I welcome everybody to Leinster House and thank them for being here. I thank the Cathaoirleach and the members of the Joint Committee on Autism for the work they have done since March of last year. The import of this meeting being held in this Chamber should not be lost on anybody. It is a rare occasion that we have a committee sitting in Seanad Éireann. As a Member of the House and a public representative, I must say that this committee's work is critical for a future roadmap and recommendations that will be made to the Government, which we hope will then act. As someone with a long connection with the Cope Foundation in Cork, I understand the importance of matching intervention with diagnosis and assessment. It is also important that we support and work with all our guests to ensure we put in place not just a scaffolding of supporting structures but real supports. This meeting is important and we are happy to have it in the Chamber. I thank the members of the committee for being here and for their work. I thank the committee Cathaoirleach, Senator Carrigy, the clerk to the committee and the staff and secretariat of the House. I will hand over to the committee Cathaoirleach, Seanadóir Carrigy.
Services and Supports Provided by the State for Autistic People: Discussion
Cathaoirleach an tSeanaid
I welcome everyone here today. I thank the Leader of the Seanad, Senator Chambers, and the Cathaoirleach of the Seanad, Senator Buttimer, in particular for allowing us to hold our meeting in this House. As the Cathaoirleach of the Seanad said, it is unusual but it is apt in the context of the work we are doing. Our guests, as parents and advocates, have the opportunity to come into a Chamber of Government and air their concerns and views.
Before we start our business, I will read some formal notices. All those present in the room are asked to exercise personal responsibility to protect themselves and others from the risk of contracting Covid-19.
For the information of our witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or of those who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. They 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 the person or entity. Therefore, where statements are potentially defamatory in respect of an identifiable person or entity, witnesses will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
The purpose of this meeting is to have a round-table discussion on the public concern in respect of the services and supports provided by the State for autistic persons. I welcome our guests. They include parents and representative groups from around the country. The committee has discussed autism policy with Ministers, Departments, State bodies, academics, trade unions, professional bodies, parents' representatives, charities and autistic persons themselves. We believe that autistic persons and their families must be central to any conversation relating to the provision of State services to people on the autism spectrum. It is imperative that people on the spectrum from all over Ireland are given the opportunity to have their voices heard and to discuss their experiences in Ireland today, and how we can make things better. Therefore, as a committee, we made the decision to hold this round-table discussion on the public concerns and on the supports provided by the State. The committee hopes that this opportunity will enable members to hear at first hand how autistic persons can be empowered to lead a full life and take part in Irish society. We are looking forward to hearing from the witnesses about what services and supports should be provided to autistic persons. We also want to hear how we can remove any unnecessary barriers that may be preventing autistic persons from accessing the vital services and supports they need and to which they are entitled.
We will meet parents' representative groups from 11 a.m. until 1 p.m. At that point, we will have a lunch break. The press officer for the Houses of the Oireachtas will be there to take some informal photographs. We might try to get a group photograph on the plinth of Leinster House before we go for refreshments.
At 2 p.m. a number of self-advocacy persons and groups will be here and we will also be joined by Adam Harris from AsIAm between 2 p.m. and 4 p.m.
Speakers may wish to consider some of these key issues when they are speaking: access to assessment and intervention; issues with assessment and intervention; education, including limited effectiveness of special classes to promote full inclusion; employment, including lack of employment supports; adult diagnosis and access and implications of that; and the need for autism-friendly buildings throughout the country. I want to thank to Ms Roisin Deery in the Houses of the Oireachtas who is doing a tremendous amount of work to make our Parliament one of the first in the world to be an autism-friendly parliament and welcoming to people of all disabilities and those on the autism spectrum. I thank her for the work she has been doing on that.
I will outline how the meeting will run. I will ask each group to make a statement. They will have up to five minutes. I will then give an opportunity to members to put questions to any specific group. If people feel they want to come in on any issue, just indicate and we will let everyone in. This is their opportunity to have their say on what they feel that we as a committee will put in our report, which will be published on 1 June. It will be laid before the Dáil and Seanad and will put forward proposals for changes that we feel the Government needs to make to ensure we have an inclusive society. If I missed a group, I apologise. My notes are slightly wrong. I call the Cavan-Monaghan Parents Committee first.
Ms Linda Whitmarsh
I will speak on behalf of the Cavan-Monaghan Parents Committee. I am just an ordinary mum but I have two extraordinary children. My eldest son is aged 11. He was discharged from the children's disability network team, CDNT, when he reached six. We waited five years for an assessment for him of dyspraxia. Those were five long years where he regressed and we have to work harder now to make things easier. Five years is a long time for a child to wait for a diagnosis. In the interim he was diagnosed as autistic as well. He is quite mild. He is a lovely fellow. He is great. He is very formidable but waiting those five years has put a strain on him. If only had those services from the start, instead of waiting until he was six and then being discharged. That is five years of a child's life gone.
My other little child, Finn has just turned nine. Finn has cystic fibrosis. He has an intellectual disability and he is autistic. Finn is only speaking now. Up until last year he was non-speaking. The services have failed him and let him down. These are two extraordinary children who get by with all these challenges and do amazingly. Finn is such a happy wee soul and he sees the world in a different way. He leaves the curtains open at night so he can look out into the sky and see the moon and the stars. Just the way he looks at things would teach you but he only started speaking in the last year. Finn is nine and he has received three hours of speech and language services in the past nine years. Everything else has been private. We as a family, myself and my husband Ronan, have spent €15,000 in the past two years on private assessments for the kids and on services. I have had to stop working. I loved my job but now we are carers. We just get by. My husband is working. It is a struggle but you cut the cloth to measure because the kids are the most important thing. We cannot wait around for the services for them so we have to go private. Out of pure frustration, this time last year, in April, we formed a parents' committee to help everyone in counties Cavan and Monaghan because we knew we were struggling and we did not want to struggle on our own, and we did not want another family to have to wait all this time. Let us think of a nine-year old who was non-speaking; when he was eight he had only received one hour of services. When we formed our committee, he got two extra hours of services. He received a speech device. However, why do we have to shout or fight? It is so time-consuming and hard mentally and physically when you are looking after your kid and doing everything that you do for the love of your kid without having to fight, write emails to constantly ask, "Where is my child on the list?", or to say, "He's waiting". It is too long and too late. My biggest fear as a parent is that I have let him down because we have waited so long. We have done everything we can with our private services but Finn is nine and he is only speaking now. The likelihood of him being in residential services when he is older frightens the life out of me and sometimes I cannot sleep at night thinking about it. What if they had have go in earlier? What if he had been receiving regular speech and language therapy from the age of four and not just given a device? He was given an augmentative and alternative communication, AAC, device. We have our device so we were not entitled to speech and language therapy. He has received one hour of occupational therapy in the past nine years and that was only because the occupational therapist, OT, went into the school. I have been on numerous courses - someone would not be able to work with all the courses they have sent me on - but they have not seen my child and, therefore, it is not an individualised programme.
It is not just us. We have come together. We have a committee and a Facebook page of 110 people and all our stories echo each other. It is not just Cavan-Monaghan; it is everywhere. At the end of the day, there are facts. Last week, I got these figures from our CDNT. There are 670 children just in Cavan alone. There are two speech and language therapists, 3 OTs, 2.4 psychologists and 1.5 physiotherapists. That is 8.9 therapists for 670 people. How can someone get supports and services with that? There are 2.46 social workers, 0.8 of a family support worker and no dietician. We are just parents. We are just laypeople trying to help other people. We are not a charity. We are just advocates working together. Myself and my husband have come up with a way of how to solve this crisis. I will ask him to talk about the four points that we have discussed that would help end the crisis for us all today.
Mr. Ronan Whitmarsh
I am Linda’s husband and the co-chair of Cavan Monaghan Parents Committee. I will be very quick as I know everyone wants to speak and we are the first ones out of the gate.
We see four main pillars that, if worked on, would represent massive strides towards getting services. The disability services for the country, of which autism is a massive part, are completely broken. Therapies and services are completely broken. I do not think anyone today would actually say that when their child is getting services that the services are bad. There is nothing wrong with the therapists as far as we can see. The people doing the jobs are great when you get them. There has to be responsibility on the HSE to provide these services. The Disability Act 2005 falls off a cliff in respect of the wording after the assessment of need. There is nothing in the Act to state that the provision of services should be guaranteed to anybody in need of these services after they have gone through the assessment of need. Any lawyer could tell you that there is no legal responsibility for the HSE to ever provide any services. If you go to your solicitor and try to sue the HSE to get services, you will be told there is no case there because there is nothing in the Act to provide that.
Second, the Government needs to ratify the UNCRPD optional protocol to safeguard the future.
Our committee raised the third pillar with the Minister of State, Deputy Rabbitte, approximately six months ago. A trade mission needs to be sent abroad to try to recruit therapists for the Republic. We do not have the necessary number of therapists. When a parent asks the Minister of State or the HSE's head of disability services why there are no therapists and why his or her child cannot be seen, the parent is told by both sides – they have said this in the Seanad Chamber as well, so it is on the record – that there simply is not the staff. Therapists cannot be recruited. The Minister of State and head of disability services do not say the issue is down to money, but to being unable to get the staff. A nursing trade mission was put together in the 1990s, after which the first wave of Filipino nurses were brought to Ireland. They were brought to Ireland in much greater numbers than the number of speech and language therapists, occupational therapists and physiotherapists we are seeking.
Under the final pillar, something must be done at governmental level to provide more places at university so that more therapists are educated. There are not enough places. I believe there are more than 700 vacancies in CDNTS across the country. CDNTs cannot fill these positions. We need to push out more students. There is demand. I do not mean to keep referring to nursing, but the same thing happened in the 1990s when the number of people studying nursing at third level was expanded because there were not enough nurses.
These four pillars would help services. Everyone here is struggling. Everyone parent sitting in front of members today is drowning. Most are too exhausted to campaign and graft. Do members know how difficult it is to get in the media? It is incredibly difficult. There are some very helpful politicians. For example, Deputy Tully has been fantastic to us in Cavan-Monaghan. We need people to advocate for us. The Government has to do something. If this round table meeting can make recommendations, these four points have to be considered.
I am sorry for taking too much time.
I thank Mr. Whitmarsh. Next, I will call the Galway Autism Partnership.
Ms Máire Bríd Ní Chonghaile
I am the general manager of the Galway Autism Partnership, GAP. I am joined by Mr. Richard Taylor, chairperson of our board.
We are a volunteer organisation that was established in 2011 by a group of parents. We aim to give the autistic community of Galway a voice and to make a positive difference to individuals and families. Our vision is of a community that is accepting, understanding and inclusive of autistic people and their families and ensures their right to equal opportunity and participation. Our mission is to work to improve quality of life for autistic people and their families by providing advocacy, peer support, information, social activities, and training and education. Our values are empowerment, equality, excellence, inclusion, respect and partnership. Our members include our families, individuals, volunteers and board members and we are based in Laurel Park in Galway. While that is close to the city, we are a charity that supports city and county.
Some 50% of our members are referred through healthcare providers and organisations like Enable Ireland, the Brothers of Charity, the HSE and child and adolescent mental health services, CAMHS. Every day, we get phone calls from parents who, much like the couple behind me who spoke, are lost, directionless, frustrated and unsure about what to do. These are the stories that we hear every day.
A survey was sent to our stakeholders in 2022. When asked what one thing GAP could do to support families and make a difference, the main responses we got were: to promote inclusive activities for autistic people; where people were included, to break the stigma, as activities and engagement are separate for autistic people; to empower the community; to connect autistic people; to focus on families and family supports; and to plug the gap in service provision. That last is the main request made by our families, who are constantly in battle, on waiting lists and being met with closed doors.
The main issues facing families and individuals are the lack of access to timely and appropriate services and supports and the lack of a clear pathway to supports and assessments. Recently, I spoke to a special needs assistant, SNA, who told me about an occupational therapist who came into a classroom with a programme for a child. The therapist simply delivered the programme but did not actually show how to use or implement it, saying that that was not the therapist's role. I also spoke to a teacher who told me that there was a child in her class who had been waiting a long time for a speech and language therapist to come to the school. When the speech and language therapist made it to the school, the child was absent that day due to sickness. The speech and language therapist went ahead and had the meeting with the child's teacher and SNA and then claimed to have a full picture of the child despite not having met the child. These two examples are not the fault of the occupational therapist or the speech and language therapist. This is just the way things are. These are just the pressures under which people are working.
Inclusion and being a part of the community are issues experienced by people who come through GAP's doors. Parents also relay challenges in education to us daily: individual schools' capacities; places available in schools; and a lack of understanding of the schools' legal obligations.
As to how we as a charity plug the gap in services, we do simple things that make a significant difference, for example, hosting coffee mornings or coffee evenings at our premises at GAP House. Recently, we added a well-being workshop for parents, which takes place every Monday morning. It is a great way for parents to meet and communicate with others who are at different points on the journey. We have also added a Wednesday "make time for yourself" afternoon. Where possible, we offer talks and direction. For example, a speech and language therapist is tonight hosting a 90-minute session on Zoom, free of charge. Forty parents have signed up and asked for the link to that Zoom meeting, which speaks to the lack of access to services like speech and language therapists. We offer support through our provision of a weekly parent care support group, which is led by a child and adolescent psychotherapist from our therapy team. She is one of the only autism play therapists in the country. She supports our families in trying to navigate this broken system. She works with parents who are dealing with school refusals and anxiety at home and she puts supports in place for these families. It makes a difference. If I was asked what GAP does that would make a difference if it were implemented across the country, I would point to something like this – putting a therapist in place who uses programmes like the ones she uses. It makes a difference to our members.
We hold a meeting at the beginning of every week where there are anywhere between eight and 12 requests for phone consultations and follow-up meetings with a member of our therapy team, be it on Zoom or at GAP House. What the child and adolescent psychotherapist does is based on neuroscience and is proven to work and make a difference. Some of the feedback from the families tells us that it is a game changer. They see a major difference in their children's behaviour and how they engage, for example, better participation and engagement with school. This is one of the most effective things we do in meeting the request made in the survey for us to close the gap in services.
On a week-to-week basis, we run as many camps, clubs and activities as we can from low to high support, including art animation, drumming music generation, and high-support teen hangouts. These create opportunities for families who do not always have the opportunity to do so to engage in regular camps as much as possible. We also hold an adult hangout on Friday nights, which we added to our schedule last October.
This provides an opportunity for the adults to come and share their lived experience. Friendships are forged, groups come together and talk, and they arrange to do things outside the house like going to Galway United matches or bowling. They socialise and there is an opportunity for people to meet and support each other. We have got some positive feedback from our members that we are a good support, we are welcoming and friendly, we are a service in Galway that is very much needed, we are kind, understanding, proactive and helpful, and we support, are enthusiastic and focused.
Mr. Richard Taylor
Ms Ní Chonghaile has eloquently summarised what we do and a lot of the positivity. Everything we do, we do because you cannot get it anywhere else. There is a very long waiting list, which I am sure the committee will hear about throughout the rest of the session.
To summarise, inclusivity was mentioned at the start of the meeting and Ireland as being an inclusive society. It is very grounded in our mission, and our belief is that if we want to be truly an inclusive society, in particular regarding autistic people, we need acceptance. We can foster that through education, which should be grounded in neuroscience and best practice that provides and leads to the best possible outcomes. We are a small organisation in the west but the feedback we get from our members is that we are helping to make a difference. We encourage engagement with any State body that wants to share and learn from what we are doing on a small scale to see how it could be replicated in other parts of the country. We would welcome those engagements.
Ms Síle Parsons
I thank the committee for the opportunity to speak today. I represent the Autism School Dublin 15. We are a group of parents and professionals who have worked together for over five years to secure the provision of appropriate autism-specific education in Dublin 15 and nationally. When we began, we focused on the lack of special school places in our area. Now, we are fighting for appropriate education for every autistic child. True, inclusive special education is the provision of an appropriate education in an appropriate setting with fully trained staff. The hope of any parent is for their child to reach their full potential. This has been forgotten when it comes to the education of autistic children in Ireland. It is not child centred. How could it be, when every teacher is trained as an afterthought, every special needs assistant, SNA, is hard fought-for and every special school is without therapists or appropriate buildings?
Currently, for example, a request for an SNA support is submitted to the National Council for Special Education, NCSE. The special educational needs organisers, SENOs, do a full-school assessment of the number of SNAs already in the school for children with special education needs. This request is approved or denied based on the existing allocation within the school. How does this ensure the individual needs of a child are provided for? They are not providing the resources an individual child requires in school. They are playing a numbers game. The special education review committee, SERC, established the recommendation of two SNAs and one teacher per six special education needs children in 1993, 30 long years ago. The National Council for Special Education used these 30-year-old ratios as its guideline. It is only after an exceptional review that additional support is even considered. One child's assistance requirement should not be valued against another child's additional needs. We know of students at secondary school level who have an interest in learning home economics but, due to their SNA allocation being shared among multiple students, they must do woodwork instead, as their SNA is only available for that timetabled subject.
Another example is Danu Community Special School, a new special school for children with complex needs. It had 15 students with professional recommendations of one-to-one SNA support or, in some cases, two SNA supports for one student. Because the ratios of SNAs to students are the same in a special school as the 30-year-old ratios in a special class, at two SNAs per six students, after applying to the NCSE, the school was awarded a total of three additional SNAs to be shared between those 15 students. That is three, not the minimum of 15 SNAs required to ensure the safety and success of these students' school placements as outlined by their educational psychologist. A child's need for SNA support should not be up for negotiation. It should be granted without delay.
Training for a new teacher in a primary school special class is offered after the start of the school year, often in October or November. Training for any other job or profession happens well before you commence working. Additional training should also be provided after three and six months, but the initial training of understanding the fundamental teaching methods of special education needs to be done before the child is in the classroom. This will not only improve the experience for the child but also for the teacher. Nobody is handed the keys of a car and legally allowed to drive without learning the rules of the road first.
At secondary level, it is even worse. A teacher is expected to be able to teach autistic children with zero training, zero experience or zero understanding of the needs of the children they are trying to teach. A special education co-ordinator is appointed to a new special class and they receive the training, but only them. They are then expected to know it all, and after doing their training, it is assumed the whole school staff is now trained, book closed. Who is responsible for ensuring each child is receiving an appropriate education? Why are children leaving school after 14 years with only a school self-assessed leaving certificate? Where else would this be acceptable? Where is the inspectorate to ensure children are learning and progressing? Where is the assessment of the education programmes for students? Where is the review of what additional training is needed for staff? Where is the legal obligation for an individualised education programme, IEP? Special education is ever changing, improving in techniques, technologies and even additional diagnosis. Two or four weeks of retrospective training is pathetically inadequate.
Until three years ago, one cohort of children was continually being let down by the system. These children with complex needs required a special school to cater for their needs and provide them with the best education. They were left to languish on the home tuition grant, as the current system simply did not recognise their existence. It was not the NCSE or the Department of Education that identified this missing need; it was parents campaigning for these children's rights. After 15 years without sanctioning a single special school, the Department has sanctioned four new schools in three years. Dublin 15 special school, Danu, is already at capacity. No special school places are available for the next three years for children of primary or secondary school age in Dublin 15. When places become available, it will only be for one or two students each year. Our figures, compiled with the help of primary school principals, state clearly that, on average, over the next three years, Danu will need places for nine secondary school students each year. That does not include the requirement for a special school at primary level.
Although Dublin 15 has a special school, which was hard fought-for, the lack of future planning has resulted in a situation in which, after just three years, there are again no special school places. The home tuition grant or bussing to other areas are again being offered as solutions to these children. Where is the planning? We cannot have a repeat of last year, when 22 children were still without a secondary school place in Dublin 15 in June. These children have been in the primary school system for eight years. They are not invisible.
