and day and there is scope there to plan and implement. The other side of it is that anything we implement must be joined together so that the occupational therapist is working with the teacher, and the physiotherapist and speech and language therapist are working with the psychologist and so on, so we are all singing from the same hymn sheet. If one is going off to a private therapist here and a private professional there and dipping pieces in, it is very hard to bring all of that together. If all of this expertise is coherently in one spot it makes all the difference. This is why, back in the day, our unit just took off. It had everything going for it just so seamlessly.

I cannot speak strongly enough about the importance of movement. If autistic children are learning movement skills from an early age it can be a lifesaver in terms of managing their behaviours and keeping them regulated. Movement breaks throughout the day can mean somebody is not coming home and attacking their parents or whatever is going on in many houses, as we know. The reality is that these types of measures need to be implemented and put in place in schools, and ingrained in the educators as well. Back in that time, two experts Dr. Rita Jordan and Professor David Sugden came into the unit to work with the staff. Ongoing workshops were the order of the day before any Croke Park hours or anything else. It was all part and parcel of what that whole process was. We knew a bigger picture had to be filled and we knew that the workshops and the continuing professional development had to be ongoing. There were all of those little steps that can be implemented.

As legislators, I say that members must hammer on the door and be the ones who actually draw up the change.

Ms Eleanor McSherry:

It is a tough question. As I tell the students, I bring them down because the rest of the course is very positive but I always get stuck with the module that is very dry and very boring and very sad. From an educational point of view, I supervise Master's students in education in the professional Master's in Education at Hibernia, for post-primary and primary. A lot of the students have a huge lack of knowledge in this area but they want to understand. With regard to the training and the resources in the longer term I believe it will cost a lot of money to fix the problems that are there but it is an investment in our future. We had it 21 years ago and we chose not to use it. There have been Bills and strategies that were just left by the wayside. I understand that the State is limited in the financial context, but we would be creating a financial burden at the other end of it if we are turning out teenagers from second level education with serious mental health issues and suicidal ideation. We need to address that issue. This is what we are creating by not being proactive and grabbing the nettle.

Many of the teachers that my son came across were very positive. It was the system that was the problem. The teachers were willing to meet us halfway and willing to work with my child. I do not have a sad story in that respect but for him there were barriers there in the system. The State does not recognise hidden disabilities in our resourcing. It is not recognised. My son had double scoliosis in his back and autism. I brought in all of the documentation yet I was told that he was to go to the third floor for his locker. One year into the school year I found out that there was a lift, but the lift was for children with physical difficulties. What is double scoliosis? I do not understand that.

I also come from a medical background and I understand the monolith of the HSE. The HSE is an intransigent group that will never talk. I was told by my psychologist "There is the Department of Education and there is the HSE, and never the twain shall meet." That is the wrong attitude right there. We have the legislation but we just need to have zero tolerance on what is happening. We need to implement what we have already looked at, and we have looked at it for 21 years. We are not creating something completely different. We have a lot of the skills and we already have a lot of the material here. If we actually had the political will to follow through then change would happen. I see my students who are empowered and who are coming out of their course with attitude change. I have autistic adults in my class who are now becoming advocates for the community. I did that and I am proud of that, but I did that without all of the members. I did that because I wanted to make change and because Dr. Crawford wants to make change. We want the Government to fund this properly, to think about what has already been done and to look at what is there. There is a plethora of information already here. This is what I am asking the committee members to do. I ask the members to be proactive. We already know what needs to be done and we have heard it here, but we have been saying it for 21 years and we are not waiting any longer.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Go raibh maith agaibh. I am afraid to speak at this stage. That was very clearly put and in fairness to Deputy Buckley beforehand, he said what needed to be said about Dr. Crawford and Ms McSherry and the fabulous work that is being done.

Dr. Crawford spoke about the necessary legislative answer. We are aware of the whole issue in relation to schools, which is the preparatory work combined with the big stick, if necessary, to ensure we have the system our kids require. We could have all of the legislative pieces and that would not matter unless we do the work to ensure we have the capacity and the resources. This is accepting completely that we have a broken up system with silo answers, and that we do not deal with citizens from the cradle to the grave and all of the various pieces within that.

I wish to speak about the movement aspect I get the notion; if our Turlough was not given movement breaks and regulations then we would have all sorts of incidents. I heard talk before about movement and the release of a particular protein. One often hears about magic bullets with regard to movement with horses but the idea that it is just movement is hard to believe. The way it was sold to me was that the release of this protein can almost bypass, for a period of time, the difficulties that autistic people have and can facilitate learning. Perhaps the witnesses could give us some insight on that. It is probably an unfair question but that is the nature of the questions I can ask.