It is time for the provision of special education in Ireland to be child centred and to ensure every level of special requirement is catered for fully throughout the full education system - preschool, primary, secondary and higher education. For far too long, we have been drifting from crisis to crisis, from one end of the year to the other. One cohort of children is being failed by the system and the system is firefighting to resolve that issue just in time for a new cohort of children to be failed, when the firefighting begins again. It is time to stop this vicious cycle, this form of State-sponsored torture for parents of autistic children.
The legislators gathered in this Chamber have the power to change this. We all know there is no quick fix, but comprehensive training of every person within education would be a start, from the Minister herself across the system to even caretakers of schools. Understanding autism is a fundamental start, as is providing the requested allocation of SNA support per child, as required, with no delay, red tape or requirements for principals to prove the need over the coming months to the special educational needs organisers, SENOs, while the child is suffering and the school placement is breaking down. There should be no more firefighting. It is time for Government and all State bodies to be proactive, not reactive. It is time to cherish all children of the nation equally.
Ms Margaret Lowndes
I thank the committee for the invite. I am the chairperson of the D12 autism parent support group and the D12 Campaign 4 Autism Inclusion. I am also a mammy to two autistic boys, one of whom also has a lot of comorbid conditions. I thank our vice chair, who could not be here today but who contributed to the drafting of this statement.
We set up our organisation in 2018 due to the frustration of parents regarding the lack of school places, supports and therapies. The Government is failing the autistic children of Ireland. It is neglecting their needs and those of their families. When I was here in September, services for our children were bad, but the position in Dublin 12 has become even worse. We have two CDNTs that cover the area. From the beginning, neither has been fully staffed. There is not one full multidisciplinary team. Neither CDNT in CHO 7 is providing services and when they do provide some therapy, usually in a group, the quality is below par. One CDNT cannot keep its staff and has constant absences. When will senior management step in? When will the Government hold the HSE to account for the failings of these two CDNTs? One is collapsing and if the door shuts, where will all these children go?
Parents are expected to be speech and language therapists, occupational therapists, psychologists and much more. We want to be parents to our children and not service providers due to the HSE overpromising and under-delivering disability services for our children. Parents are in distress watching their children regress. Parents are being pitted against each other in the HSE lottery for CDNT services. We jump through hoops in order to have basic human rights provided. Our special school, which we fought hard to get, has no therapists on site to work with our most vulnerable children. The CDNTs are to provide therapists but they cannot even provide for the hundreds in their case loads. Our special school is left with the school inclusion model, which does not provide one-to-one therapy. We need to support our teachers and SNAs and not give them the extra work that the HSE should be covering.
In our area, autism classes have grown and continue to grow due to the continued pressure from our campaign. The NCSE's motto is to send parents of children in need of a class to us. Why is this still happening? All schools across Ireland need autism classes, and the need in Dublin 12 is huge. It has an ever-growing population. Homes are constantly being built. The NCSE has to look at schools that do not have autism classes as many autistic children in mainstream schools need them and need access to support their learning. The NCSE must stop using this as an excuse to not talk with schools. What exactly does the NCSE do? We need a clear answer on exactly what it does, how it spends its money and how it is going to provide for our children. Parents get their information from the wonderful support groups around the country because the NCSE does not support families. Where is its database? We have asked numerous times for it. Why does it not have one? It still does not know what child is on tuition or in preschool or what child needs a primary and secondary school place. The NCSE is another entity that has failed our children.
Autistic children in mainstream schools are often forgotten when it comes to supports. They receive little or no SNA access and schools have to fight for SNA reviews. Why does everything take so long? Set hours are reduced when a teacher is needed. Movement breaks are lost. Many are falling through the cracks because schools are not supported enough by the Department of Education and the HSE.
Let us be clear: the system relating to health and education is broken. Political power needs to hold Departments to account for not doing their jobs. Most of all, we need action. There is too much talk and patting each other on the back but no real meaningful change for our beautiful children. We hope this committee can make the difference and we are asking it to step up to the mark.
Ms Parsons mentioned training. As part of the project here in Leinster House all 1,500 staff, both political and non-political, will be part of that training with AsIAm so there is a better understanding from all of us in the political circle on autism.
Ms Síle Parsons
That makes sense. However, when you think of a school setting where people are interacting with a large cohort of autistic children, it really hammers home that this should be done in every school.
I agree. The Middletown Centre for Autism was before the committee a number of weeks ago. We also travelled up to Armagh ourselves. That organisation has the best practice with regard to training. It is my view, and I think it is shared, that that organisation should be rolling out the training across the country for both parents and those in our education system. That training needs to be put in place for everybody, both in education and politics, as well as support for parents.
I call Ms Egan, who is representing the parents of children in St. Joseph's National School, Longford.
Ms Órla Egan
I am the principal of St. Joseph's National School in Longford town. We are a DEIS band 1 school with three special classes for children with autism. Situated in Longford town, we have a very diverse school community. I was asked to speak on behalf of a very concerned and frustrated group of parents regarding the lack of supports and services in our town. There are major concerns about the lack of services and the waiting times within the CDNT in Longford and the struggles with the allocation of services within the disability team.
As we all know, research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and skills. Early intervention not only gives children the best possible start but also the best chance of developing to their full potential. The sooner a child gets help, the greater the chance for learning and progression.
Parents of children within our special class often come to me. I will provide an insight into what some of them have come to me to talk about. What can I say to the mother of a seven-year-old boy who was crying because she knows in her heart that her little boy is trying to communicate with her but is only receiving his first ever block of speech and language therapy? Another parent has English as an additional language and was given a programme for speech and language therapy to do at home with her child. Not only does she not have the language but she does not understand the complexities involved in the process. Speech and language therapists and occupational therapists are trained for a number year to degree level or higher but due to the lack of supports and services this has been put back on parents, who are asked to complete programmes at home. Parents are not trained professionals with the necessary knowledge base but due to lack of services they are asked to do this. The teaching staff, SNA staff and support staff in my school are also asked to carry out duties with regard to the programmes that are given. We try our best but we are not specialists in these areas and we should not be expected to carry out these roles. We do not expect speech and language therapists or occupational therapists to come into our school and delver a curriculum, so we should not be asked to carry out their roles.
Another parent whose daughter has severe behaviours asked for support with the disability team, only to be told there is no behavioural therapist within the local team. This is not good enough. A little seven-year -old boy with severe anxiety was given an appointment every two to three weeks, for only six sessions. How can this timeframe and break in continuity help the boy overcome his fears and anxieties, even to get that little lad in the door of the therapy services? Another parent begged me to help with a clinical diagnosis as the closing date for enrolment is pending. Her child requires a diagnosis and a recommendation for a special class but unfortunately the disability team will not have it completed on time for that parent to seek a place. She knows that a special class is the best possible setting for her child.
Children with ASD will require various types of interventions as they grow but unfortunately, these resources are just not there in Longford town. The services within the town are almost non-existent and we are at crisis point. I understand the pressures and lack of human resources within the CDNT, but how is it that this is being allowed to happen in 21st century Ireland?
I have listened to what was said by other parents and advocacy groups and, unfortunately, we lack a support system for these parents. There is also a lack of knowledge within the community. In our town, we have no respite services, resource centre or community support and, most of all, we have nobody to ask because there is no one there to pick up the telephone. One parent would love his little boy to join the local soccer club. Luckily, we have a club for children with additional needs. All that little boy wants to do is to play soccer, but he has been on the club's waiting list for two years.
Evidence from research and observation agrees that early intervention increases the chances of success. We all know this. I refer to improved overall development, social skills, coping skills, relationships and quality of life. By investing now in their future, these children have the potential to be independent and to contribute fully to society. Why is this not happening? Why is every day a constant struggle and a battle for these parents to acquire the services their children deserve? This is the voice of the parents. All we want is for our children to be heard. Currently, we are their voices. Every child has a right to be heard and to live a fulfilled life, but unfortunately for us, we may never hear our children's voices or see them live independently as members of society who are contributing fully. This is because they have missed out on the services and supports required during a vital period of their development, namely, the period of brain development when the brain is ready and has the greatest capacity to alter the way it designs itself, based on the kind of experiences the child is exposed to. This time is now lost to our children, never to be replaced.
I thank Ms Egan. Family resource centres were mentioned. It is an issue I am working on. The last time applications were open for new family resource centres around the country was in 2018, some five years ago now. At that time, there were more than 90 applications. Of those, 11 successful sites were selected. Tusla told me that my home town of Longford has been identified as a priority in this regard. It is a town with a population of 10,000 people and is multicultural. There are 36 nationalities in the school where Ms Egan teaches.
Ms Órla Egan
Yes.
We are a priority, yet there is no sign of applications being open for us to put forward a case to seek a family resource centre, despite the fact we need one immediately because we do not have that resource in such a large town. Tusla needs to take that on board. It affects not only Longford. Family resource centres are needed in other areas around the country. Where there is such a need, the Government and Tusla have a responsibility to ensure funding is put in place and a centre is provided. We cannot close the programme for five years and not provide this opportunity again.
Donna Leavy and Josephine Feeney are parents from Longford and strong advocates for young kids in our county town. I call Ms Feeney.
Ms Josephine Feeney
As the Cathaoirleach said, I am a parent of two non-verbal, non-speaking autistic children in Longford, and Donna is also a parent of two autistic boys as well. We are speaking from the parents' point of view. I will talk about what we have found. Both my boys were diagnosed at two-and-a-half years old. They were quite young and we were lucky to get that diagnosis. With their presentation, it was obvious they were autistic. The process went quite smoothly. Within six months, both boys were diagnosed. Then there was a cut-off, however, and that was it. The therapies were not consistent after that. We were basically sent home as parents to become speech therapists, occupational therapists, psychologists, etc.
Things have not really changed. A big hit came during Covid-19, when there was no support whatsoever. One of my sons also has an intellectual disability, which means anything to be done over a screen is not going to happen. It is necessary to be physically in the room to try to capture his attention. My two boys are five-and-a-half and seven-and-a-half years old now. We are blessed to have a Sonas unit in the local primary school and both boys have places there. Even with this, when the oldest boy was going from preschool to the mainstream school, four children were seeking one place. That was a terrible experience to go through as a parent. The only reason my son got the place was that we were in the catchment area and the others were not. If he had not got that place, I would have been fighting to get two children into two different schools. Luckily enough, however, we received the place.
In the disability service in Longford, we do not even have half a disability team. We have 0.5 full-time-equivalent, FTE, of a speech therapist. More than 1,000 children are waiting to be seen. What are the issues with the HSE in this regard? Why is it so hard for it to source staff and why is the retention of staff so bad? Many therapists have left the CDNT teams and gone to primary care under the HSE because there are better benefits available. We understand that. These staff are human beings who need to work and have their own families to take care of. As far as I know, the CDNTs only provide 70% maternity leave, while in primary care with the HSE it is 100%. These major differences exist as well. When staff in the CDNTs go on maternity leave, no cover is provided and our children are being left there. Even if they have been seeing a therapist, no cover is provided if that person goes on maternity leave. There is no agency with therapists on hand to ring that could come in to cover for six months or anything like that. These things need to change. We need consistent services within our disability service provision.
From the point of view of a parent who has been bringing children to services for a very long time, they are capable, like anyone in a formal situation, like this one, for example, of masking and of being somebody else. Our children can do that. They may not be able to speak, and my children cannot. Other children can speak. Children will mask as well. We have to bring these children, to whom we cannot explain what is happening or where they are going, into a room in a strange building with these therapists and then we expect them to perform. Our children are not going to perform. It might be possible to get five minutes out of a child, but then they are gone.
The whole way of providing therapies to our children needs to change. The way I feel, and I am speaking for many other parents we have talked to as well, is that these therapists need to be brought into the schools and homes. My two boys are both non-verbal and autistic, but they are two completely different children. They learn completely differently. What works for one, will not work for the other. If these therapists came into the house, looked at how the children are when they are more comfortable in their home environment, they would see these children's true selves and their programmes could provide what is specifically needed for each child. When therapists go into the schools and work with the children there, the teachers and the SNAs are there as well. This helps the teachers and the SNAs.
My youngest son is five-and-half years old. He is in junior infants. His teacher came from mainstream education and this is his first year in the Sonas unit. He is doing his damnedest to try to learn how to teach my child. He is doing everything possible and says he is trying to teach him, but he is not being given the tools to do so. There is nobody to come in to help the teacher or SNA to teach my son. Both my sons, as well as many other children in the county, are not only experiencing a lack of services but also a lack of education because the teachers are stressed. They are trying their best to teach these children but they are not being given the tools to do it. This all falls back on the parents and the families. To be honest, I would not wish this life on anyone.
Ms Donna Leavy
There is no denying that this is an emotional topic for us all to talk about. I have two autistic boys. The first boy was diagnosed in 2019. Luckily enough, this was under the early intervention team because in my experience the amalgamation of the early intervention and school-age teams in the CDNTs has not been a favourable transition. When my child was discharged from the early intervention team when he turned five, we were told he would have a two-year wait to access services in the school-age team. The situation has only deteriorated since then.
These therapies are as vital to our children as life support is in ICU. Our services and the access our children have to them should be protected, and while I hope there will not be another pandemic like Covid, we should not be in a position as parents such as during the restrictions when our speech and language therapists were swabbing our children at Covid centres. We need protection of these services for our children.
Moreover, our children need to be looked at holistically. We need to look at them in our own environment and services need to be provided to them in schools and in their homes, where there is a true representation of the child and the child as a whole is considered in the context of how they learn and adapt to circumstances.
I echo what every other parent has had to say. We hope to see progress and change for our children.
I thank Ms Leavy and invite Ms O'Mahony to make her opening statement.
Ms Laura O'Mahony
My husband, Raymond, and I have travelled from Clonakilty, County Cork. We are part of a group of parents who have set up a campaign for a special school in west Cork. We have a six-year-old son who has non-verbal autism and a moderate intellectual disability. We were lucky enough financially to be in a position where we could pay for him to have the diagnosis privately. Otherwise, I do not know when we would have got it. We then got him into a unit in our local town as early as we could and that school was fantastic. It did everything it could, but it just was not a suitable place for our son. His needs are just too complex, so we needed a special school. At the moment, therefore, Max, who is six years old, travels from Clonakilty, through the Jack Lynch Tunnel and through traffic, all the way to the other side of the city, which takes an hour and a half. I apologise for getting emotional about it but it has been really difficult. I do not even know whether he is doing well at the special school, although we know the school is very supportive and is doing its best. Because it is so far away, however, I do not know.
Currently, west Cork has no special school whatsoever, and Cork is geographically unique as the largest county in the country. As the committee will know, west Cork stretches from just west of the city all the way to Mizen Head, so some children must travel for two hours to get to the city because, at the moment, all the special schools are located in the city. We currently know of 15 children who travel to the city from west of Bandon, and we have identified approximately 60 children who would benefit from a special school being in this area. Some of these children spend as little as one hour a day at school, yet they travel huge distances.
Leaving your local area for school means no after-school activities. If you want to have a birthday party, it is unlikely the children in your class, who are probably from the city, are going to come to, say, Schull or Ballydehob. As a result, it impacts on friendships and the children have less time with their siblings. They are exhausted and it impacts on family relationships at home. It means more time sitting, which is detrimental to the health of kids with physical disabilities, and if a child is sick or in trouble, as many committee members will know, the parents will get a phone call to collect the child. My child has a lot of behavioural issues, so that has arisen regularly in the past, although, thank God, we are in a good place at the moment. The parents would have to leave their workplace and travel all the way from wherever they were based in west Cork, and they could have another child who was attending a local school, so there is the question as to what they should do with that child.
Special education is essential to meet the needs of a particular cohort of children. Placing children in the wrong educational settings impacts not only on them but also on other pupils in the class. Inclusion is important but only if it goes well and meets the child's needs. In special classes, teachers are often not trained to support special needs in the way they would be in special schools, and they definitely need more supports. We have spoken to some therapists locally and know there is an increasing number of children with complex needs. Furthermore, the population of west Cork is increasing rapidly. The therapists have told us they are reluctant to give a recommendation for a special school in west Cork unless it is absolutely necessary because they know the child will have to travel all the way to the city, and for some of these children, that is just not going to happen. Instead, they provide a kind of cover-all note stating that if such travel is not suitable, the child can attend a special class, but that is not the appropriate place for the child.
We are failing these children. We are not providing them with an appropriate school place in their local area. This should not be happening.
I do not think it is acceptable that parents would have to drive a three- to four-hour journey every day. Mr. O'Mahony might wish to add some comments.
Mr. Ray O'Mahony
I thank the Chairman for inviting us to the meeting. It has been very uplifting to hear all the stories. It is tough work, and knowing the dedication that others parents have, like us, put in reassures us we are not alone.
To add to what Laura said, we can speak only from our personal experience. I am new to autism. Our son is six, and we have been investigating it since he was diagnosed. It has been a case of trial and error and we have seen the services, unfortunately, drop off after the initial diagnosis. We had to spend €1,200 just to get him labelled as autistic to open access to the services, and we have then found that a lot of the services are just not there. For example, our son is non-verbal, so he has a speech and language therapist assigned to him. My assumption was this would be a good contact to approach to help him learn to speak, but she advised me that was not the case. I pushed back on and suggested she could see how it could be misleading that, despite her being a speech and language therapist, there were no speech and language therapy sessions.
That is just one example. My wife and I and other parents are all about finding solutions. We know there is a problem and we know there is no wise old man or Mary Poppins figure who will resolve everything. My wife and I have carried out a lot of individual testing our son. He has a lot of gut-related issues and we have gone through his paediatrician in that regard. Unfortunately, there seems to be a lack of creative investigation into children who have a lot of issues internally. To give one example, during our research, we sent some hair samples to the US and the results that came back indicated some of the metals were off the charts. How can matters such as that not be investigated here?
There is so much to talk about but I might bring one point to the committee's attention. We have been engaging with a school in Wales, Ysgol Y Deri, and its headteacher, Chris Britten. I would advise the committee to research it. It is the largest school in the UK that deals with special needs and it carries out a lot of creative engagement with kids who are non-verbal and have severe issues. The dedication and resources it has could be a good model for the committee to study. Mr. Britten has indicated he is open hosting us or any public representatives who want to tour the school and see exactly what it does. Perhaps it is something we could apply here. Every parent has their individual story and we are here to help the committee. We are here to engage with it, share our knowledge and, I hope, create solid foundations for all the children in our country.
I thank Mr. O'Mahony. He might forward the details of that school to the clerk to the committee.
I now invite Ms Elisha Sweeney from the Mayo Autism Camp. I congratulate the group. I understand they will receive a Cathaoirleach's award in Mayo tonight. Well done for the work you have done.
Ms Elisha Sweeney
I thank the Cathaoirleach for the opportunity to speak here today. I am a mother to autistic twin girls. In 2019, along with another parent, Ms Colette Heaney, we set up the Mayo Autism Camp. We are a not-for-profit voluntary group. We have Garda vetted more than 60 volunteers who support us in running activities for children with autism and their families. When we set up the group in 2019 we did it with the intention of running a small summer camp for children with autism and their siblings as there was nothing available for our children. Such was the demand, however, we are forced to extend it to two weeks and cater for 30 children each week. As a result of the first camp we have gone on to host camps during each of the holiday breaks from school. We run a learn-to-cycle and football skills programme, and music and art workshops. We organised two very successful autism resource fairs to give parents, adults with autism, and people involved in education and health, an opportunity to see what resources are on offer. During Covid, when families were completely forgotten about and abandoned by the system, we hosted webinars for parents, online fun activities for children to engage in, and a six-week summer programme with the Mayo sports partnership. We did this with no funding from the Government and only through the generosity of the people in Mayo.
The families in Mayo are very frustrated at the lack of communication, but more importantly at the lack of support and services. A recent survey carried out by ourselves shows the deficit of the services within the primary care, CAMHS, and children's disability network teams, CDNT, structures, and the lack of clarity and transparency of service provision across the services. Many of our families are waiting for more than two years for a service. One of our parents has been waiting for more than six years for support of any kind. Many children have aged out of the service and have no supports. Those children who are under CAMHS have been left in limbo. Mayo is at crisis point in this regard. This has been raised in the Dáil and yet nothing has changed for so many. Families are distraught. We are receiving calls daily from parents who feel so alone. They feel that no-one cares and they cannot afford private therapy. As a result, their children are suffering. One parent spoke of her concern when she said "I worry that this lack of services will mean that my son will end up with even more challenges and mental health issues, etc." Others with grown adult children are forced to mind them 24 hours a day, seven days per week, with no respite. They feel that as they are getting older the burden of responsibility is weighing heavily on them, affecting their physical and their mental health. They are worried about the future for their children. The time for talking and procrastinating is over. Families need services and they need to feel supported.
I now invite Ms Hilda Duignan and Ms Claire Earley from Autism Parents Athlone, County Westmeath.
Ms Hilda Duignan
Ms Claire Earley and I represent Autism Parents Athlone. Back in February 2022, Ms Earley set up a Facebook group, Autism Parents Athlone, with the intention of making Athlone a more autism friendly town. After Claire asked me to come on board with the group, which I was delighted about, little did we know that we would become local advocates for so many families in the town with regard to helping get school places set up. Currently in the town there are four secondary schools. Up until last week, only one of those secondary schools had two classes for children with autism. These classes were subscribed for the next two to three years with no places currently becoming available until 2025 in that school. Just last week, we are delighted that Athlone Community College opened its special class, which was due to open in September 2022. Due to red tape and more paperwork - and everybody has spoken about why does it takes so long - in June 2022 there were 12 children who had no school places in Athlone for September. They were offered places in Ballymahon or Glenamaddy, which are 50 km trips each way. As Ms O'Mahony has said, these journeys are just too long for our children. Siblings are being separated with regard to school places and parents are having to give up employment because they must be there for the children who cannot attend school. Last week, school places open for six of those children but six more are in inappropriate school positions. They have accepted places rather than not have places, whether they are appropriate for them or not. Obviously, we are very grateful to see the places opening but we are not done with one. More places need to be opened at both primary and secondary level schools around Athlone for children with autism.
My own story is that I am a mother of four children. My younger two are six years and four years old and both have been diagnosed with autism. Both children have extremely different presentation and both have had very different journeys to being diagnosed, even though there is only 22 months between them in age. My first child to be diagnosed is Edie who is six. She was accepted by the early intervention team in Roscommon in February 2019. It was a very straightforward process for us, thankfully, as our first outing in the autism world. We had a wonderful early intervention nurse who come to us every second week to help us with play practice for our daughter, with guidance on how to observe her in the home, and she made recommendations and took on board our concerns which she brought back to our multidisciplinary team in Roscommon. We were put forward for an autism diagnostic observation schedule assessment, ADOS, and diagnosed by August 2019. That was it. She received no services since then. We were fortunate to be able to avail of the home tuition grant. We had a fabulous tutor and she then went into an early intervention preschool class, which had just opened in time for her age group to participate. She has never had formal speech and language therapy. She is what one might call verbal but not conversational, and it is only in the last 18 months or so we could say that. Other than that she would have been considered non- or pre-verbal. She has never had any occupational therapy that we had not paid for. She has never had any psychology assessment since her initial diagnosis. Our son is four years old since November. He was accepted by the same early intervention team in May 2021 but he was never seen by them because the transition to CDNT happened in November 2021 and then the services were just not there. We ended up having to go for a private diagnosis for our son. This cost us €1,500 and two trips from Athlone to Limerick and back. Again, this involved trying to make arrangements for our other three children, one of whom has autism, so we could both be there for our son's assessment. We accessed that assessment and diagnosis so that he could avail of the same early intervention preschool class that her daughter had access to. Our daughter is now in junior infants in an autism class attached to a mainstream school but it is not the same school where she attended early intervention.
I have four children in schools in three different counties. How is this right in 2023? My six-year-old daughter is collected at 9 a.m. from my home and she travels to Ballinasloe in County Galway. It is not a very long journey - it is 20 minutes - but she is in Ballinasloe in County Galway for her school. My four-year-old son is collected at 8.30 a.m. in the morning from my house. In order to pick up six other children it takes 45 minutes to do a 16 km journey to his school door-to-door on the bus. He is on the bus for 45 minutes each way because it collects children all around the town. He is four years of age. He is exhausted by the time he gets to school and often he falls asleep on the way to school or on the way home from school, and this impacts on his night's sleep, which is pretty poor anyway as many other parents of children with autism will identify with. His school is in Athlone in County Westmeath. I also have a son and daughter of seven and eight years old who attend our local primary school, which is 3.5 km from our house.
They could practically walk. They are in Drum, County Roscommon. I am dealing with teachers, principals and public health in three different counties for my children. Thankfully, they get school buses. I cannot even imagine trying to travel a 32 km round trip every single day, which I did do until their buses were granted after the Covid-19 crisis. Of course, everything was delayed and there were no bus services for the children.
Another area in which Ms Earley and I are involved is in social inclusion for children with autism. We have set up the Infinity Friends autism social clubs. We started in September 2022 with ten children and we now have five clubs. We now, since September of last year, have services for 50 families in Athlone. Not only has it become a social club for the children, it has evolved and developed into a social club for the parents, because every single one of these parents in this Chamber could be a member of our club. We have met them all before and they have all met us before. I am echoing so many stories. Every single story I have heard so far this morning I could pull from either my own experience or the experience of the people we meet every week in our club.
Ms Claire Earley
On my own personal story, my daughter, Sophia, is nine years old and she was diagnosed at the age of two and a-half. She had all the early interventions and she went to an early intervention class. Sophia has never had the same teacher for a full year of school, so early intervention kind of went out the window in regards to helping her. We had been talking about integrating into mainstream pre-Covid-19 but now we are on reduced hours. Sophia regressed a lot during Covid-19 and during the lockdown, as I am sure most children did. We noticed traits of attention deficit hyperactivity disorder, ADHD, during the lockdowns and we queried it with our teams. There was the upheaval of the CDNTs being developed. We were seen last August by Sophia's psychologist, who recommended she be referred to CAMHS and assessed for ADHD. Yet, on January 19, they closed our case without seeing my daughter because there was no clear indication of ADHD in their opinion. They made that decision without seeing my daughter, Sophia. Our doctor and her psychologist, that is, two medical personnel practitioners, both recommended an ADHD assessment but yet CAMHS turned us down without seeing her. We are fighting it and we are appealing it but it seems to be such a common thing. It is echoed a lot by the parents on the Facebook groups who are looking for help with what to do. What do you do with something like that, other than appeal it and appeal it? Meanwhile, our daughter is struggling and that is affecting her schooling, so now she is on reduced hours in school because she just cannot cope with her levels of anxiety and her behaviour.
Behaviour is a language, in my opinion. If a behaviour is there, something is happening to cause it. She is pre-verbal, so she cannot tell us what is happening in her little head. She can tell us what she wants and what she does not want, but conversation-wise, it is a different story. I really feel she has been failed by the system in so many ways. Every parent here just wants support for their children. That is echoed through our group, Autism Parents Athlone. We fought tirelessly for a new class to open. Thankfully, it has but by God, it took them long enough to open it. Now, there is a new list and there are more children for this September. We are now starting first foot on the plate. We are fighting for another class, which, fingers crossed, we will have. However, if we do not have it, there will be more children in September who will either have to take an hour of a bus journey before they even reach school or they will be at home for homeschooling, which is just so hard to think about. Families have to give up work just to stay at home and to bring in tutors, that is, if the tutors turn up. There have been families that have qualified for tutors but the tutors do not turn up.
Infinity Friends is a place where my heart lies at the moment. It gives the children in Athlone and surrounding areas, children from Longford and Mullingar also come over to us, somewhere to be where they do not have to mask. They do not have to put on a show for people and do not have perform. They can come in and just be themselves. They can take part in activities if they want but they do not have to. There is no pressure put on them. The parents come in, take that deep breath, sigh and say, "They can be themselves here. There is no judgment here." The HSE is sending families to us. They are coming to us saying that their team has told them to ring us because it is somewhere for their children to go. We are doing this on a voluntary basis. I work full-time for An Post. I do not have any more fuel in the tank to provide more and more clubs for more and more children but it absolutely kills me to turn children away. We are therefore eating into family time to provide support for more families. It is heartbreaking to hear the stories of what the children and families have been through.
I am thankful to be here today to be able to voice what we are doing in Athlone and to be able to hear from all the other parents and advocacy groups around the country. It is a pleasure to be among them and I thank them so much for everything they do.
I thank all witnesses as parents who are involved in support groups for the work they do. I echo what was said at the committee, which is that we need to see the support groups replicated across the country, but the Government needs to support the groups financially. We cannot have situations where groups have to do significant amounts of fundraising to put in place the supports their children are entitled to. That is something that needs to change.
There are a few witnesses on my list who called this morning who said they were not able to come. I ask witnesses from the last couple of rows to indicate to speak.
Mr. Fergal O'Malley
First, I thank the committee for the invitation today. My wife, Rachel, and I are here to give a snapshot of our story and what we have been through over the last couple of years with regards the education of our son, Harry.
Harry is currently ten years old and is a beautiful, intelligent, loving, caring child. He is difficult at times but as parents, he is our Harry and he is a little legend. Harry has a diagnosis of autism. He also has a pathological demand avoidance, PDA, diagnosis and a recent ADHD diagnosis, for which he attends CAMHS.
Like everybody else here, I want to give a specific account of our journey as regards education. We have had same difficulties as everybody else here as regards getting supports, which we believe has led to this situation. Harry attended a local ASD unit in our hometown. It is a national school with three classes. Initially, Harry was offered a place due to his ASD diagnosis. Shortly after that, his place was withdrawn because the ASD diagnosis from the psychologist did not state that he needed a place in that school. I am originally from Mayo and we had travelled to Rachel's hometown. Because the psychologist's support did not mention specific schooling, his place was withdrawn, so we had to go back to Mayo to the psychologist to get that included in the report. Harry was re-offered the place again and we accepted it. We were delighted with it.
You could say that Harry is very high functioning. Many of his issues are behavioural.
He has a meltdown and just cannot cope or does not know what is happening. We looked for extra supports in the school and were told that they would not waste supports on him because he did not need them. They had other children who were more deserving of them. On another occasion we were at a school play for another of our children. We have four other children. I was asked to visit an office where it was suggested to me that, due to Harry's behavioural issues and meltdowns, there was a broom cupboard they could have padded out and they could lock him into it for his own safety. I declined that offer and walked out of the room. I was absolutely disgusted.
People ask me why did I not just take the child out of the school after that. It is not a case of that. He has nowhere else to go. He has four other siblings in the school. Shortly after that, Rachel, my wife, attended an individual education plan, IEP, meeting with the school. The teacher was there, and I have to say that, although he was not supported, he was brilliant. I cannot speak highly enough of the teachers Harry has had for the past few years. At the end of the meeting it was stated in a matter of fact way that Harry's class teacher and SNA were changing and he would also be moving to a different classroom. As anybody here can imagine, we felt and knew that was too much change for a child with autism. We highlighted our concerns. We were told that our concerns were noted but it was still going to happen. We contacted Middletown Centre for Autism. We spoke to the people there about whether this was best practice. They were horrified. We went back to the school with suggestions. We spoke to Middletown, whose staff provided us with what they called stepping stones to introduce change. We came to a decision with the school so that not everything would change, and it would be phased in over the year using the stepping stones plan. That was never implemented.
There were also issues where Harry had been able to leave school property and get out onto a busy main road. At this stage, communication and the relationship with the school had deteriorated to the point where I was offering to get someone to mediate between the two of us. This was the last thing I wanted. We are not parents who want to be fighting all the time. However, when a ten-year-old child is involved, you are not going to give up either.
This led to the night before Harry's school tour. We got a phone call at 10 p.m. to say that Harry had been suspended for the following day and would not be able to attend his school tour. I know I have limited time, but I also want to state that Rachel does not work. Harry was on a reduced school day. He was only going in for one or two hours. If anything happened in the morning, at the drop of a hat, Rachel would be called to collect Harry and bring him home. The psychologist had told the school that was not the answer either. However, it was still happening, and for Harry's sake we did not want him distressed. Rachel was always there, and it was never a case of him being at school so it was their problem and we were not dealing with it.
The suspension led to a further breakdown with the school. We felt that, even with all of the work being done and the sign-off of the principal and the teacher, the proper supports were not there. This led to Harry regressing a bit. He was not really learning anything. It led to a further suspension. The National Educational Psychological Service, NEPS, and NCSE have been involved. They were providing supports. However, the people were not there to implement them. Harry was suspended again. There was an issue before that when Rachel had been in the school and was secretly recorded on a personal phone. This video was shared within the school, but I am not going to mention who, where or why. These images were shared. The complaint to the board of management was totally ignored.
Shortly after, the principal changed. We spoke to the new principal and agreed to a fresh start with open communication. We were delighted. We were seeing a positive attitude and we felt that at this stage the school really wanted to work with us for Harry's education and to get him an education. Meltdown incidents had more than halved. The feeling of coming in from work in the evening and seeing Harry sitting at the kitchen table reading a book - now, it was a book for a junior infants child - but it was still an amazing moment. Harry made his first communion. Everybody was on tenterhooks, but everything was absolutely brilliant. There were tough days, which I admit. I am not going to say it was plain sailing; it was not. However, meltdown incidents had more than halved. We were happy and getting great feedback from the teacher and the school. The ethos of open communication was still there. We were delighted to come in and see our child reading. It made me so proud.
On 29 September, Rachel was called into the school. She brought Harry home. That evening we received an email saying Harry was suspended until further notice, and the school was going to the board of management to expel him. We were both devastated. The school would not reply to our emails. Nobody would get back to us. I did not want to do it, but I was so annoyed I put up a post on Facebook. Only following that did somebody from the school come back to us and say that the expulsion report was being prepared and we would receive a copy in the post when it was done. The Director of Public Prosecutions, DPP, would have been proud of the expulsion report that was prepared to expel Harry. It was three to four inches thick. It contained every single negative aspect from the day he started school. They even included the letter the play school teacher had written for the psychologist. We had provided all of this information to the school. It included that letter in the report. The report clearly showed, and I was able to show from the report was-----
I advise Mr. O'Malley, that he is identifying a person, even without using a name, as it is a person in certain position. I ask Mr. O'Malley to steer clear of doing that, please.
Mr. Fergal O'Malley
I apologise. I was referring to the school. The report was prepared to us. It showed nothing good. It did not show the progress made. I was able to show from the report that in a five-month period there had been 20 meltdowns. However, in the preceding 11 months, there had been nine meltdowns. However, all I was given back was that the severity of the meltdowns had not changed.
That happened on 29 September. We were devastated. We went to the board of management to appeal it. The board of management upheld the expulsion. We went to a section 29 meeting to fight our case there. It was stated that the decision had been made in May, but the school waited until 29 September to carry out the suspension and expulsion.
As for the impact that has had on Harry, imagine lying in bed at 3 a.m. and your ten-year-old son comes in to you crying because he is wondering when he can go back to school. I feel we had made progress and argued the case we had done so and that we were willing to work and do anything we could to keep Harry where he was. We have lost all that. Harry has regressed two or three years with regard to behaviours and everything else. It is not just Harry, because, as I have said, we have four other kids at home. They have suffered because of this. Everybody has suffered, but we just feel he was viewed as too much trouble so it is a case that he can be somebody else's problem. Harry was suspended on 29 September last. Home tuition was granted last week. That is the first bit of education Harry has received in the four months.
I thank Mr. O'Malley. We move on to Mark Devereux from Waterford.
Mr. Mark Devereux
I teach one of the autism classes in Mount Sion Primary School in Waterford. We are a DEIS band 1 mainstream primary school with two autism classes. I set up my class in 2018 and have been teaching it ever since.
The first issue I wish to speak about is access, or lack of access, to assessments and therapists. We received 11 applications for places in our autism classes for September. Only one of these autism assessments was done by the HSE. The other ten were carried out by private professionals. Some of those are not up to standard, which is something we have come across over the years. It is ridiculous on one level that parents are having to fork out hundreds of euro, or thousands in some cases, to get assessments to potentially get a place. My other concern is how many families are sitting at home with kids in need of a place in one of our autism classes, but who cannot afford an assessment. It is not good enough. The difficulty of accessing assessments has been mentioned multiple times by the parents who have spoken.
Following receipt of diagnosis, things do not get any better. When I set up my class the HSE had the early intervention teams and the school age teams for therapy. In my first year in the class all the children in my care were dismissed from the early intervention team and placed on waiting lists for the school age team. That never happened. The year before last, Waterford transitioned to the CDNTs. As anyone with experience of the teams knows, things do not get any better after that. Just one child in my class has received a visit from a therapist in school in the past five years. I have children who have been waiting five years for therapeutic interventions from psychologists, behavioural therapists, occupational therapists and speech and language therapists. Some of our children have started to receive therapy because their parents have been hounding the therapy teams. I have begun calling the therapy teams and it was pointed out to me by one of the receptionists that if we flag, raise and seek to prioritise a case, the child will then get bumped up the list. Other families do not know this, so obviously they are not getting access to it. That is on some of the teams. With others we are left in limbo and told the child is on a waiting list and will be seen at some point, but when that will happen we do not know.
In fairness, I work with a fantastic team in school, including SNAs and other teachers, and fantastic families. However, we are not occupational therapists, speech and language therapists or psychologists. In the past five years, we have come up with plans for speech and language to help children who were not speaking to begin to talk. Other children have received assistive technology with a little support and we will develop plans to get the best out of them. It is similar with children who have sensory needs and so on. The parents, SNAs and I have come up with these plans, but we are doing them blind based off the little support we get, or off five-year-old plans created following a diagnosis when the child was three or four years old and non-verbal. It is just ridiculous.
In fairness to the therapy teams, when we actually get intervention from them the therapists are fantastic. They are doing their best, but there are just not enough of them. We are referring children and seeking to get support from psychologists. Before Christmas, the two psychologists on one of our CDNTs walked out. Children on that team have no access to psychology supports. With other teams, as was mentioned earlier, if a therapists goes on maternity leave, a child might receive one appointment or session before the therapist goes on maternity leave, and then they are back on the bottom of a list to wait until the therapist comes back from leave. It is not good enough.
As I said, families, teachers and SNAs are not qualified in these professional areas and we need the supports. From a school point of view, continuing professional development, CPD, and training are not up to scratch. All mainstream primary schools, on opening autism classes, receive one day of training in the first year for the whole staff,. That is it. Thereafter, it is up to the teachers in the classes. A person is only entitled to attend the training if he or she is in the class. We are allowed access CPD if we are lucky enough to gain access to it. Since we have two classes, we have 14 teachers between special education teachers and mainstream class teachers, dealing with the children in my and the other autism class daily through inclusion. They are not trained and have not received CPD. Some of them have entered the school since we opened up our classes, so they were not even there for the one-day training. Within the autism class, access to CPD is difficult and nearly impossible at some points. We use the TEACCH approach in our autism classes. There are two training programmes, with one taking two days and the other five days. I have attempted to get on the latter every since I entered the class and I am still waiting to get on it. In the other class we have had three different teachers and none of them have managed to gain access to the TEACCH courses in the six years the class was open. As more autism classes are opening, more teachers are seeking to access this training. The number of training places is not increasing, however. The NCSE tends to run one of these courses per year. Once it is booked up, that is it. You have to wait and make another attempt the following year. It is a lottery system most of us do not have a chance of winning.