Ms McSherry spoke about the autism strategy of 2001. Can we put down, straightforwardly, exactly what we are talking about here and what are the necessary pieces that are not in play at the minute? Perhaps it would be difficult to answer in just three minutes but will Ms McSherry also explain how these courses work? I find the whole idea very interesting. It is that part, even if they get beyond secondary school, that is absolutely necessary for a whole swathe of people.

Ms Eleanor McSherry:

At the autism taskforce in 2001 the strategy was written by the top experts in their field internationally and nationally. It was not only academics but also family members. This is why it is so soul destroying that I am in here 21 years later and very little has been done on it, even if over the years there has been a lot of will to implement it. It is a very meaty document. I could not even begin to outline it but there are a lot of very good recommendations in there. Some of them have been touched on such as intensive support programmes, ISPs. Every single strategy or policy that has come after has always come back to that document. We already have it. It is here and basically it was shelved. There is a lot of material in there.

The autism studies course we do is a two-year course. We have a waiting list. We are evaluating it at the moment and we constantly evaluate it. We give an online offering and we give an in-class offering for it in Cork and in Limerick. Our current waiting list to go onto the course is 120 people, but we only have 60 places. It caters to special needs assistants, teachers, disability officers, HSE nurses, intellectual disability nurses and, most important, parents. The fantastic thing about it is that it is not a postgraduate course; it is not disciplinary, it is interdisciplinary. The conversations in the room are fantastic because parents are learning from teachers and teachers are learning from parents.

Everybody comes out with an attitude. When I started teaching it ten years ago I was a lecturer on policy practice, law and representation and I came in with a position that there should be no institutionalisation at all but then from listening to intellectual disability nurses, people from Enable Ireland and people from Inclusion Ireland I heard that there is a place for every kind of intervention because some people will have difficulty living in the community. Baroness Warnock coined the term social inclusion and said that everybody should be socially included but she came back in the early 2000s and said that without resourcing and funding we are throwing people to the wolves. That is the difficulty with it.

The autism disability study is a fantastic programme and I am very proud of it. I am proud of our students because they go on to become leaders in their communities. We are empowering parents, who are able to stick up for themselves. That is why we created the advocacy course, which is a five-credit course that is a follow-on to that for anybody from youth and community work, mental health in the community, and we have a higher diploma in inclusion. I have a parent who is doing a master's in University College Galway on advocacy and international advocacy and she came into us as a carer who was never in education because she could not be in education. She has scraped together the funding to do this. I am very proud of the work we do in ACE. We are 75 years doing it and we are getting bigger and better all the time. I was told the other day that we are the world leader in this area. For Ireland and for us to be at this meeting and to be able to say that makes me proud of the work we do.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Fair play. That is brilliant.

Dr. Susan Crawford:

I thank the Deputy for the specific questions on movement. We are going back to the protein and that is an interesting point. We know that movement enhances the formation and healthy use of a thing called gamma-aminobutyric acid, GABA, which is important for regulation and mood enhancement. Interesting studies have been done to look at the effects of movement against the effects of electroconvulsive therapy to enhance feelings of well-being and reduce anxiety. It has been found that if you get high levels of GABA that has a positive effect. That is why we are driving an agenda on movement to reduce anxiety and all of that. We know that movement enhances the secretion of those hormones like serotonin and dopamine, etc., which are necessary for normal brain function. Equally they are mood regulators. For any number of reasons, movement is key.

The other thing we know is that our population, including children and adults who are autistic, do not naturally develop movement skills. They have to be taught how to hop, jump, kick and throw. They often have to be taught how to run as well and they have to work on balance and co-ordination. I am involved in an international research group on movement, and that work will probably be included as part of the diagnostic criteria for autism over the coming years. It is key that we look at movement from early on and we are looking at videos of babies who are later diagnosed as autistic where those movement markers have been picked up early on when they are babies and on into when they are toddlers. Movement is key so if we could get that piece into the pre-schools and primary and secondary schools and drive it in a real and meaningful way in terms of proper movement breaks it can make a difference. From our roll-out of training across the country I can say that there is big buy-in for that.

What was the other part I was going to address?