The problem is that this is leading to failures for the kids. We have a lottery system for our children. They are lucky if they get into a class where the teacher is trained. Unfortunately, in certain circumstances, others are being placed in classes where teachers have received little or no training. That is clear from some of the experiences being described here. Teaching in an autism class is a completely different prospect to teaching in the mainstream. To be a mainstream class teacher you must complete your full degree or postgraduate degree, you must complete a probation period of a year where you are supervised by your principal, and all the rest. To enter an autism class you need only your qualification in teaching and you are popped in there. Perhaps you will be able to access the CPD and if you are not, then good luck to you. It is ridiculous. We are not allowed access the training before we enter the classes, so every new teacher in a new autism class is going in blind. They are going in off the experiences of the previous teacher and they are hoping to have a good support team in the school.
There is an autism-specific postgraduate course available for us to do. It is paid for by the Department, but to do it we must make ourselves available off site, out of class for between 15 and 28 days per year.
As any parent of a child with autism or anyone who has experience of working with autistic children knows, structure and consistency are key. It is not ideal for us to be missing that much schooling in a year, particularly if we are new to the class. There are other potential programmes out there. I paid more than €3,000 to do an online postgraduate course with DCU. This course covers pretty much the same material as the on-site course but it requires teachers to pay more than €3,000 of their own money to upskill. Surely if the Department is able to fund an on-site face-to-face course, it can fund the online course. This would result in better outcomes for children in that the teachers would be in school with them all year.
With regard to continual professional development for SNAs they should certainly have more access to training, particularly with the NCSE. Our SNAs play a key role in communication, sensory processing, regulation and overall knowledge of autism. They cannot access courses. They are not entitled to them. Teachers are able to avail of summer courses. Where I am from, there are no summer courses available on autism or any of the autism strategies we need to use. There are none for SNAs either. Surely some form of CPD training for the SNAs, even in the form of a summer course, would be ideal.
For the past number of years, for the summer programme, which used to be known as July provision, our school has run a very successful home tuition programme. We ensure that we match up all of the children in our school that need access to it with a teacher or an SNA. I am sure this is not the case for the parents who are in the room. I gather that it is nearly impossible for many schools in many counties to access tutors to carry out this work. The reason for this is very simple. The pay for SNAs is ridiculous. They take home approximately €10 an hour for home tuition. A newly qualified teacher with no experience or a mainstream class teacher with no experience of autism is paid more than double this for pretty much the same work on the home tuition programme. We have SNAs with more than 20 years of experience who do not engage in the programme because they cannot afford to do so because of childcare. It would cost them money.
Payment for teachers and SNAs has been mentioned numerous times in the Dáil Chamber. Last year we had teachers who engaged in the programme with us who were on temporary contracts and were not paid for the summer. They usually go on jobseeker's allowance for the summer. They were not entitled to do so because they were doing the home tuition and July provision. That was for ten hours a week and some of them were not paid until November. We have teachers who have childcare, rent and mortgage costs. They carried out work in July and August but were not paid for it until November or December. These are simple things that could be easily fixed to solve this problem.
School-based provision works for some schools and some children. In our school we find that due to the ratio of teachers and SNAs to children in the class, we can provide better opportunities for our children with the home tuition programme that we run. It is becoming increasingly difficult to keep it going because of access to tutors and SNAs. This is due to simple issues that could easily be fixed.
Ms Leanne Adams
I am a parent of two children with additional needs. These are autism, cerebral palsy and epilepsy. I am the chair of the parents' association of the school they attend. Ms Louise O'Toole is also a member of the parents' association. Like many of the people here I am worn, tired and exhausted. I will try to get through this but I am very nervous and I ask everyone to bear with me. Many of the children who attend the same school as my children have already been failed by the education system simply because there was no appropriate school placement for them. They only got an appropriate placement last year. I ask the committee to note this.
We are all very aware of the health system that is failing all of our children. I am recorded as having accessed services. My seven-year-old twins have autism, cerebral palsy and epilepsy. They were diagnosed at the age of two. I have received three hours of speech and language therapy for one but not for my child with cerebral palsy. I was blessed with Enable Ireland at the beginning when my children were diagnosed at the age of two. Since the changeover to the CDNT, one of my children has received two sessions of physiotherapy. Recently he had to have the gastrocsoleus operation on his leg to lengthen them. In my eyes they waited for my child to regress enough to intervene. He is still waiting on physiotherapy appointments. I do not have any. It is ridiculous. Please stop making our children part of these statistics.
We ask the committee to support the schools appropriately and stop straining the staff that we have. Our staff are worn out. They are not speech and language therapists, occupational therapists or physiotherapists. They are doing the jobs of many and are being paid very little for it. Our school opened with little to no support. This is its second year running. There is no special team, no occupational therapist, no speech and language therapist, no behaviour analysis and no school nurse, a role that is direly needed. There are no facilities. There is no indoor hall or appropriate outdoor area. There are not even appropriate tables and chairs to suit the height of the children. For my children the table is high and the chairs are low. One of my children has a physical disability. I am still waiting for the right chairs.
I managed to get my child's occupational therapist into the school. He said the appropriate chairs need to be fitted. I said that was great and asked whether he was going to get them. He said that it is the school that has to order them. I do not understand it. The occupational therapist makes a request for the appropriate chairs and tables for the children. The school then has to request them and the board must release the funds for them. In my child's case, the occupational therapist was at the school three or four months ago. My child is in a wheelchair and he needs the appropriate furniture at a normal height. I asked whether the occupational therapist's recommendation would cover every child in the class. He said it would not. The rest of the children are also suffering. Even the chairs and table are an issue.
Where and how is physical education supposed to be supplied in the school? There are no facilities. We have a caged-off area where the children have to play. There is no indoor hall. When do we get the space? When do we get the equipment?
Parents are still unsure whether they will be able to access the summer programme through the school. As parents, we understand that the staff are doing everything they can. The SNAs and teachers are breaking their backs to do jobs they are not paid to do. The NCSE is putting this work on top of them by not providing the therapies that we need. I apologise but I am very fluttery. Our children direly need the summer programme. It helps them with structure and routine. This is what they need. Our children will not be able to access this because of the strain on the teachers and SNAs. Why would they want to work extra hours when they are already doing more work than they should?
The NCSE is trying to push a school inclusion model project. In my opinion, and in the opinion of many others, the NCSE is teaching the teachers and SNAs to deliver speech and language therapy and to deal with the behavioural outbursts of children. It is not for individual children but in general. It is the same as what the HSE is trying to do with the parents. Rather than delivering individual therapies they are trying to teach the parents how to deal with the emotional, behavioural and cognitive needs of their children but it is in general. Recently I attended a sensory workshop run by the HSE. It was a three or four hour course. I was told that after I attended it I would get an appointment from the HSE in approximately three months' time.
They will probably see my child then, depending on how things are.
It is exactly what the HSE is trying to do with the parents, that is, train the parents to be the therapists, and the NCSE is doing the same with the teachers and SNAs within the school. They are also trying to enforce that unqualified teachers and principals supply and complete the assessment of need for our children. Where does this end? The teachers and principals that I know of have said they are not educated enough, when the results of this report are going to follow the child throughout their life. They say they cannot provide that because they do not have the training and do not practice in this area. It needs to be done by psychologists and professionals who practise in these areas.
Can the committee explain what aspect of our school is meant to be “appropriate” or what part of it is the special school, when we do not even have the resources that a mainstream school does? It is just another building where they bunch together our children in a hurry to meet a demand with little or no supports. Only in November 2022 did we access an appropriate sensory room - I emphasise the word “appropriate” – and only in January 2023 did we access an occupational therapy room that is still having work done, but we will not have an occupational therapist there to provide the occupational therapy. It is just a free-for-all. We need in-house therapies in order to make these work.
It is now 2023 and the school was opened in 2021. You are failing our children. Stop using them as trial runs. Professional medical reports have been made stating what kind of education our children will need and in what kind of setting they will need it. Provide it, stop wasting their precious time and give them the education they need so they can learn and grow to the best of their ability.
Thank you. There is one more speaker. We are over time but I feel it is important to give everyone an opportunity. We will have a short time afterwards for members to ask questions. We will continue until 1.25 p.m. before we break. As I said, there will be a photographer on the Plinth to get a group photograph and we will then have refreshments. I welcome the representatives from Tullydonnell Parents Association, Dr. Aoiveen Mathews and Ms Anne-Marie Ford.
Ms Anne-Marie Ford
Good afternoon. Thank you for giving us the opportunity to speak this afternoon. I am here with Dr. Aoiveen Mathews, who is a parent in Tullydonnell school. As to my background, I am the principal of the school. We have four early intervention classes for children with a diagnosis of autism. Autism is an area in which I have become very interested in recent years, along with doing my teaching. I have qualified with an MSc in neuroscience and psychology of mental health, and I studied especially the area of autism and the neurology of the brain of the child with autism. I am about to complete psychoanalytic psychotherapy, with my area of interest again being on the whole autism piece and looking at the individual child and therapies around that for children with a diagnosis of autism.
The Minister of State at the Department of Education, Deputy Josepha Madigan, in 2022 announced a review involving public consultation on the Education for Persons with Special Educational Needs Act 2004. Our parent-teacher group was formed to raise awareness of this review and to encourage submissions and active participation by parents, children and teachers, all in the context of members of our group having recent experience of the workings and practices under the existing legislation. In addition, arising from this experience, we seek to bring focus and critical attention to how children with and without additional needs are being very badly served and supported and, in some cases, are being emotionally damaged while having their learning impaired as a result of wholly inadequate support being provided in the classroom. From the outset, we remind all members of this committee that research has shown that the earlier the intervention for children with additional needs, the better the prognosis for future development leading to realising their full potential and integration into wider society.
Our school is a rural primary school with approximately 175 children and four early intervention classes for three- to five-year old children with a diagnosis of autism. Our collective experience of how supports have served children with additional needs when applied in practice has been very disappointing, resulting in a loss of opportunity for the individual child to integrate and realise their potential in a mainstream school.
In September 2021, three children with a diagnosis of autism enrolled in the junior infants class in this rural school. These three children had previously attended the early intervention classes and, up to the point of enrolment in the junior infants class, all the evidence confirmed the strategies, interventions and supports had all been very successful. We collectively had naïvely assumed that because the support had been provided for the early intervention process, these children would continue to be so supported as they commenced their journey in mainstream education. Regrettably and shamefully, this did not happen. They were denied the identified and appropriate targeted support required for intervention into mainstream education.
The school challenged this flawed decision both through the exceptional review process and subsequently through the appeals process. We were told in a somewhat dismissive fashion that we would have to redistribute our existing resources and that we could have a seminar to show us how this could be done. The net effect of this denial of essential support was that the school had to divert already scarce resources from children currently receiving support to give them to the three students enrolling in junior infants. One of the many consequences of this was that one student with significant medical needs had to do without any support for a full school year in order to provide necessary supports for the three new students to commence their mainstream education. Redistribution can, therefore, be translated into one or more students having to do without supports to which they are entitled and which enable them to integrate effectively.
Arising from this episode of very negative practice, a parents action group was formed and protests were organised outside the Dáil, with extensive engagement with public representatives, including the Minister for Education, Deputy Foley, and the Minister of State, Deputy Madigan. Finally, just prior to a planned protest outside the constituency office of the Minister of State, Deputy Madigan, the Department of Education commenced discussions with the group. This led to a delegation of five Department of Education officials from the NCSE, NEPS and the inspectorate coming to the school to interview staff, parents and pupils.
This delegation spent a total of four days in the school. Over the course of these four days, the parents, staff and pupils in the school shared very personal and intimate details of the children's needs, difficulties and experiences, both at home and in the school environment. In essence the parents were left begging, appealing for the support that their children so badly needed and, as citizens, were absolutely entitled to. The whole process and exercise was distressing, upsetting, demeaning and insulting to parents and children who were already facing and striving to overcome so many challenges. In summary, their experience as a result of the Department's approach was inexcusable.
It is worth noting that on the final day of the delegation's visit, we were told that the school had been failed by the system. We, as a group, do not want to see any other children in any other school failed by the system in this country. We ask the committee to note, and this is critical, that the end result of this whole process, which effectively covered one school year, was that in September 2022 the school was given two additional special needs assistants and one additional learning support teacher. The question must be asked why the exceptional review and appeals processes found no additional resource was required when, in reality, significant additional support was belatedly sanctioned. It is very clear that the procedures, policies and processes established under current practices are seriously flawed, unduly bureaucratic and very protracted, while being injurious and insulting to the children and parents they are meant to help and support.
These shortcomings can be summarised as follows: fundamentally flawed exceptional review appeals processes; lack of teacher training in the whole area of children with additional needs; and absence of oversights in placements with autism spectrum classes, leading to inappropriate placement in these classes. I am quoting the chief inspector, Dr. Harold Hislop's report for the period 2016 to 2020.
His inspectorate has found that too many children are being placed in segregated ASD classes when they could, with the correct supports, easily be integrated into the mainstream. Those supports are not being put in place. This leads to a shortage of places for those children who actually need and would benefit from them. Parents are being pressured into accepting placements in ASD classes because there is no guarantee of the adequate provision of required supports in mainstream classes. A lack of multidisciplinary supports in clinics and schools is resulting in children not accessing essential supports in a timely manner, thereby creating a barrier to individual children realising their full potential. Mainstream classes continue to be too large to facilitate the needs of all students.
I will now address the changes required. It is our collective and informed view that, to ensure this country fully meets is obligations to ensure all children are treated equally, a number of changes are required. These begin with an amended and updated Act that places the individual child at the centre of every decision and provides that child with all the supports necessary to allow them to reach their full potential and ultimately contribute to the economy and the society in which they live. In addition to this legislation, further measures are also required. All teachers should attend a nationwide training programme to equip with them with a broader knowledge base and the skill set necessary to support children with additional needs. Amendments should be made to the existing undergraduate and postgraduate programmes for teacher training to strengthen the knowledge base in this area. Supports should be provided for children transitioning from early intervention and commencement settings. These should follow the student as he or she integrates. This is necessary to allay the concerns of parents who currently feel pressured into enrolling children in autism spectrum classes even when they could thrive in a mainstream setting if provided with appropriate support.
Direct support should be provided in the form of multidisciplinary teams assigned to clusters of schools, following a similar model to that of NEPS. This would result in all schools having access to team members. Early intervention can take place there. That multidisciplinary team can come in early. Mental health issues can be easily addressed when such teams are in place. Early intervention is key. Human resources in schools should be improved. I refer to teaching assistants rather than SNAs. We need to look at the language we use when speaking about our children. This improvement would facilitate the full inclusion of children with additional needs while ensuring that all children have the optimum learning environment and experience. Teacher-pupil ratios should be improved to reflect European norms. This will ensure and facilitate the best learning experience for all students.
The review of the current legislation offers this country, and the members as legislators, the first opportunity in 19 years to address the shortcomings we have identified. We respectfully request that all members of this committee use their position as legislators to strengthen the legislation and ensure all policies, practices and processes are child-centred, child-focused and deliver the supports necessary to ensure the path to mainstream education is as easy as possible. This is a fundamental right for these children which, regrettably, is currently denied too often. In addition to this new legislation, every entity and professional working in the system must change focus so that the individual children have their needs met. This should determine all decisions. This will involve a cultural and system change that cannot be delayed any longer. I thank the members for their attention and for offering me the opportunity to talk here this afternoon.
We have gone way over time but I felt it was important-----
Ms Anne-Marie Forde
Dr. Matthews has one more thing to say.
I am going to have to move on to let members put a couple of questions. I will be quite honest; we have gone way over time. I apologise but I gave everyone as long as I could. I just want to give members the opportunity to ask questions. I will introduce my colleagues, both members of the committee and other colleagues who have asked to attend the meeting. Senator Wall from Kildare, Deputy Buckley from Cork, Deputy Ó Cathasaigh from Waterford and Senator Garvey from Clare are members of the committee. Senator Currie from Dublin, Deputy Ó Murchú, who regularly attends our meetings, and Senator Lombard from Cork have also come here to ask questions today. I will begin with the committee members. We have gone way over time so I will ask them to put a specific question. I will have to cut the session short at 1.30 p.m. I will give committee members an opportunity if they want to ask a question of any of the groups. We will start with Senator Wall.
While I do not want to hold up the meeting any further, I will first thank everybody this morning. This session has been insightful, worrying and frightening. Most of all, it has once again been educational for us to hear everything that has been said. The issue here is that we want to hear this and have it form part of our report in June. I have a great many questions but obviously we need to move on. One such question relates to the cost of having a loved one with autism. This comes up again and again. There is the cost of an assessment of need and the cost of teacher training such as Mr. Devereux had to go through. Something needs to happen here. We have spoken about carer's allowance and means testing. I do not know whether we want to put that as a question but, as a committee, we have to learn about the costs these families and teachers are facing. I have taken a great many notes today that we will need to go through as a committee but the first question I had was on the costs. Dr. Áine Roddy came before the committee a couple of weeks ago. She has done studies in this area. It really is about the costs these parents face for their loved ones. There is no doubt they will face them. Does somebody want to comment on that? We have heard a great deal of testimony today that will form part of our final report. Once again, I thank everybody for their time today. Their contributions were really insightful.
Will Mr. Devereux submit to the committee information on the costs he faced to upskill himself in his profession in the way he described? It might form a template for the costs teachers are taking on at their own expense to educate themselves. If he would forward such information to the committee, we would be extremely grateful.
I have an observation rather than a question. Committees often bring in experts to debate legislation but the witnesses who gave testimony today are the experts. They are the ones who have lived experience in this area. I have made many notes, as have many of us, and a couple of things have come up. Each and every one of the witnesses has a personal story and it takes a lot of bravery to come in here and tell it. The idea behind bringing people in like this was that we wanted people outside of here to see what the witnesses are going through. They are the gatekeepers of a broken service. We are very lucky that our committee does not play politics. We all take these issues personally. You can even hear it in our voices. We genuinely want to help.
I thank the witnesses. This session has been of great benefit to me and to this committee. As I have said, we are here to try to get things right. The only way to do that is to get expert advice. The witnesses have contributed to that today so I thank them again.
Similarly, I am not going to put a question. I am going to thank the witnesses for their bravery in putting across their personal experience as parents, service providers and teachers. The point of this session is that it is a public hearing in a very literal sense. We hear about these matters privately all the time. People come to us all of the time because they are struggling to access services or are seeking a place in a school come September and they are at their wits' end and tired of that daily struggle. I have three kids at home myself. I will fight to the last to get what they need but it is a lot easier for me because their needs are not as great as some of those I have heard outlined today. It is not fair to ask parents to go to the well again and again. Neither is it fair to ask teachers - I acknowledge Mr. Devereux's contribution - to go the well and act as gatekeepers of a broken system and a broken service, as Deputy Buckley put it. I thank the witnesses very much. Everybody here has heard these stories privately but the witnesses have come before the committee and contributed publicly.
Members are used to being here. We walk around this building every day of the week. It is difficult to walk into a chamber and give personal details. We felt as a committee that it was so important that the report we produce at the end of this process is not just about professionals or people used to walking through these corridors. The witnesses' voices and experience are central to the recommendations we will produce at the end. I have no questions for them, just heartfelt thanks for their contributions.
Speaking in public is a very difficult thing. I find intimidating and I have been a Senator for the past two and a half years. The first autism unit was started in my village of Inagh about 25 years ago. I am trying not to get very emotional. I am standing by a friend of mine, Dr. Susan Crawford. Dr. Crawford and her father started the first autism unit 24 years ago and she is still fighting every day for her son's rights. What disgusts me is that it never gets better. It just changes as they get older. It is never the case that she finally gets the resources and things are sorted. There is always another thing because her son is developing and growing older, which is despicable. A friend of mine became a lawyer because she was so sick of fighting for her son's rights. She studied law at night so she could fight for her son's rights, which is also disgraceful.