Ruairi Ó Murchú (Louth, Sinn Fein)
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I imagine it related to Dr. Crawford's course on the work she was doing. I started with a breakdown of what was wrong but it was a sum-up of what Dr. Crawford had already said, far more eloquently.

Dr. Susan Crawford:

Our get out and active courses are all around. We start off with autism awareness, understanding and acceptance and work through things like sensory integration and all of that. Then we bring you through to how you develop movement skills for autistic children and adults. That has just gone for review to Liverpool John Moores University, which is looking to include it as a postgraduate master’s programme.

Like Ms McSherry is saying, we are all about empowering people to do the best they can with what they have. Autistic people particularly need to be empowered to participate. That is a big part of this. My son has every label going and he is after running the best part of 3,000 km up the Wild Atlantic Way in 2019 so there is no reason people cannot develop and be actively engaged in everyday life. It can make all the difference in social and emotional communication and in health-related benefits. There is so much more to be gained by developing home movement.

Ruairi Ó Murchú (Louth, Sinn Fein)
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Those are the most positive answers I have ever got anywhere on this campus. Gabhaim buíochas leis na finnéithe.

Micheál Carrigy (Fine Gael)
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Dr. Crawford speaks about movement. My son goes to horse riding and does occupational therapy while horse riding. The benefits are fantastic. His senses are opened up and he is able to take in the therapy more quickly. That needs to be expanded. I welcome Deputy O’Donnell to the meeting.

Kieran O'Donnell (Limerick City, Fine Gael)
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I am not a member of this committee but I thank the Chair for allowing me to participate. I know of the work of Dr. Crawford and more particularly I know what Ms McSherry does on the ground in Limerick.

I want to bring it back to what I do as a Deputy in Limerick city. We deal with a lot of children with autism. What should be happening? I know the witnesses are going back to the autism task force report from 2001. We hear a lot that early diagnosis of autism is important for getting into the services and so forth. If there were three things the witnesses would like to see being implemented now that can be done under existing legislation, what would they be? I am looking at it from the perspective that we have parents coming to us to get a diagnosis, which is important. Dr. Crawford has made reference to children in the autism units in schools. Those are coming on stream but they were not on stream for a long period.

I mention educating across the spectrum in terms of education and the educators. I know this is a hard question. The Chairman has referenced it and many here will be aware that the St. Joseph's Foundation has a horse riding residential establishment and horses have an enormous impact, as do dogs and animals in general, on people with autism. What would the witnesses like to see happening, including around the skill sets people with autism have? I know I am asking a direct question but what are the three things the witnesses would like to see being implemented now? I will start with Ms McSherry and then I will go to Dr. Crawford.

Ms Eleanor McSherry:

If there were three things, the first I would mention is that there should be no waiting lists. When you get your diagnosis you have to wait a massive amount of time and that has never changed. I also mention proper resourcing, training across the board and a multidisciplinary solution for a multidisciplinary problem. It is not just the HSE, but also the training.

We should remember that at the end of the day, in order to make change we need to have everyone buying into it. As I said, I trained teachers and so has Dr. Crawford and I also come from a medical family. There can be an issue every time a change is brought in, like when we found out this week that all of a sudden principals will be doing assessments of need. I have seen that in the Twitter sphere, which has gone crazy with the news. We cannot have this swipe-of-a-pen attitude. The catalogue of disasters we have involves reactiveness like that. We need to be able to look at a multidisciplinary solution that has buy-in. We must have all of the people at the table and make the decision. There is no point in saying we will have an autism unit in a school if the teachers in the school are asking where it will be put and who the teachers who will go into it are. What you do in that case is turn the teachers against you and sending the parents into that atmosphere is a nightmare. I had that when my sons started in secondary school and I gave them all that information but they did not have enough SNAs for the 16 boys with autism they had in the school.

My son had a full-time special needs assistant, SNA, whose hours were divided, and I ended up with a child who was on suicide watch. I do not want that situation to happen to any other parent, but I have heard of it happening ever since. As I said, once the waiting lists, resourcing and all of these are resolved, it will solve all those multitude of problems, but we need to have the buy-in. There is no point in us all demonising the HSE and in putting them on the outside of the conversation. That is not going to work. Do not put the teachers on the outside of the conversation. Any teacher I have ever met has only had the best wishes and determination for their children, no matter what. The Teaching Council of Ireland has that attitude, but it is very far removed from the classroom. That is what is what I am saying. Though it might be simple, it will cost, but it is worth it for the futures of the people who I represent.

Dr. Susan Crawford:

Again, I echo what Ms McSherry was saying. Education is key, as is a wholistic approach to education. I am not just talking about educators, but about starting with educating parents by having appropriate expertise coming into the community and working with people. We were doing it here in Clare in the late 1990s, where we brought in the picture exchange communication system, PECS, teachers and all those experts who were brought in together with parents who were fundraising to get things up and going. This was so that people could understand what was available to them.

Equally, we have to educate legislators, as well as staff in the HSE who are not necessarily coming with a background in the area of disability but who may be working in that area. There is a greater piece around autism, which is that we must have respect for and understanding of autistic communities. This is not just a matter of one type of a disability, but it is a way of being. The autistic communities truly believe that this is who we are and this is our piece. People need to be educated on all of that. Education is far greater than just the educators. It is so much more and involves a wholistic approach to education. I always believe in the business of top-down and bottom-up. We have to work with the people on the ground coming up and, equally, we have to be willing to make changes from the top-down. That mindset has to change across so many different Departments.

Kieran O'Donnell (Limerick City, Fine Gael)
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I have a final question on that. Is Ms Crawford aware of the co-ordination at the moment at interdepartmental level and the HSE, in the Department of Health, the Department of Children, Equality, Disability, Integration and Youth and the Department of Education? What is Ms Crawford’s understanding of the co-ordination on autism? She speaks about education, but one must have a process to drive education. It is too abstract otherwise. Is there any unit of which Ms Crawford is aware in any Government Department that is driving that education?

Dr. Susan Crawford:

Not that I am aware of, no. That could be one of those gaping holes that we look at and ask why there is not a space that looks at this, that grasps the nettle and that brings these Departments together to work together in that regard. There is not one of which I am aware, no. That is probably why it is so disjointed.

Interestingly enough, the Deputy just asked if there was any unit within the disciplines of education and health, etc. If there are pockets of the HSE that do not even know what is going in each other’s areas, we have a big body of work to do here.

Kieran O'Donnell (Limerick City, Fine Gael)
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I take that point. We need a process. When dealing with Departments, in my opinion we will not get a result unless we have a process. It is a matter of finding that process.

Micheál Carrigy (Fine Gael)
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Would Ms McSherry like to answer that question?

Ms Eleanor McSherry:

This is in legislation already in the Disability Act 2005, which took an interdisciplinary approach. As I said already, I was told by a psychologist that the HSE is here and the Department of Education is here. Until they get over themselves everybody will be terrified that they will lose their funding or that something is going to be more important than them. That individualistic thinking has no place in this country anymore. If we want diversity and inclusion for everybody, we have to stop thinking along the lines of, “everybody is coming in on my patch”. That seems to be the attitude.

We see this a little bit in third level education, where interdisciplinary work is changing things, and we have changed our attitude. There is fantastic stuff. I have young people coming out. There are 1,500 students who go through third-level education who are neurodiverse and 600 of those tend to be autistic. My own son is doing a diploma in archaeology through NUI Galway, whereas I had been told that he would never do his junior certificate. That is down to me saying that I am not taking that on the chin, rather than the work of the educational system. There are ways of doing this and we are doing it although everybody else seems to be able to do it. Why then can we not do it? Some of the Departments have to buck up, get over themselves and get over that bridge fast, because what will end up happening is that more autistic people will be at this table, sitting where the committee members are sitting and they will force things, and nobody wants that.

Micheál Carrigy (Fine Gael)
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That leaves me as the final speaker. First, Ms Crawford’s comments about top-down, bottom-up is what this committee is about. We want to hear from people and from parents to be able to form a bottom-up proposal to Government so that when we produce our report at the end of next March, there will be recommendations that will make change. It is incumbent on us as public representatives, as well as on whoever may follow us as the years go on, to make sure that it is a living report; we must make sure that all of those recommendations are implemented over as short a number of years as is possible.

I compliment Ms McSherry in particular on the course that she is doing and the fact that, as she said, it is empowering parents to be advocates in their own community. We need to get a better understanding of what autism is among the general public. We, as committee members, as well as individuals like me, as a parent, are still learning. It is important that the general public knows and accepts autistic people in the community and that we make sure that we put the supports in place.

I have a question surrounding Ms McSherry’s reference to the course as self-funded. Where is the blockage to that course being funded? Could she expand on that?