I am really embarrassed as a politician that the witnesses have to deal with this on a daily basis. We all know it is hard to rear a child at the best of times so I am deeply embarrassed that the witnesses have had to come here and put their laundry out to dry in the public arena to give us some inkling as to what it is really like for them. I will not make any promises because the witnesses have probably heard them all before. This committee gives me some glimmer of hope. Perhaps the next step is to get the Minister for Education and the Minister of State with responsibility for special education to come before the committee so we can finally get answers because we could go on just talking about these issues forever. It is great having a talking shops but it does not help the witnesses in any shape or form. I will make no promises but will try to do better at attending this committee.
I had to speak in the Dáil but I was here for most of the presentations. I thank the witnesses for sharing their experiences with us. I raised the issue in the Dáil with the Tánaiste. A census of the numbers across the CDNTs for 2022 is out this week. It makes dismal reading. It reveals a 43% vacancy rate across all CHOs with a vacancy rate as high as 65% in some teams. I am very concerned. The HSE needs a plan. This is a crisis, the Government needs to be pushing this and the HSE needs to sit down with the bodies that appeared before the committee the other day - the professionals who represent all the therapists. The HSE has never consulted them properly to see what the best way forward is. We need to increase the numbers going through our colleges but that will take a number of years. In the meantime, how do we help the children who need the supports right now?
We can look at recruiting from abroad. All those things need to be done. The recruitment process within the HSE is cumbersome and the HSE has done nothing to change it. The panel system does not work. It takes far too long. CORU is taking forever as well because, again, it is under-resourced. It has been given more work but fewer resources. A lot of issues need to be addressed and could be addressed to help improve things right now but this is not being done and there is no sense of urgency and crisis, which is not fair. I mentioned to the Tánaiste that we were meeting here when I was in the Dáil and that it was about families who are heartbroken because their children are being failed miserably by the current Government and the HSE.
Some witnesses mentioned the Disability Act. This Act needs to be reviewed and updated. It predates the UNCRPD in any event so it needs to be looked at through a rights-based lens but it also needs to ensure that service interventions are on a statutory footing. There is no point in having assessment of needs but no services. Somebody made a comparison with somebody going into hospital with a suspected broken arm, having it X-rayed and then being told that this is the assessment and "off you go, we won't give you any pain relief, a cast or anything else but come back to us in two years and we'll look after you.". It is the same thing.
I again thank the witnesses, many of whom I have met on different occasions in the House. It is always a pleasure to meet them and hear their stories because that keeps us focused on what we need to do. We have a lot to do but we will keep pushing and working together.
Deputy Tully mentioned the Disability Act, about which I feel strongly based on discussions we have had over the past nine months. It is an issue that comes to the fore. As everyone has mentioned, the lack of services is an issue. I call on the Government to review the Disability Act. Such a review needs to happen. We need to give entitlement to services to children and young adults with autism. Currently they are entitled to an assessment but they do not have an entitlement to the services, intervention and therapy they need. My child and all our children are entitled to this so I fully support a review of the Act. I am a member of a Government party but I call on the Government to review and change the Act to ensure we give every child a right to therapies, services and interventions. That has to happen.
I apologise for being late. I was meeting a Danish delegation but excuses are not much use to our witnesses. I took an interest in this issue because my son Turlough is autistic. People have come to me and said "you're Turlough's dad" so that is the reason they want to have a conversation with me. Obviously I am not shocked by what the witnesses said. There is acceptance across the board that they, their children and their students are being failed, which is not good enough. We know we need to look at the school piece, which has been dealt with in fairness. We are looking at probably a number of outlier educators who are here alongside outlier parents. I can only say really good things about my son's school. He is 14 and in first year. They are learning from him as much as he is learning in the school. We should all be in a better place but that is what works when everybody is trying.
Do we have all the supports? We know we need in-school therapies. We know the problem between assessments and interventions and that we need a significant recruitment drive but even if everything was done perfectly from today onwards, we are probably looking at four or five years before we have a sufficient number of speech and language therapists, occupational therapists and psychologists. Deputy Tully is right. A number of experts in their field appeared before the committee and told us there needs to be a conversation with them regarding what we can do in the short term and what are the best services we can provide. That will mean brokering and a real conversation with parents in the sense that we do not have everything we should have and we need to do our best and put that in place. In the short term, however, we can definitely do better than we are doing at the moment. We owe it to ourselves and children not to continue with the failures.
Fair play to the witnesses. It is wonderful to hear about support groups because in some cases, they are the bale and twine that keeps the engine going. They are keeping a huge number of families going, which is brilliant. We just need more of it. We need to do more and be better and faster on everything. People like the witnesses will make a real difference that will eventually lead to the change that is necessary.
As Deputies Tully and Ó Murchú said, we met an organisation representing occupational therapists, speech and language therapists and psychologists last Tuesday. When Progressing Disability Services was set up, the HSE did not meet these groups. Changes need to be made but they must be made in consultation with the people who will be doing the work.
I will not ask too many questions because of time constraints.
There are far too many examples of children's rights not being met. I find I am not shocked by any of the stories that have been shared today. I hear them in my constituency. I am not a member of this committee but I could come here every day and focus purely on special education and inclusion. Tomorrow is the deadline for submissions on the Education for Persons with Special Educational Needs, EPSEN, Act. If the witnesses would like to share any of their submissions with me, I would like to read them. It is clear the inconsistency across schools in people's lived experiences is one of the biggest issues we face. Parents can go to one school and feel their children's needs are being met, that they are heard and that the school is child centric, and then they can go to another school and it has some shockingly bad practices. Mr. O'Malley's story underlines how people in schools believe they are doing the right thing. People are trying but are ignorant about how to take an inclusive approach.
As shocking as it is that training is not available to professionals, the training must go much wider. It must be given to officials in Departments, to politicians and to every board of management. Someone who has a lived experience of special education should be sitting on every board of management. There are many intersectional issues. Senator Carrigy and I have raised the blockages to opportunities for education and therapies. There are even blockages in the courses with respect to the number of therapists. I have been told the panels for our CDNT are being blown up, so to speak, and people are being recruited abroad, but I have not seen the results we need to see. This needs to be one hell of a report. If it merely outlines the different cross-cutting issues, if it at least names them and lists the issues in one place, it will be a framework of or guide to what people need to focus on. This will take ages. The system is broken and children are suffering. I thank all the witnesses for their time. It must be a hell of a report and I know it will be.
Each of the witnesses has travelled to Leinster House today and each of them is fighting for their child. Today that is what they have done by coming here. They have given their children a voice. We have the opportunity and the honour to listen and it is not only us. There will be a record of today. I thank the witnesses because speaking about personal experiences is never easy. I have heard and listened to many accounts today.
I thank Senator Carrigy for his work on this committee. He has driven so much around this and I thank the committee. I sit on the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science and the Joint Sub-Committee on Mental Health. I am a guest here today. The education committee is considering the supports required in schools.
I come from Ballinasloe. I know it was mentioned earlier. There are people here from Athlone and from all around the country. As other Senators have stated, we hear about the challenge of having to travel, about the tiredness the witnesses spoke of and about having to do all this and look after their families and children and still having to fight. We deal with schools, try to support parents, try to advise them and as Mr. Devereux mentioned, we can get assessments but sometimes it is not the right assessment, for example, when we are not able to get a HSE one. We advise people to get private assessments to get their children a place. That is not good enough.
Our colleague Senator Seery Kearney spoke about the move of CDNTs from the HSE to Tusla. Disability is moving to the Tusla area of responsibility. Some of the things I call for include the streamlining of processes, using technology and smart ways of doing things. The HSE is currently dealing with many backlogs because of a lack of joined-up thinking. I would like to see and I call for smart ways of managing engagement with CDNTs and how they can get out to do assessments in a timely way. Many changes have been made in the past year or two years. We can see there are many challenges. That has been evident from everything the witnesses said today.
On the education side, I thank the committee for giving me the opportunity to speak here. The witnesses' testimonies are incredibly powerful and I want them to know that. All of them have given testimonies to represent their children, their communities and their towns. I am proud to be here and honoured to hear them.
I acknowledge the Chair's work. His nine months of work and dedication put in place a passionate committee that has done much good work. I acknowledge that. I also acknowledge the parents and advocates who came here today and put forward an amazing case about what is needed and what changes are required to ensure we have a system that is fit for purpose. It is obvious it is not fit for purpose. A report is coming on 1 June 2023 which it is to be hoped will be a template for change. Change is required for the services our loved ones need.
I am not being parochial but I compliment Ms O'Mahony's testimony which proved the geographical issue. To think a child might have to travel two hours each way to a special school is absolutely bizarre. It is unheard of in many ways. I have six-year-old twins at home who travel 20 minutes to school and they get onto the couch when they come back because they are exhausted. I do not know how anyone could go two hours on a bus one way and two hours back every day, five days per week. The system needs to change because it not serving anyone. It is not serving the family, the child or society. A line must be included in the report about the geographical need for special schools to be put in place. It does not make sense when I look at our geographical district. A line must state that schools must be allocated not only on population size but on geography. Otherwise we will be failing the entire system. I am sure the Chair and the committee will do a fantastic job of doing that.
It has been a learning curve. It has been a tough morning. I was texting my wife halfway through to tell her she has no idea how lucky we are in many ways given the testimonies we heard this morning. I acknowledge the testimonies and thank the witnesses for their time. Some of them have travelled long distances to give their testimonies and I acknowledge that. I thank the Chair for the opportunity to speak. I realise I am only a guest of the committee. It has been an informative morning.
I thank Senator Lombard. On my own behalf as Chair, I thank everyone for coming here today. People have travelled significant and long distances. As all members have stated, it was powerful listening to their testimonies. As a committee, we are charged with making a report to the Government on 1 June 2023. We are committed to that and to ensuring we include recommendations that will lead to change. I only listed one matter earlier, the Disability Act. It must change. I am repeating myself. The Government must review it. We need to give children a legal entitlement to therapies and interventions and not just to an assessment of need. They need therapy and intervention.
I sincerely thank the witnesses for coming today. We will hold another session which I will push back to start at 2.15 p.m. A number of self-advocates will come to speak to the committee about their experiences, including young adults in the workforce and young adults in Trinity College. A young neighbour of mine from Longford, Mr. Deasún Kelly, who is in first year in Trinity College will attend. In his own time he visited some national schools in Longford to tell them about his experience and inform other children in the schools about what it meant for him to be an autistic young person. The witnesses are welcome to come back to listen to that.
We will follow the lead of the ushers. They will bring us outside for a group photograph and then we will go for refreshments.
Good afternoon, everybody. I welcome you to this public meeting of the Joint Committee on Autism in the Chamber of the Seanad, the Upper House of our Parliament here in Leinster House. I warmly welcome all the self-advocates and representatives from various parents' organisations.
I thank the Cathaoirleach of the Seanad, Deputy Buttimer, and the Leader of the Seanad, Senator Chambers, for arranging business today such as to allow this meeting to take place. This committee is due to report on 1 June and make recommendations to the Government on changes. Those recommendations will be informed by listening to our guests' views and those of all organisations. More important, we want to hear people's lived experience and make recommendations for changes they feel need to be made in the system.
I wish to read a note on privilege to explain some of the limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. They are 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 the person or entity. Therefore, where statements are potentially defamatory in respect of an identifiable person or entity, witnesses will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
I thank everyone for attending. I will call them in the order in which they wish to make statements. They may make the statements in their own time but we will try to limit contributions to five minutes, if possible. Following the contributions, members may ask any questions they have for anyone. If guests feel they wish to answer or comment, they may indicate that and then I will allow them to do so. We will first hear from Ger and Mark Kenny, a mother and son. I ask them to make their opening statements and comments, reflecting the points of view of a parent and son.
Ms Ger Kenny
Hi, everybody. My son Mark will speak. He has his statement prepared. He is going to speak about what his life is like as an autistic adult.
Mr. Mark Kenny
My name is Mark Kenny. I am 21 years old and I am autistic. I live in Dublin 15 with my parents, my sister, Aisling, and my brother, Shane. I was diagnosed as autistic when I was four years old. I went to an autism class in junior school and transitioned to mainstream after 14 months. I was happy in mainstream and had access to a special needs assistant, SNA, who helped me in school every day. Secondary school was my favourite. I had six great years there, with a shared SNA every day. The school put different supports in place for me that helped me to navigate my way around each day, cope with transitioning between classes and do school work. I did the leaving certificate applied examinations, which were great for me as they took off the pressure associated with sitting the leaving certificate exams. During my fifth year, I had to look for work experience. Owing to my love of movies and with the help of my tutor, I approached the ODEON cinema for work experience. It gave me the hours that I needed each week. After a month there, I was offered a Saturday job working a six-hour shift. I was really happy with that. Now, over four years later, I am still working there and am a valued member of the team. I feel really accepted in the ODEON by the staff and management. I love going to work there every Saturday. I was excited leaving secondary school. A new chapter was waiting for me.
I started a course in a post-leaving certificate, PLC, college to study computer systems and networks. The college said I could do the one-year course over two years, which was great. This year, I am doing a course called Business in Tourism, which I am enjoying. I have a reduced timetable and am going to college three days per week. There is a learning support hub there that I call into most days. I feel really supported in the PLC college. I am linked to Gheel Autism Services and have a support worker called Tara whom I meet twice a week when I am not in college. Tara helps me to become more independent. I am more confident now. I love to go on the bus by myself to college, to my job and to meet Tara.
My mother and her friend Rosaleen both set up a club called Little Seeds Arch Club nearly ten years ago for children and teens with autism in Dublin 15. We meet Mondays and Thursdays and do many different activities, such as basketball, fun and fitness classes, bowling, learning to cook, learning to shop and going to restaurants. I love going to my club each week. At Little Seeds, I can be myself. I have made many friends there over the years. After college, I hope to get a job. Hopefully I will have more hours in the ODEON cinema and maybe a job in computers. Autistic people can achieve their dreams and be successful in life if they are understood, supported and accepted by society. My future is bright.
Well done, Mr. Kenny and Ms Kenny. I now call on Mr. Deasún Kelly. For the information of those present, Deasún is a neighbour of mine from home in Longford. He is in first year in Trinity College studying maths, I believe.
Mr. Deasún Kelly
Maths and music.
Maths and music. Over the years, Deasún has been a very strong advocate and has actually gone into many national schools in Longford to speak to pupils about his experience. I commend him on what he has done. I will now allow him to make a statement.
Mr. Deasún Kelly
Good afternoon, everyone. I thank the members for inviting me to the meeting of this joint committee.
My main concern regarding State supports and services for those on the spectrum pertains to the provision, availability and consistency of mental health services, as well as the lack of education on autism available in schools. Autism is a complex condition that necessitates intensive support from psychologists, occupational therapists, speech therapists, resource teachers and SNAs to be provided consistently in order for everyone in the spectrum to thrive. In my experience, State provision of such services has not met the need.
I received my diagnosis of autism at the age of seven, when I was attending first class in Longford. I was diagnosed by a single psychologist operating in the county's medical centre. This same psychologist was assigned to the hundreds of other children with or suspected of having autism. Following my diagnosis, appointments were few, with months or even years between them. The psychologist was overworked, with their time spread thin between the many children to whom they were assigned. As a result, they were unable to provide the consistent support clients needed.
Seven years later, when I was in my fourth year of secondary school, this same psychologist urged me to write about my experience of living with autism so that in lieu of receiving all the support they need, some children may at least be able to take comfort in knowing there are others who have gone through what they are going through now. It was, and continues to be, a similar story with many other members of the multidisciplinary team in County Longford.
I am sharing this story as I think it highlights the necessity for an expansion of the mental health and occupational therapy, OT, services provided in Ireland. We on the spectrum require stability and consistency in both the people providing our supports and the regularity with which we see them. The current infrastructure simply cannot provide the stability and I see this as a failure on the part of the State. Similarly, throughout my time in primary school, I was sent to a different resource teacher each year, many of whom were not trained in dealing with children on the spectrum. The school, like the medical centre, was understaffed and unable to cater to the needs of its pupils on the spectrum, necessitating the principal and other teachers not trained to help children with autism to undertake the duties of a resource teacher. For me, resource hours were inconsistent, with no predictable routine or recourse for my time, which caused me great anxiety, especially during my early years of school.
It is also worth mentioning that none of the three schools I attended had a sensory room during my time there. While more and more schools are now creating sensory rooms and facilities, I believe it should be mandatory for every school to have at least one sensory room and a separate area for children to run off their energy when over-stimulated and that is covered in case of rain.
The fact is that the number of children diagnosed with autism per 100 children is increasing and government services need to expand to meet this increased demand for them. I believe the focus should be on diagnosing children as early as possible so that supports can be put in place both at home and at school from a very young age. I was lucky to have had a mother who was a resource teacher by profession and was able to support me even before I was diagnosed. However, this is not the reality for the majority of young children on the spectrum whose parents may be unaware of their autistic characteristics or more commonly, who exist as a name on a waiting list not to be diagnosed for years while they remain misunderstood and frustrated.
I am not sure whether I should read out all my concerns at this point.
If you wish, yes.
Mr. Deasún Kelly
I appreciate that it will take time to expand such services, however, requiring more trained professionals than may currently be available in the country. In the meantime, I believe that the State should focus on educating students, parents and teachers on autism with an aim to destigmatising the spectrum. In my experience, many of the most insidious difficulties associated with autism come not from the difference itself but from the ways in which the label "autistic" can affect the way people on the spectrum are seen, and how we see ourselves.
Based on my experience, having spoken to many teachers, students and parents while giving talks in schools around the midlands, the common conception of the autistic spectrum is not widely understood. Many with whom I have spoken have a preconceived notion of what autism is that is often based on their past experiences, not appreciating the great variety of ways in which autism can manifest itself in those on the spectrum both positively and negatively. It is overwhelmingly perceived as a strictly negative disorder, with parents even shuddering at the thought that their children might be on the spectrum, while others are embarrassed that their children will be seen as different.
The majority of primary school students with whom I have spoken had heard of autism but often little more than that, with those who were more knowledgeable almost always having a relative or friend openly on the spectrum. During my time in primary and secondary school, we were never taught about autism except for in my final year of secondary school when an AsIAm representative gave a talk. I find this frankly shocking as almost every class and year group has at least one student on the spectrum, and very often more than one. Their classmates are entirely oblivious to the challenges they face, potentially exacerbating sensory difficulties or forcing them into uncomfortable social situations. Autism education should not be left to self-advocates alone.
As a byproduct of this lack of education on autism, bullying of students on the spectrum is extremely prevalent. In my secondary school, autism was essentially a slur among some, with those known to be on the spectrum being isolated, mocked and taunted. People on the spectrum stuck together as others would not take them seriously, while teachers were oblivious to their difficulties. A diagnosis was a source of shame, something that I for many years felt the need to conceal for fear of being made fun of or that my friends would reject me. During my first three years of secondary school, I missed roughly half of the school years due to anxiety and inability to regulate my emotions. Thanks to my mother, there were some supports put in place for me but I felt too ashamed to use them.
I believe the State must make an active effort to normalise autism. The conception of autism as a bad thing must be torn down and in its place must be built the understanding of the unique strength that often accompanies a diagnosis while fostering empathy for the difficulties. This must be done from primary school onwards, perhaps through autism days and explaining to students why one student sometimes has to leave class or use fidget toys. Parents must be educated too, for if they harbour shame or embarrassment about their child's diagnosis, it is likely that their child will feel the same. As things are, when autism is rarely discussed in class and at home, there is an unspoken understanding among students on the spectrum that it is something shameful that should be hidden at all costs. This shame needs to be eradicated. Education should aim to promote autism as yet another aspect of one's identity; not positive, not negative, just the way it is.
I call Ms Evie Nevin.