Ms Eleanor McSherry:

It is a grey area. I do not know if the Chair knows this already, but if one applies for the grant for education, it has to be for a certain criterion or type of course. If it is a short course, they can forget about it because they will not get any funding. It has to be a diploma or a certificate at a level 6, which is what our course is. They have to apply for it, and they will get the funding after they do the course. Therefore, the parent has to come up with the funding before they start. Our course at the moment costs approximately €1,200, which is a lot of money for a carer. For a carer who may be working a couple of hours, it is a lot of money, especially in light of the way finance has gone.

We are self-funding, therefore, all our courses have to be paid for. That money pays for the lectures, the marketing and everything. We are therefore not like the rest. For a student who is going through education as an undergraduate, their fees will be paid partially by the Government, but we do not get that kind of funding and we cannot apply for it because we are not a charity. We are therefore in a grey area within the funding mechanisms that are there for carers, if they are not on welfare and are not full-time carers.

I was not a carer and was €50 over the threshold so we never got carer’s allowance. I went back to further education, and I funded myself through that as an adult learner. I did not go into education through the traditional model. I found that we just made do. That is what we had to do. My husband was a teacher, so we were supposed to be in the "higher-paid echelons". That is what I am told every day, that we are in the middle classes, and that we are funding the whole country. That used to disgust me because I never asked for anything. I never asked for anything, and I was never entitled to half of anything. I did get a domiciliary care allowance, before the committee members go checking and out me.

It is important that we recognise that we might not get job advances, but it is a springboard if I want to get another job. However, it is a matter of whether I want to improve, and if I want to be aware of training for neurodiversity, like what we are doing for the screen industry. While the screen industry is paying for that, it is paying for 20 students, but let us say that there are 60 students. We have an Irish student who is living in America, and who is a director. He wants to do our course from America. We have created the course so that it is recorded, so that he can come in at any time because we need to see more people who are autistic on our television screens. We need to see representation because what we see on our screens is an issue that I have not seen any of the committee members speak about so far.

We have only ever had two autistic characters in the history of Irish television. If I cannot see somebody like myself, how the hell am I going to walk around in the community? I have seen loads of documentaries and sad stories. I have seen it in the news. That content is there but we do not have content in drama or autistic actors and directors. They are there but they are afraid to say who they are. That is why we are trying to change that narrative. We are educating within industry. We are now starting a course for human resources for people such as managers, in particular in the pharmaceutical industry, because they know people who are autistic or neurodiverse are working there. They are already employing them but these people are leaving the job rather than staying in it because the conditions are so bad for them. To be able to change the culture we have without outing anybody is the way to go.

Micheál Carrigy (Fine Gael)
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I thank the witnesses for coming here today. I compliment both of them on the work they have done in the past 26-odd years. As Ms McSherry said, it is unfortunate that the same issues we had 26 years ago are still here today. As I said, we hope our report will effect change. That this committee is in place has already effected change, be it through extra supports going into third-level education or section 37 with regard to schools. Earlier in our meeting today, the committee issued a resolution with regard to the summer programme. A report will be laid before both Houses of the Oireachtas to debate the matter on behalf of all the members here. We want to see change made. That is a commitment I can give the witnesses on behalf of all the members. It is something we are committed to doing jointly to make those changes.

I thank the witnesses for their contributions. It has been extremely beneficial. I wish them well in their further work. If there are any recommendations etc. they wish to put forward to this group at a later date, I ask them to do so through the clerk to the committee. As I said, all that will form the basis of our final report next March. That concludes our business today. Do either of the witnesses wish to make any final comments?

Ms Eleanor McSherry:

I thank the committee for having me here today. As I said, it is 20 years coming. I have been at many different meetings and I hope the commitment is there. I met five different Minister's with responsibility for education who shook my hand on the way in and told me everything was going to change and then proceeded to cut a lot of the resources. I hope to God the political will is there now. I will pray for members; I will light a candle.

Micheál Carrigy (Fine Gael)
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I thank Ms McSherry very much. Does Dr. Crawford have a final comment in the remaining 30 seconds?

Dr. Susan Crawford:

I want to say a huge thank you to everybody for the invitation to come here today. I am positive and optimistic, and I do believe we will see change. It does mean we all have to travel this journey together, however. That is the big piece too. I will be happy to make further recommendations to the committee as well.

Micheál Carrigy (Fine Gael)
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I thank Dr. Crawford very much. That concludes our business. The committee stands adjourned until Thursday, 27 October at 12 noon when we will resume in private session.