Ms Evie Nevin
If it is okay, I will stay sitting down. The reason I have the stick is I have Ehlers-Danlos syndrome, which is quite common. There is a lot of crossover between autism and Ehlers-Danlos syndrome. I was adopted and, therefore, my adopted family did not have any information about my biological family and my background or anything like that. The diagnoses of Ehlers-Danlos syndrome and autism were quite surprising. I was diagnosed as autistic when I was 33; I am now almost 36.
When I was growing up, I struggled quite a lot. Even as a toddler, I would get overwhelmed and do things like bang my head off the wall. Doctors put it down to the fact that I was deaf in one ear and thought it was the frustration of not being able to hear anyone. We know now this was more likely to do with being autistic and not being able to control my emotions or regulate myself.
I struggled in school. I was always deemed to be highly-strung and overly emotional when, in actual fact, it was autism, and I was not being neurotic and overly emotional. When I was approximately 14, my sister said to my parents, "I think Evie is autistic". My family at the time were worried that if I had that diagnosis, I would be written off and people would not give me opportunities.
I have overcome many of the things they were worried about, not is spite of autism, but because I am autistic. I ran for election in 2019. I became chair of EmployAbility in west Cork, which helps autistic people get into employment. I am part of the local Access group. All these things were because I am autistic.
There is this kind of misconception sometimes that autistic people lack empathy. I think we feel it a lot more than people realise. One thing I have found over the years since my diagnosis is that people say to me that I must be high-functioning or low on the spectrum. People have this conception that the spectrum is linear when it is not. It kind of diminishes and belittles the experience of autistic people when people say someone is low on the spectrum or high functioning. I have found that girls and women are particularly good at masking, and people tell me they would not have known. It is years of having to hide who I was because of people thinking Evie is highly strung or overly emotional and will cry at the drop of a hat. It really affected my self-confidence then. I was trying to mask and make myself look like a neurotypical person. Had I been accepted as who I was, however, my confidence would have been much better as a child. I was really down on myself. People often used to say to me that I did not make eye contact as a child because I was not confident in myself. Now, we know it was probably because I am autistic.
The main things I have learned over the years since being diagnosed is that people are far more patient now that I have a diagnosis. People are much kinder now. It is almost like you have an excuse but, no, that is not how it works. The other thing relates to my children and other children in the Gaelscoil.
I am in Clonakilty, where we have an ASD unit in the Gaelscoil, which is very good. We are campaigning to have a larger school in west Cork so children from playschool age through secondary school can continue and there will be consistency and routine for them. There is a lot of work to be done on that. I hope Government will assist the west Cork special school group, some of whom were here this morning for the parents group. They are hard-working people and I hope the Government will assist them in getting the school. That will be vital for ensuring the children do not feel othered, which happens quite frequently.
Mr. Nicholas Foote
I am an adult with autism. I will speak on autistic access to legal services and the Courts Service in Ireland. I have had experience accessing legal services. People in Ireland have the right to legal representation, which is difficult to get hold of as an autistic person. It is difficult to fit into that system.
In navigating legal services in Ireland, I found at first there were zero supports in place. There is no legal point of contact for any autistic person to engage with the legal system. That causes problems. Even the first step, if someone is entitled to legal aid, of going through a legal aid application might prove too challenging for autistic people. There is a lot of form gathering, looking through finances, providing evidence and being organized. Some autistic people might lack those skills and require assistance. If they get the paperwork wrong, there is little tolerance shown in the court. If help was provided with the paperwork, there might be more success with that.
The processes to respond to or instigate legal services are too complex for the majority of autistic people. So many things are going on at once. They have to see this and that professional and compile reports. It is very difficult for an autistic person to do that alone. Help is needed in that area. Once the solicitor is on board, there is evidence gathering. Executive functioning issues are common among people with autism. That makes evidence gathering almost impossible. Many autistic people also have attention deficit disorders, so it can be a harrowing experience to go through all this evidence gathering and it is difficult for them to do so. Once that part is done, when they enter the hearing there is less chance they will get a fair hearing because they have not had help in gathering and indexing the evidence to be ready for that day in court.
On the experience an autistic person might have in court, many will not be able to even enter the court room. There is no assistance for them, such as a familiarisation beforehand, being told what processes to expect like the order of the day or being told the way the questions will be asked of them as witnesses. I have been in the witness box and experienced a mental shutdown. I have not been able to answer questions properly and it has not gone down well. If there was an advocate there to help, perhaps it would not have been a problem in the first place. Cross-examination can easily cause a shutdown or even a meltdown in court. I have not had a meltdown in court, but have had afterwards, especially without familiarisation to the process.
Anxiety caused by autism or associated comorbidities can easily become a problem when waiting for a case to be called or heard in court. I have found there is too much stimulation in the courtroom to be effective by the time my case is called, which tends to be in the afternoon. It feels like looking through a kaleidoscope while listening to proceedings in a foreign language I barely understand. By the time my case is heard, I can barely grasp the questions I am being asked and am not capable of providing a full statement.
It seems there is a big discrepancy between judges. Some are kind to autistic people, while some have no time for them. I do not know what can be done about that but it is something I have experienced. There are no rooms in courts that are autism-friendly. Solicitors sometimes resort to speaking with clients in hallways with many distractions and stimuli that autistic people can find overwhelming. They may not even understand what they are being told. They may be nodding along and not grasping the concept.
I have some ideas to remedy this. First, we could look at an autism application service for legal assistance that sorts whether autistic people are eligible by helping them sort applications and financial paperwork and, if they are eligible, helping fill out a summons if they are the instigator of the case; second, a one-stop shop for autistic people to be matched with a suitable solicitor who has received some basic autism training, even a day course to start with and maybe more in the future; third, a service to provide familiarisation training for autistic people, such as a trip to the courtroom on the evening of the day before, when proceedings are complete. The courtroom could be kept open to give them a familiarisation with it so they know what to expect the next day. It would be fresh in their minds and they would not sit there panicking; fourth, provision of counselling to autistic people to cope or of advocacy in the court for their additional needs; and, fifth, an aftercare service which is able to make referrals to other services. For the bigger court cases that might be life changing, they would need follow-up supports.
Thanks very much. I will let in Deputy Ó Murchú on the legal system.
My point is specific to legal aid. I know this because I asked the Minister for Justice a question on it recently. It is being reviewed. A public survey closed on 28 February. In their terms, they have commenced that part of the consultation for hard-to-reach groups. I agree on forms, thresholds and so on, but If a submission was put together on the legal aid process, we could make sure that reaches the Minister, Department and review group. That would be a worthwhile piece of work.
I ask Mr. Foote to put his concerns to the clerk to the committee and we will organise that.
Mr. Nicholas Foote
Thank you.
I acknowledge Roisin Deery, our diversity and inclusion officer. We have spoken of training, etc. We have had a number of meetings in recent months on Leinster House as a complex. More 1,500 political and non-political staff work here. We have agreement from the Houses of the Oireachtas Commission to roll out training for all staff, which will be taken with AsIAm in the coming months. On 26 April, we will have an information day in the Ceann Comhairle’s office for all staff in Leinster House to roll out that training. By 1 June, please God, Leinster House will be one of very few government institutions worldwide accredited as an autism-friendly building.
I thank Roisin for her work. I also thank Mr. Harris, Ms Ferris and all the team who are working with us to make that happen. It is important that we in Leinster House lead by example.
Ms Amanda Fox
I am here in personal and professional capacities. For the past seven years, I supported autistic adults in Cara, an autism support service in Waterford. A couple of years ago, one of my clients said to me, "You are autistic, too." I replied, "I am not autistic; I am neurotypical." I had a think about it, processed it and realised that my client was correct on a few points. In the past seven months, my two children and I now have diagnoses of autism and ADHD. We are a fully neurodiverse family at this stage. I am here to support two of my clients but also to speak about some of the major gaps I have seen in my life as an autistic adult, though I have only been aware that I am autistic for a short time, as well as through my work.
The first issue is the application process for disability allowance. The process is far too complicated. It takes me, as an expert, six sessions with an autistic individual to get the information and to get the individual to gather the documentation that has to be submitted. As an autistic expert, I write a professional support letter to go with the application. Even then, it is often the case that the application is rejected and we have to repeatedly go back. It takes months, sometimes years, for the person to get the financial support to which he or she is entitled. It is very distressing for those applicants. People end up in debt and with nowhere to go. That is definitely something that needs to be changed.
I am sure assessments have been discussed already but the only way adults can currently access an assessment is privately. Many of our clients do not have the money to fund that. It is a very difficult process when they are not able to access supports either. They cannot get the financial and other supports they require and that means they are alienated from society on a much bigger scale. I am not just talking about the psychological assessments to get a diagnosis; I am talking about occupational therapy assessments, which are very important because all of us have some kind of sensory requirements. Many of us are not even aware of those requirements. I was 46 when I was diagnosed. I have masked for so long that I have no idea about my sensory requirements except that I know that I am very irritable for most of the day and, by God, my husband bears the brunt of it at night, although he deserves a lot of it. There are also psychiatric assessments. There are a lot of co-occurring diagnoses with somebody who is neurodiverse and that sometimes needs psychiatric assessment and supports.
Reference was made to the links into mental health services. Unfortunately, as soon as a person receives an autism diagnosis, the mental health services tend to shuffle the person out of the queue and refer him or her on to other services. Although we, as an autism support service, are delighted to keep supporting our clients, there are areas in which we cannot support them but, rather, need the mental health services to do so. If the mental health services are not willing to do that, they should make sure autism support services are funded with psychiatrists, psychologists, occupational therapists and educational psychologists. Most autistic people have co-occurring things like dyslexia and dyspraxia for which we need educational supports. Many of us may have struggled through school and are now going back to college at an older age and still need those assessments and supports.
As regards housing, there is a massive gap. Most of my clients have been on a housing list for seven or eight years. Ideally, going forward, specific housing, such as apartment blocks or whatever, should be built. Even those who are very independent and can live in an apartment will need some kind of maintenance support workers to be available to them. We have bad days when we burn out or melt down and, if we cannot cope, we need a professional with whom we can link in for the small stuff, such as where to find a plumber.
When it comes to driving, the situation is not set up for us whatsoever. Of course, if one can afford an automatic car, that is fantastic. There are still problems relating to the driver theory test, however. I do not know if any members have sat that test lately. The questions are completely overcomplicated and use big words unnecessarily. After all that, they throw in multiple choice questions, which are problematic for an autistic brain. An autistic person may read the question and think that he or she knows the answer but then three of the four options are very similar and the person decides he or she does not know the answer. The only accommodation one gets get for the driver theory test at the moment is extra time and a quiet room. That is not what we need. We need the questions to be completely revised or, at least, to have an interpreter who can tell us exactly what the question means. As regards the driver test itself, there are not really any extra accommodations apart from a little extra time being allowed. It is not always sufficiently clear for us. The tester may tell the driver that he or she will be turning left at a particular point. We need people to be much more clear and focused and give us a little bit more processing time.
In the context of education, I refer to level 5 QQI accreditation and post-leaving certificate, PLC, courses. I recently found out that many of the adults in Waterford with whom I deal who have late diagnoses and were trying to access a level 5 PLC course are only entitled to the accommodations they had while in school. I do not know if that is the case across the board. Of course, as they were not diagnosed in school, they do not have any accommodations. That needs to be considered because it means that people are being excluded from education. In general, the colleges offering courses at levels 7 and 8 are very good. They meet with the individual, see the new diagnosis and then put accommodations in place. When it comes to exam questions, however, they are not set up for us in any way whatsoever. The questions are over-complicated and, half the time, autistic people do not know what the questions are asking. A person who has great potential could come out with very low marks or having failed because he or she has misinterpreted the question completely.
On transport, I have clients who need support dogs but they have fallen through a gap. They are not eligible for such dogs and cannot travel as a result. A client of mine very cleverly trained herself in animal training and completely trained her dog as a support dog but, because she does not have the correct paperwork, she cannot travel. She is isolated in her small town because she cannot travel anywhere without her support dog.
It is very difficult to access employment. The traditional ways of accessing employment, such as interviews and application forms, are not autism-friendly. A person can even be marked down on eye contact, body language or facial expression. Those are all things with which we struggle and of which we are not even aware much of the time, especially if we had a late diagnosis. I thank the committee for its time.
I thank Ms Fox. I take this opportunity to acknowledge Mr. Mick O'Brien, whose surname escaped me earlier. He is access officer for the Houses of the Oireachtas. He is working with us and was involved when we were doing the audit of Leinster House and identifying changes to the facilities here to make sure we get accredited. I acknowledge the work he is doing.
Nem Kearns
I thank the committee for inviting us to appear. I am joined by my colleague, Aoife Sheridan, and we are representing Neuro Pride Ireland. It is a national cross-neurodivergency disabled persons' organisation. We operate on an entirely volunteer-led and unfunded basis. Among the activities or services we provide are regular social events and educational and training opportunities. We create educational material for neurodivergent people, their families and professionals. We also undertake a large amount of advocacy, as well as holding an annual festival which runs up to Neuro Pride Day, marked on 8 August each year.
We are delighted to hear that the committee will be receiving training from AsIAm. That is a positive step that we applaud. It is essential that training on autistic experiences comes from and is led by autistic people. There are some incredible and expert autistic-led trainers available, such as Thriving Autistic, as well as AUsome Autism Training, which is based in Cork, that offer accredited training to teacher, speech and language therapists and other professionals. There are services out there. Unfortunately, I have undergone and seen in use autism training that relies on outdated and debunked misconceptions. Such training perpetuates the misconceptions, misinformation and some of the stigma that greatly affects the lives of autistic people. It is good to see that there is a growing acknowledgement of the role autistic people and our representative organisations have in communicating our needs and experiences.
There are a number of areas I would particularly like to highlight as cross-cutting and urgent across the life cycle of autistic people. One of these is actually a matter that was highlighted by the Joint Committee on Disability Matters in its recently released report on aligning disability services with the UNCRPD, which needs to be the gold standard for all interventions and supports. The report highlighted that there are significant human rights concerns about the use of behavioural interventions practices, which was widespread across our educational therapeutic services. There is mounting evidence that these practices fail to uphold disabled children's and adult's rights and cause significant long-term harm. Children who are exposed to these practices are at high risk of death by suicide and are up to 86% more likely to develop complex post-traumatic stress disorder, CPTSD, than those who were not. When we speak of the high rates of anxiety, depression and suicidality among disabled people, which contributes to the suicide rate of between nine and 11 times higher than the general population, we fail to acknowledge and act on the causes of this reality. We need to hold rigorous standards for the therapies to which we expose autistic children and adults. We need to combat the prejudice and exclusion autistic people face. It is unacceptable that CAMHS around the country refuse to support children in crisis on the basis of them having an autism diagnosis.
We need to do better. We need to listen to the children's rights committee and urgently ban the use of restraints and seclusion, which are overwhelmingly used against neurodiversity children, particularly those from minority ethnic backgrounds. We are concerned that an organisation with hundreds of child abuse charges outstanding against it has been granted permission to run a special school for autistic students. Approximately 80% of autistic girls are subjected to sexual abuse before the age of 12. We need much greater regulation and oversight of people and organisations providing services to autistic and all disabled children.
We need instead to invest in neuro-affirmative supports that autistic people need and want, particularly supports fundamental to autonomy and dignity such as access to augmentative and alternative communication, AAC. We need to centre the views of non-speaking autistics themselves, ensure autistic people are fully included in the institutionalisation strategies, and prioritise the disabled person's organisations, DPOs, in all decision-making processes as an essential requirement to implementing the CRPD.
Ireland has the highest rate of unemployment and one of the highest rates of consistent poverty for disabled people in Europe. Autistic people are overrepresented in homelessness and prison populations. Among the factors that cause this - my colleague Ms Sheridan will speak more on the employment piece - is the means-testing of disability payments and supports, which keeps disabled and autistic people in lifelong dependency. It restricts our rights to independent living and equal social and political participation.
Financial dependency is also the single greatest contributing factor to the experience of abuse. Autistic people are subjected to horrific levels of violence and abuse. Nine in ten autistic women have survived sexual violence and more than 90% of autistic people have been subjected to repeated interpersonal violence. Despite this, the majority of refuges and abuse support and advice services are not fully accessible and funding has not been provided for them to receive training necessary to allow their staff and services to support autistic people and make their services accessible.
Autistic people also experience other forms of marginalisation and exploitation and are part of all the marginalised communities. Ms Sheridan will also speak about some of the aspects of how racial and gender inequality impact autistic people and the experiences of the approximately 70% of autistic people who are also members of the LGBTQ+ community, particularly in regard to assessment and accessing services, education and employment. I thank the committee.
Ms Aoife Sheridan
I thank the committee for having me. I will touch on a few of the points Nem made. I will also highlight the inaccessibility of adult autism assessment. I was diagnosed at 22 years and I paid €800 to be formally diagnosed, which is a much lower rate than the average. It can cost up to €2,000 to get a diagnosis. The importance of a diagnosis in a younger person's life, when they are slightly older than 18 years, is that it means they can access services within universities. I work in a university and people cannot access support services unless they have a diagnosis. This excludes a large population from access to support services in universities. This extends to employment. Last year, I went through an needs assessment for my job. As I said, I work in a university and, as such, in the public service. Although it was due to be entirely painless, I still had to go to a doctor who had very little information of or knowledge of autism. I had to prove that I was autistic enough but not so autistic that I would be unable to do my job. That was a very traumatic experience for me. Ultimately, I knew more than the person who was assessing me about my experiences, my capabilities in my job and also with regard to the accommodations I required such as ear plugs, breaks and clearer communication and so on that would help me with my job. The important point to acknowledge when we discuss these things is the intersectionality of these issues.
Nem discussed how women are underdiagnosed, in particular, how ethnic minorities do not have access to diagnoses and are also being underdiagnosed. A large proportion of the autistic population are trans, non-binary or gender non-conforming. Many of these people often try to access gender-affirming care, which we know is a massive issue in this country in general. Gender-affirming care is very inaccessible and hard to come by but if a person has an autism diagnosis, which, as we have just discussed is wonderful in terms of getting accessibility and accommodations, it can actually be the reason someone can be denied gender-affirming care. People see us as autistic first and therefore they dehumanise us and do not believe we can make up our own minds on our gender and sexuality and what we need going forward with our own healthcare. They essentially infantilise us.
As I mentioned, ethnic minorities and women experience underdiagnosis, which is a major issue. Going forward, we need to get more education and neuro-affirmative care in place. I spend €90 per week on a therapist. That is how much it costs per session and this is one of the only neuro-affirmative therapists I could find in this country. I am privileged enough to be able to access that service but most people do not have access to it. There are not enough public mental health services available, in particular for autistic adults, and that is a massive issue. I thank the committee.
Mr. Naomhán Mhaonaigh
I realised I was autistic when I was 15 and from that moment on, I tried to pursue getting a diagnosis from a GP. I talked to my GP and I have changed GP since then. Everyone was like, "No, don't do this, you don't want to do this and you don't need another label.". I am transgender. People would not look past their own prejudices to see that this was something I needed to help get access to supports. I left it for a while and eventually, having missed years of school because I am autistic, I realised in college that I did not know how to cope and would need greater accommodations than I had. I pursued getting a diagnosis which my parents had to pay a lot of money for because there is no pathway for adults to get a diagnosis. I then got access to occupational therapy in college which was amazing. They did not mention that it only lasts for the academic term, which means that once summer rolls around or there is a break, the services essentially end. I went through having my best year in college because someone was sitting down with me and helping me through things for the first time in my life to having to go through a summer with barely any routine. I tried to get so many jobs. There was one particular job and while I cannot prove discrimination, I can tell I was turned away because they figured out I was autistic. I had chose to not disclose because my occupational therapist said it was probably not worthwhile because I would not be able to prove if they used it against me.
I feel like I could have been identified much earlier if any of my teachers had known what was going on. In school I am compliant - I guess that is the best word - and I would do what I was told. I would do my homework on time but then when I went home my parents basically had a different child.
I could not cope with anything after school. My mum sat with me to do my homework most of my life. She came to nearly all of my appointments until I was 19 because I needed that support and I was not going to get it anywhere else. I am lucky that my parents are sufficiently financially privileged that my mum could do that but that is not the case for other people and there is no support for them. I do not know what else to say.
Take your time.
Mr. Naomhán Mhaonaigh
There needs to be education for teachers because some of the treatment that other people in my class got because they were loud or could not sit still was horrific. I watched that and knew that was how I would be treated if I behaved how I was.
I engaged with mental health services between the ages of 13 and 20. I am 21 now. Nobody knew what to do with me so I was bounced around. I attended Jigsaw but it is only for minor issues so the people in Jigsaw tried to get me into CAMHS. I finally got into CAMHS when I was 18 but was told CAMHS no longer gave autism diagnoses. I was discharged because of Covid-19 and there was no follow-up. I eventually got into an adult mental health service and after 15 minutes, was told to leave and go to disability services. There is nowhere for me to go. My parents have paid for me to do private therapy but the therapists do not know what to say to me. The chances of finding a therapist who is informed on autism and transgender issues, because I am transgender and would like to discuss that occasionally, are basically zero. My mum has been my carer and therapist for most of my life. I applied for disability allowance and it was one of the most stressful things I have ever done in my entire life. It took me nearly six months to fill out the form and my application was denied. I know I should have pursued it and gone further but I did not know what to do after that. So much of all the public services we have are completely inaccessible because it takes so long to fill out the forms. Nobody answers the phone. Nobody wants to talk to you.
The ability is there to train people to not have these prejudices, especially in education, mental health and physical health. We can train people early enough and intervene so that their first and only experience is not that autism is a terrible thing. There is so much shame around it that people do not want to engage and parents do not talk about it. I have family members who are also on the spectrum but it is never talked about. It is always seen as a bad thing. There are organisations now but when I was growing up, there was very little positive representation of being autistic and having a job somewhere that you can progress. Many companies take people on but do it so they can point to the one person with a disability they hired and feel great. That is the wrong reason to do it. A lot needs to change to make anything you engage with in public accessible. You should not have to beg for things to which you are entitled. You should not have to fight all the time. It is so simple and easy to change these things but nobody wants to take responsibility for doing it. That is all I have to say.
Well done, Naomhán. Next we have Darragh and Rosaleen.
Ms Rosaleen Cullivan
I am here today to support my son, Darragh Cullivan, who will speak about his life at the moment. He has a statement to read.
Mr. Darragh Cullivan
Hello, everyone. My name is Darragh Cullivan, I am 20 years old and I have autism. I was diagnosed with dyspraxia at the age of ten. Dyspraxia is a developmental and co-ordination delay that can affect your balance and co-ordination, and the planning of everyday tasks. At the age of 13, I was diagnosed with autism.
Primary school was a happy time for me. I had some good years with some good friends to whom I still talk today. I also met some great teachers. One of my teachers did summer provision with me for three years. We did a lot of fun activities, such as learning how to play hurling, and going out to many different places, including tours of the Aviva Stadium and Croke Park. Summer provision was very important because it got me out of the house and taught me many of the life skills I have today. I would highly recommend it to anyone if they have the chance to do it.
In 2015, I started secondary school and left some of my best friends behind because they went to a different school. This was a big change for me mentally. Secondary school was not easy for me because I encountered a lot of bullying in my time there. I felt like there was no one to help me because none of the teachers were appropriately trained to deal with autism. I had a shared special needs assistant, SNA, during my time in secondary school who would try to deal with situations of bullying by telling off the different people who were messing in class, but it would only encourage them to get back at me. They would take it out on me instead of stopping what they were doing. It was tough. I struggled with my mental health a lot when I was in secondary school and had a lot of different suicidal thoughts when I was there. At examination time, the pressure really got to me and made me not want to go to school because there was no one to support me. The teachers did not support me. My SNA maybe did help but at times, he was no help either. It was a very hard time for me. This may sound a bit strange but the best time for me was when the Covid-19 pandemic hit. It came just before my leaving certificate examinations so I did not have to sit the examinations. I almost fell the down the stairs with enjoyment when I found out the examinations were not going to happen and I could take my predicted grades and that was all I had to do.
I felt that I never made proper friends and got excluded a lot in school. The one thing that kept me going was the Little Seeds Arch Club, run by my mum and Ger Kenny. It was set up in 2013 and Mark Kenny and myself are the two original members from day one who are still in the club to this day. We are going strong, nearly ten years later. I made a lot of friends who made me happy all the time, including one friend, in particular. Every Saturday, we would go to each other's houses and watch the WWE at some ridiculous time in the morning and the UFC. Last Saturday, we went to Bellator in the 3Arena and it was the best time of my life. When I was younger, I never thought I could go anywhere without my mum and dad with me. To be able to go out with a friend for over seven hours was an amazing feeling.
When I was 16, I started my first job in a kids' play centre called Ship Shape Kids Play in Blanchardstown. It was a facility for children who wanted to play. It was not easy for me because there was a lot of sound from kids screaming and running around. I honestly do not know why I ever went there and I do not know how I ever coped with it. However, I enjoyed my time there because I also made some good friends, some of whom I still talk to. That all changed when the pandemic hit. I was never called back to my job. Many others were called back but I did not receive a text during the pandemic.
A couple of months later in 2021, I went to a different place called the ODEON cinema in Charlestown. I worked there for nine months. It was the best job I ever had in my life because there were a load of autistic people there who got what I was about. It was amazing.
I went to college in 2020 and studied sports management and coaching. Like Mr. Mark Kenny, I split my course up into two years. However, I found out half-way through my second year that people were sending messages about me and my autism to one another in a group chat, calling me "autistic" behind my back. It hurt me, so I left college after that. It was really tough for me. Now, I work in McDonald's in Blanchardstown, and have been for the past eight months. I left the ODEON because it was too much of a trek for me - I had to get three buses just to get there. I was always nervous about the time, because if one bus was delayed, it could screw up my trip to work entirely. McDonald's is a great place to work.
When I turned 18 last year, I engaged with something called Gheel Autism Services. Two case workers work with me and have helped me a great deal with, for example, getting a job and becoming a social person.
I am proud of myself and I have achieved so much, but the best is still to come. I thank the committee for listening to my story.
I thank Mr. Cullivan. I see the former Cathaoirleach of the Seanad, Senator Mark Daly, in the Visitors Gallery. He was instrumental in getting the Joint Committee on Autism established. I thank the Senator for his support.
Next, I call Ms Lautwein.
Ms Regina Lautwein
I thank the committee for having me. I am 58 years of age and am autistic. I was autistic without knowing it for nearly my whole life. I was diagnosed one and a half years ago. It was like putting on glasses for the first time – it changed my life's perspective.
I was invited to attend this meeting through CARA, where Ms Fox works in Waterford. It does a great job of providing a few hours of support for people who have just got assessments. However, I would never have known it existed if my kid had not been sent there by her college disability office after she got an assessment. She would never have known she was autistic had she not met people in her age group who were also autistic; she found that she could actually get along with people, did not feel socially awkward, could fit in and felt life was normal. When we started digging into it, I found that it was no different for me.
By the way, we could find no information on official pages. We got everything through online research and social media. When we decided that an assessment might be a good idea, there was no information on how to get an assessment. We ended up doing an adult assessment – she had just turned 18, so nothing was available for her – followed by an ADHD assessment. She had just started college. I am probably ADHD as well, but I will not spend that money because I would rather save it for occupational therapy for me or my kid, since it is not available for free.
This was my life when I was diagnosed. I want to let the committee know how that felt and how we did not get any support. I would not be here today – I would not know anything about autism – if it were not for my kid struggling.
What is my life like being autistic? I was thinking about that. It is just me. It is my personality, basically. A part of my personality is that I can hyperfocus easily when I do thinks I have a special interest in. I can see the smaller parts of the picture as opposed to the bigger parts. This helps me in my job. I am lucky I found a job into which I can put all of that. I am a violin teacher, so when I have students, their problems spring out to my eyes. I see and hear them and can fit it together. It is a one-to-one fixed setting with a teacher and a student, with just one topic being discussed. I am grand with that. I am not grand when I am in a larger setting with lots of people. Fifteen minutes of social engagement with a larger group is more exhausting for me than a whole day spent teaching. This is not the case when I socialise with autistic people, though. That is no problem. It is just different ways of communicating, and one of them can be really exhausting.
My main problem has to do with my sensory issues. I have had them all my life but never knew why. I was always told that I was overly sensitive, and I just accepted that until I found out that a sensory processing disorder can be a part of autism. I have changed things since finding out. I now have some special glasses and contact lenses that protect me from light. I will put on the glasses to show the committee how I go to the supermarket in the evening. I also have special earplugs, which I will wear now. They fade out a little bit of noise. This is how I go to the supermarket now, but I will give the committee a little demonstration of what it felt like before I found out I was autistic - it was like having percussion intruments playing in my ears. It was not only noise and light – I am also extremely sensitive to perfume and deodorant. Just imagine someone standing at your side and blowing a smell into your face that you really dislike. That is what it is like for me when someone wearing strong perfume or deodorant is standing beside me. It is my normal impression of the supermarket.
As committee members can imagine, it is exhausting when you face this for the whole day. I always felt less productive than others, I was easily exhausted and I started questioning myself for not being as productive as others. This was all because I did not know. I did not have access to information. That is understandable at my age, as there was no knowledge of this subject when I was young. I would not even have suspected I was autistic. As someone else mentioned, the image of autistic people is still the weird boy and crazy professor. I used to think the same two years ago - that was my understanding of autism. To change this, there must be a general awareness among the public. That should start at school. It was mentioned that the first time someone had heard about autistic people was in fifth year. It should be normal in school to learn about the different ways brains work – I am not only referring to autism, but also to ADHD, dyslexia, dyspraxia, etc. – and how to communicate with one another.
It is sometimes thought autistic people lack communication skills, so they have to learn to communicate. No, it is both. Autistic people do not lack communication skills when communicating with other autistic people. They lack communication skills communicating with people who have a different brain set, that is, neurotypical people. Both groups have to learn what communication really means, not just expecting people to react in a certain way because that is what is done all the time. We need to really listen to each other and really tune in. This is not so difficult to do when one knows about it. People will notice from my accent that English is not my first language. For me, it is much easier than for a lot of other autistic people because when I make social slips or do not express myself the right way everyone thinks it is because I was not born here, so it is fine. In the 15 years I have been living in Ireland, I have never experienced any problems.
People want to communicate with people but they do not know how and they are slightly afraid, because they do not know about autism. Much more has to be done on raising awareness. Assessment should be accessible for adults and support should be available. That is not just my idea. In a review in 2018, the Department of Health stated there should be assessment and supports available so it is not really something new. Raising awareness is very important and it has to start in school with the teachers and other professions and go out into the wider society. If no one tells a person that they or one of their family or friends may be autistic, they will never know. People in this position cannot find out and cannot protect themselves like I am doing today. I think the committee is on the right track by starting to listen to autistic people. I hope more awareness will be promoted in the future.
I thank Ms Lautwein. We are joined by Ms Amanda McGuinness and Mr. Adam Harris from AsIAm which is doing great work in bringing autism to the attention of people and the Government. It has done a fantastic amount of work. I thank everyone in AsIAm for the good work being done on behalf of tens of thousands of children and families throughout the country. I appreciate the support the organisation has given this committee from day one. The committee members received training and AsIAm is working with Mick and Róisín and the team here in Leinster House on making our parliament an autism-friendly building. That is something we will all be proud of when it happens.
Mr. Adam Harris
I thank the Chair, members of the committee and all the teams supporting the committee for the co-operation and engagement with us since last summer. Today is really important in providing a forum to hear from autistic voices. Huge diversity is what makes our community unique and strong. Such is the diversity and strength of the autism community, the time remaining to the committee today should really just be a starting point or a continuation. There are still many more perspectives from within our community and particularly intersectional perspectives that can enrich the work of the committee in the months ahead.
As has already been referred to, we are delighted to be working with the committee on the training and accreditation piece because it is important that parliament is accessible for autistic people. A number of months ago, the committee had a meeting in joint session with the disability committee looking at the area of accessibility. It is an interesting example of where the law often says one thing but does not always honour what it says, in particular, to autistic people. Even though in recent years, we have seen improved physical access in many instances, the reality is that autism accessibility in public spaces is often not considered at all. We have heard this point made in many of the contributions today. That is a positive point.
The committee has recently examined some important themes such as health, education, employment and communication. It is clear the system is failing across the board in many respects, with dire consequences for autistic people and our families. It is also fair to say that resourcing and improved systems are part of the solution. However, there needs to be a significant change in attitudes towards autism and how we regulate the supports and training that are delivered to autistic people. We see that in particular when we talk about education. We are already seeing the conversation start again about suitable school places for September and whether we will have enough. We have to recognise that simply having places or having chairs for children to sit on is not providing an accessible education for autistic people. We need policies to protect autistic people within the education system, that value the different way autistic people think and communicate and protect autistic people from restraint, expulsion, seclusion or suspension. We have a long way to go in with regard to these issues.
It is positive that the committee has decided to extend its work. In the autism community and in the broader disability community, when opportunities like this present themselves there is always an initial excitement about what this opportunity could achieve. Then there is always the fear that this will just be another report, as often happens in Ireland, where a huge piece of work is done and brilliant policies are formulated but never get properly implemented. Having this committee, which comprises such an engaged group of Deputies and Senators, is a once-in-a-generation opportunity for autistic people. It is important that the committee is given the time needed to do its work. Many of the sorts of issues that we think are important to be looked at in the time ahead have been touched on today. They include adult diagnosis, social protection, mental health and mortality through to issues that perhaps people do not always think about at first when it comes to autism, such as the criminal justice system, housing and public transport.
We also need to look at the laws that exist in Ireland, specifically the Disability Act 2005, the Education for Persons with Special Educational Needs Act 2004 and equality legislation. We need to look at where they are and are not delivering for autistic people. There is an accountability gap in many instances when it comes to the implementation of policy and regulation. Whether we are talking about behavioural-based approaches which can greatly disadvantage and harm autistic people through to how diagnosis in the private system operates, there is a real need for greater regulation.
Coming out of this process in June, we would like to see a costed report that sets out clear measures and, critically, leads to legal change. If there is not a law underpinning the sort of reform that is needed, we will be back here in ten years having the same conversation.
It has been clear today and throughout all of the committee meetings so far that the core of the autism community is autistic-led groups and local support groups that are often doing all of the work and operating almost entirely voluntarily. One of the key outcomes of the committee's work should be appropriate support and resourcing for this activity. If what is being achieved can be achieved in the manner that it is, I cannot imagine what could be achieved if there were targeted supports to these groups and activists.
Ms Amanda McGuinness
I am an autistic self-advocate but I am also a parent to four children, three of whom are autistic. I was really moved listening to Adam and to the accounts the other witnesses, Mark, Naomhán, Darragh and Deasún, gave about growing up. I can identify with much of what was said because I have three autistic sons. I was identified later in life as an autistic person so I went through various traumas because I was a "different" child growing up. Now as an adult, I am raising four incredible human beings, three of whom are autistic. I think of circumstances where they have been treated differently, marginalised or treated poorly because they are different.
Then I think of Ger Kenny, Rosaleen Cullivan and all the other incredible parents here who are doing their utmost to raise incredible human beings who happen to be autistic. As Adam Harris said, we need to support the parents also, and the groups on the ground, such as SparkAbility, from my colleague, Ms Zarah Doyle, that are doing so much in our communities as well, to support children who are different, who are going into schools, who are being treated sometimes unfairly and who are being treated, maybe by their peers, as different. I can give a few examples from my own children. My son Conor, is non-speaking. He is now almost 13. He attends a special school in Castlebar - St. Bríd's. When he was a child - much younger - growing up, we would have had circumstances, unfortunately, in our own town, where, because he is not speaking, he would communicate through a speech device. Sometimes, for various reasons, he might decide not to use that when we are out and about in public, and he would make noises to communicate and as his parent I would know what those sounds would mean. Unfortunately, members of the public, at different times in his life, would have imitated him in a very negative way. I recall one time I had my daughter Hayley with me and I just took her by the hand. Conor was in the trolley at the time. We were so proud that day because that was Conor's first big moment that he could cope going into a big shopping centre. We were just very excited for him. I remember I rushed them back to the car and I was tucking them in and doing the seat belts and all the things. I was sitting back into the car and Hayley said, "Mum, why did we have to rush away there?" I just said, "It is just I thought it was going to rain." It was the summertime and there was no rain. She said, "Was it because those boys were making those sounds like Conor, trying to laugh at Conor? Why were they laughing at Conor?" I know Zarah Doyle beside me would agree that as a parent you are doing so much all the time to protect your children but it is so difficult all the time. It is not just when you are going our socially. I have to say in my own experience I have been very lucky with the schools my children go to but I know that it is not the experience of parents and autistic people across the communities in Ireland.
As an adult, I was identified later in life, at 39, as autistic. I have to thank Adam Harris for that, and our deputy CEO, Fiona Ferris. I finally felt the courage to go for an assessment. As Mr. Darragh Cullivan mentioned about the pandemic, I just felt so calm and relaxed at home and it was the thought of having to go back to that busy life again out in the community and being judged for being different. I often - I am probably doing it now and I apologise - speak very fast because my mind is very visual. It is what is called "hyperphantasia". I think quickly in pictures and try to translate pictures to words. For me, going out into the community and going back into that world again was going to be frightening in the sense that I finally had found my calm. At different times in my life, I was going to go forward for an assessment but each time I thought, "No, I will not." Unfortunately, I might have said to other people, "I think I am autistic" and their responses were - we think of what everyone else has mentioned here today - about judgments, attitudes, negatives and stigmatisation around being autistic. I eventually went forward. It was because of watching Adam speak so much through Zoom with which we all got familiar and, in particular, our deputy CEO, Ms Ferris. Suddenly, I felt that if these incredible authentic moving autistic individuals are so able to be themselves, why could not I do this one thing for myself and find out who I am finally. I did that, and it has changed my world. I was formerly a board member of AsIAm and I am now lucky to be a training officer within the organisation.
What I am finding with going out to schools and talking to parent groups and to autistic individuals is that stigma remains. Those negative experiences of being judged because you are different remains. I have such a fear for my own children because of what I am seeing, either on social media because I work in social media but also from talking to autistic people all the time. In particular, I was moved by Naomhán Mhaonaigh's story because I can see elements of that, in my own life but also from my son, Jack, in particular. Naomhán reminds me a little of Jack. I just thought what an incredible human being Naomhán is to have spoken with an open heart, but so bravely. I would hate to think that in another ten or 20 years that we would be back here hoping for change. I thank the Cathaoirleach, all the members of the committee and everybody here for doing the work that they are doing. Now is the right time. We are in the right space to make a real impact and we are in the right building to say that autistic rights are human rights. I thank the committee for all that it does.
Ms Zarah Doyle
I am the training manager with AsIAm but I am also here as CEO of SparkAbility, which is a grassroots autism support group. I support I want to comment on how joyful it can be to parents, autistic children and neurodivergent children and it is completely overshadowed by negativity and shame. To understand yourself is to understand your child as well. We struggle every day to knock down, climb over and sidestep barriers for our children to access their rights as children and as human beings just like Adam Harris, Amanda McGuinness and everyone here today has mentioned already.
You cannot advocate for your son, is something that I have heard before, because your son is autistic if you are not autistic. To that person, I would say that I have not had time to explore my own neurodivergent mind as a result of having to fight the barriers on a day-to-day basis and I am going through that process at the moment. It has taken me ten years to get to the stage where I can have the head space to explore those avenues of what it might mean for me as a person.
As parents, we understand and empathise on a level that no one else ever will. Unfortunately, when it comes to our lived experiences specifically, we are let down by the inconsistencies of the macro-system injustice on a daily basis. We are the parents who professionalise ourselves as nobody is coming to our aid, except, of course, for AsIAm and everyone here who is openly talking about all of the levels of stress that are out there and the barriers that we are fighting day to day.
When a parent experiences toxic stress because of failed social support systems, his or her ability to provide the support his or her child requires, or level of energy to fight that fight, may be encumbered. This can have a ripple effect and impact severely on the relationships within immediate family, extended family and the social circles within his or her community as well.
It should be noticed that a parent may also thrive in the face of adversity and challenge his or her situation creating his or her own support system. Sensory accessibility is why I set up a social enterprise for neurodivergent children creating safe space outside of the home or the home-away-from-home mentality.
We need to flip the narrative to a strength in social power that we can all get behind. Being afraid of difference is one of the biggest barriers to neurodiverse inclusive society.
I wanted to bring back in Ms Ger Kenny. I cut her off. Apologies, she had something else to say.
Ms Ger Kenny
I thank the Cathaoirleach. I would like to speak about two topics: PLAN and Little Seeds Arch Club.
PLAN is parent-led autism network. It was set up by me in 2018 following a meeting I had with Tusla. There are high numbers of children being diagnosed, particularly in Dublin 15, and with long waiting lists for services, Tusla wanted me to source professionals to give free talks to parents on all topics autism related. This initiative is funded by the agency. Another parent and I book professionals, such as professors, OTs, speech and language therapists, to give the talks. These talks are usually on a Tuesday at 7 p.m. We alternate the talks between the Crowne Plaza Hotel in Blanchardstown, Dublin 15 and on Zoom. Topics have included puberty autism in girls, anxiety, diet, transition into primary and secondary school, autism and food, etc. All talks are advertised on our Facebook page. We have more than 2,700 people on Facebook reaching out to parents, now nationwide.
Parents really enjoy the evening when we have our talks in the Crowne Plaza Hotel. A cuppa, a biscuit and a warm welcome awaits. Parents get to chat and make connections with other parents who understand what it is like to raise a child who is autistic. Parents are grateful to have the opportunity to listen to a professional speak. They can ask the professional a question after the presentation and presentation slides are emailed to attendees afterwards.
Following on from the huge success of PLAN Dublin 15, we have also replicated PLAN in Dublin 5, 13 and 17, and in Balbriggan, over the past two years. All their talks are on Zoom, usually once a month. They have also been a great success.
I hope in the near future to see a PLAN rolled out nationwide, in each county. It would not be expensive to roll out and would just need a Zoom licence and payment of the professional fee. Here is hoping.
My youngest child, Mark, who is sitting beside me, is autistic. When he was growing up, there were no clubs for him to attend in Dublin 15. I met another parent, Rosaleen, who is also attending this meeting, whose son Darragh is also autistic. We had the same vision and passion to create a fun and safe club for our boys to attend each week, giving our boys and our members the best chance of living independently or semi-independently in the future. Almost ten years ago, therefore, we set up Little Seeds Arch Club for children and teens with autism in Dublin 15. We affiliated to Arch, the national charity for children and adults with additional needs, for our charity number and insurance. We started with just seven children and we now have 89 members, from ages three to 23. We practise life skills, living skills, social skills, mental health and well-being. Six groups of children meet over four evenings each week. We employ professionals to work with our children such as occupational therapists, OTs, a yoga and well-being teacher, a music therapist and a play therapist. Activities include learning to cycle and equestrian therapy. Our OTs help with gross and fine motor skills and the professionals talk to our teens about their autism diagnosis, friendships, bullying and puberty. Community gardaí have provided stranger danger and drug awareness talks. Our members learn to cook, shop, travel on a bus, play bowling and basketball, practise yoga and so on. Last September, we launched Little Seeds autism therapy services for our members. So far, our members have availed of music therapy, play therapy, sibling workshops, fine motor skills and art and well-being classes. We do our own fundraising activities, such as parachute jumping and dinner dances, and we are able, therefore, to subsidise all the activities for our members, which eases the financial pressure for our parents. We are incredibly proud of Little Seeds Arch Club and of all our members have achieved, and we are excited for the years ahead.
One year ago, I set up a well-being autism support group, which meets once a month. This is timeout for our mams to come together and have a cuppa, a chat and chocolate cake. Over the past year, we have had hair and makeup classes, Zumba, reflexology, yoga and well-being, afternoon tea in the Carlton Hotel and a spa day in Dunboyne Castle. It is so important we look after one another. You cannot pour from an empty cup. In the past year, I have helped parents set up their own social club in their area. New clubs have started in Athlone, Tipperary, Clondalkin, Drumcondra and Dublin 15, while other areas are in the early stages of planning, such as Drogheda, Dundalk and Artane. It has been fantastic to see, given there is significant need for these clubs throughout Ireland. We believe our children should have the same opportunities and be given the same chance in life, as other children.
It was remiss of me not to congratulate Mr. Harris on his recent engagement. Like every newly engaged person, he has been turning the ring around his finger.
Ms Kenny made a point about the committee. We are committed as a group to ensuring this report will not rest on a shelf. We want it to be implemented. We have sought the authority for an all-party committee to be set up to review constantly the proposals we make, whereby the Minister of the day, whoever he or she might be, would report to the Dáil and Seanad yearly on the implementation of the various recommendations we will put forward. I give a guarantee to everybody here that, as a group, we are fully committed to ensuring we make changes. As I said earlier to a large number of parents' groups who were here, we have to thank them for all the work they do. It is very important some mechanism be put in place whereby the Government will support the groups that are doing the work, and that every part of the country has a support group for both autistic persons and parents.
I had to cut short the first meeting we had. Dr. Mathews was to come in but I knew we were running tight on time, so I will instead give her the opportunity to speak now.
Dr. Aoiveen Mathews
I thank the Chairman for the opportunity to speak here today. I am a mother of a child with autism and a GP from County Louth. My five-year-old son Darragh was diagnosed with autism in September 2021. He also has sensory processing disorder. There are two areas where I have concerns about the services and supports provided by the State, namely, the access to supports for children with autism in mainstream schools and the lack of multidisciplinary services to diagnose and treat our children. When Darragh was diagnosed, the psychologist told me her recommendation was mainstream with SNA support for Darragh when he started school. Little did I know the battle that lay ahead. Ms Ford, the principal of our primary school, explained earlier how we had a huge fight on our hands to get support for our children in the school. We were told "No" on so many occasions. What I was faced with was my autistic child in a mainstream class with no SNA or learning support, where he would suffer severely, as would the rest of the children in the class by being distracted by his unmet needs.
In our school, we were not happy with that and we continued our fight. One of the most difficult things I have ever had to do as a parent was sit alone, in front of a panel sent by the Department of Education to our school in May 2022, comprising two psychologists, a representative from the NCSE, an occupational therapist and an inspector, and explain and justify why my son Darragh needed and deserved access to an SNA. It was one of the most humiliating experiences of my life. It was just wrong. I recall saying to myself that no parent should have to fight and beg for help like that. Living with autism 24-7 and doing your best for your child is difficult enough without having to fight for help. All children with autism need and deserve support. We had to justify it case by case in our school in May 2022. I came away feeling and knowing that the State and its experts and policymakers just do not get it. If they did, we would not have to grovel for support for our children. You could have a PhD in honey, but until you taste honey, you do not know it.
The good news is the fight paid off, and in June 2022, the school was advised it would have two more SNAs and a special education teacher. Now there was going to be an SNA in the junior infants when my son, Darragh, started school in December 2022. He would also have access to a learning support teacher, mainstream with support. Darragh started mainstream school with support in August 2022. I walked him into the yard to line up with his 13 new classmates. When I looked at Darragh in that line, I asked myself why we had had to fight so hard for him to have the equal right to stand in that line with the 13 other children, when it was his human right. It is not okay; it is time for change.
Many parents panic and feel that an ASD class is the best place for their autistic child because it is the only way to get the much-needed support, but that is not the case. ASD classes have a place for a certain number of children with complex needs, but international best practice shows mainstream with support is the best option for many children with autism. Mainstream classes help the autistic child's communication and social skills to develop, two key areas with which autistic children struggle. Many parents are being misinformed about ASD classes versus mainstream with support, and many parents are anxious and panicked as a result. In his report published in March 2022, the chief inspector stated that "enrolment policies for classes for pupils/students with autism should prioritise places for those with complex needs, and that pupils/students with less complex needs be included in mainstream classes with appropriate support".
Mainstream with support is working really well for Darragh in his school and he is thriving. His social skills are really coming on. He is very lucky. He attends one of the most inclusive schools in the country, one with a winning formula, namely, a small mainstream class with a well-informed teacher who knows, understands and is well trained in autism, and with access to both an SNA and a learning support teacher.
We have the winning formula in Tullydonnell. Inclusion works but, by God, we had to fight for it. Every child in this country deserves the right to access the winning formula without having to fight for it the way we did. It is now time to make changes at a national level.
The second area regarding services and support provided by the State I have concern about is the lack of speech and language therapists, SLTs, occupational therapists, OTs, and psychologists. The years-long public waiting lists for assessment of diagnosis for a condition where early intervention is key are unacceptable. If one wants to get an early diagnosis, one must go privately. At present, it is almost impossible to even access an appointment for a private assessment as the demand is so great. The incidence of autism has grown exponentially in the past number of years. The demand for assessment and treatment is much greater than the supply of services currently available. There is not enough accountability and transparency in Ireland. I draw the committee's attention to page 20 of the Autism Good Practice Guidance for Schools, published in April 2022, which states the incidence of autism in Ireland is 1.55%. This figure is from a 2015 publication that was seven years old at the time the guidance document was published. A 2022 publication in Northern Ireland stated the incidence there was 4.7%. The incidence in our school is approximately 5%. We believe this is a more realistic nationwide figure. One in 20 children is a huge figure.
The bottom line is we do not have enough SLTs, OTs and psychologists in Ireland to diagnose and treat our children. We train health professionals in Ireland for export. As a GP since 2004, I can tell the committee first-hand how soul-destroying it is working as a health professional in Ireland today, especially in the past ten years. It is getting harder every day. Multidisciplinary health professionals across the board are faced with huge workloads from the HSE. These workloads are not only unmanageable but are, quite frankly, unsafe. There are many unfilled positions on disability teams throughout the country. This does not mean health professionals do not want to work with children with additional needs. It means they do not want to take on completely unrealistic, unmanageable and unsafe workloads. These professionals want to provide good-quality service to patients. The HSE does not provide them with the opportunity to do so. It expects someone to do the work of three people. It is not good enough. The HSE does not and has never listened to health professionals, those of us on the front line who know what is going on in the real world of health. Listen to the health professionals, meet their needs and treat these people like gold. We cannot run a health service without health professionals. It is like trying to run a restaurant without food.
Our children need health professionals. We need to create more places in colleges to train SLTs, OTs and psychologists and then make Ireland a good place to work. With realistic workloads, good-quality care can then be provided. Ms Sheridan made a good point about her experience with her GP. I can empathise with that. Prior to becoming a mother of a child with autism, my knowledge of and training in autism as a GP was very minimal. We also need to train our GPs because as the mother of a child with autism, I feel I am a much better GP for patients because I now have tasted the honey. I get it.
When children with autism are supported appropriately in education and health, they can have very good outcomes. It should be remembered that most of these children are extremely gifted. What their full potential can offer the world is phenomenal. Autistic children who are not supported, however, can have very poor outcomes. A study by Trinity College Dublin published in April last year stated that these children are six times more likely to attempt suicide and twice as likely to die by suicide. These are just some of the grim statistics. Increasingly, in the past five years especially, I see teenagers coming to me who are self-harming, and with anxiety, depression and suicidal ideation. As Ms Ford can tell the committee from her work with CAMHS in a psychotherapy role, when it is peeled back, many of these teenagers with anxiety etc. have undiagnosed autism. Early diagnosis and intervention are crucial.
This is a very serious situation. The harm done to so many generations of children in this country since the foundation of the State is continuing in 2023 through many children not being supported in their education and health. This harm is on the scale of that done by the mother and baby homes. This is no exaggeration. It has to stop now. If it does not start changing today, mark my words, this Government could have blood on its hands. Is our generation no better than generations before us? Has history taught us nothing? The bottom line is twofold: mainstream education with support, with no child being refused, and more health professionals. I do not want to talk about it any more; we need to get out there to make it happen. Ms Ford and I have the drive and would like to help to make this happen. Please heed us and let us help make the change. Children are losing out and more harm is being done by the day. It stops here and stops now. Let us get on with it.
I thank Dr. Mathews and all the speakers. I will allow members to make comments or ask specific questions.
I apologise for arriving late. I was speaking in the Dáil. Many things arise from today. The earlier session was also fantastic. I hope Mr. Foote will not mind me saying that I have known him since before I knew he was autistic because we have a shared love of bicycles. That shows the invisibility of autism, in so many cases. You cannot see it. It is not immediately obvious in the person you are speaking to. We need to increase the awareness within our society that this is one of the things we encounter. As Ms Lautwein said, it is just another mindset. When I found out Mr. Foote was autistic it did not diminish him in any way. It was just another piece of information I added; he liked bicycles and he was autistic. That was just another facet of his make-up I became aware of. I was very struck by what Mr. Cullivan said about a WhatsApp group where people talked about him being autistic. I guess they used it as an insult, which it should not be. It is just a reality. It should not be any more an insult than an ethnic background or a sexual orientation. It should just be a matter of, "This is just a fact about me. I am tall. I have a Waterford accent." It should just be another descriptor. It should not be something used as an insult.
I was struck by a point I have spoken with Mr. Harris about previously. I was a primary school teacher before I was elected. Thinking back on it now, as my awareness of autism increases, whatever about the boys I taught - I was probably attuned to what autism in boys looked like - I wonder how many girls I taught who were autistic who I did not see or notice because it maybe did not look like my picture of autism. That is a huge awareness piece we have to build on. We have to make sure that awareness is out there far more for people.
Just as I did in the previous session, I thank people for their bravery in coming forward. To come to this forum to say personal things about themselves is not an easy thing to do. It requires people to really put themselves out there. It is so important for the committee that our representatives' voices are in the report at the end so it is not just a bunch of people in Leinster House with some helicopter view. We should hear from that real lived experience from people who have arrived at diagnoses late and have suddenly had that re-understanding of how they lived their lives. That is such an important perspective. It has been highly beneficial for the committee to hear their experiences and those of the speakers we heard this morning.
It has really educated us. I think we will see that reflected in the recommendations that we make in the final report. As I did earlier, I pass on my huge and heartfelt thanks to the witnesses for having that personal bravery and courage to come here today and to tell their stories.
It is not a competition, but it takes a lot of bravery for our guests to come to this House and tell their stories. The purpose of the meeting is to listen to our guests as experts, not for them to listen to us making recommendations. I might upset a few people here and I am known to speak out of turn at times. When I was a member of a previous committee on mental health, it was suggested that we bring in experts to hear their opinions or views. The witnesses were from the Royal College of Surgeons of Ireland or the College of Psychiatrists of Ireland. No offence to them, but I said that the best experts are the people who have lived experiences.
Some of the stories we have been told today are upsetting and also very heartwarming. It is very difficult for people to come in here and tell the truth about themselves, but it is a really powerful and strong thing. There are people outside of this House watching today who would not be aware of the issues. I suppose we are perceived to know everything as elected representatives, but we do not. I have learned so much today from the two sessions. It was heartbreaking to listen to stories of people losing their best friends because they were judged for being different, of the loneliness and isolation, and of not getting the assessments. That drives all of us bonkers.
As Deputy Ó Cathasaigh said, it is about us publishing a report. We are very different as a committee. We might come from different political backgrounds, but we leave the politics at the door because this is a rights-based issue. We certainly do not want to be responsible for another bad legacy when it is a lot easier to do the right thing, even though it seems to be more difficult to do the right thing in this country because we meet a lot of resistance. That resistance has to change. As the Cathaoirleach said, we are working collectively on the report. Some of the recommendations are already being looked at by the Bills Office. I have sat on other committees, but I have never seen a committee move so fast. It supports everyone in the group. We leave our crap outside the door when we come in to this committee, because it is personal. I think we are all on the same level of thinking, in that we need to do the right thing. I hope that at least we can leave this committee and say that we got something right. Let us be realistic. We are not going to work miracles and get everything right, but if we get that stone of change rolling again, everybody, including all those present and those who were here earlier, will have played a part in it. When you play as a team, you have strength, but you also have expertise when you have honesty.
From listening to our guests I note that while all the stories are very personal and different, many of the points are the same. They can learn about each other. They are thinking that it is not just them and it is not about isolation. Many people feel very isolated. Of course, people will be judged when they tell the truth. Unfortunately, in this country it is sometimes easier to lie and hide something than to tell the truth for fear that you will be judged, called names, pointed at, put in a corner or ignored. That is where we were going, and it has to change. It is 2023; we should not be here talking about this. We should have been investing and listening during the Celtic tiger. I do not think our guests realise the importance of them sitting here today. They are not witnesses; they are contributors to the possibility of making history. That is because they believe as much as we, as a committee, believe that change can happen. We are the members of the committee and we are the legislators. If we leave politics at the door and work together on this, we should be able to get it done. We can all go back to our own parties and tell them what has been happening and what we believe, and tell them about the people who have told their stories. We can work together on this and do something on what is a human rights-based issue, as I have said.
It is about equal opportunities. People should not be tagged as different. We all have feelings. If you are cut, you will bleed. Your colour, class, creed, religion, sexual orientation or gender does not matter. We all have feelings. We can work together on this. I have no problem saying, as a committee member, that it is one of the fastest moving, most powerful, very empathetic and at times emotional committees to sit on, because we are listening to people's personal stories. None of us is perfect. We have all gone through crap in life and we all make mistakes. I am pretty good at making mistakes. As they say, you make mistakes; mistakes to do not make you. It is very simple. You learn from them. As I said, we do not want to make the mistakes of the past and get things wrong. Hopefully, we can get these reports and recommendations onto the floor of the House and drive on the recommendations and what is in the legislation. Not everything is going to come out of it, but there is more than one way to skin a cat. When you are working as a team, you can drive it. I ask our guests to bear with us but to trust us. They trusted us today, in fairness, when they told their life stories. As I said, we are here because we genuinely care. This is not a party political broadcast for anybody here. Despite what some people outside of these walls might think, there is real solid and positive work going on here. It is work that all of us want to be proud of. In five years' time we might not even be in this House, but at least we might be able to say that there are no longer waiting lists for assessments of needs and there are fully staffed teams. We tend to normalise the bad stuff in life. We should be normalising the good news in life. Schools should not be having problems. It is about supports and resources, and keeping our best educated people here. We are exporting them at the moment, unfortunately. It is a huge plan, but it is a doable plan. As I said in respect of other issues, we should have the best country in the world. We have the best people, so why should we not have the best country in the world?
A lot has been said already. I feel very privileged and humbled to have listened to people's stories today. I missed the first session because I could not make it. It has really opened my eyes a bit further about how autism impacts on everybody in a different way. There are difficulties in getting involved with the legal system. The forms are complex. Life is not made easy for people who have autism to access the human rights they are entitled to receive. I thank the Cathaoirleach for really driving this particular session. As he said, our guests are the experts. They have lived it, no matter how early or late in life they have received a diagnosis of autism. Their expertise is going to hugely benefit and impact how we try to bring in legislation to support them in the future. I confirm that as a legislator, I will do everything in my power to do that and to work with the committee, because the committee has been very effective up to now. I hope that we can drive it home, as Mr. Harris said, and that it does not stop. There is another report to publish.
Before we finish our work, we need to ensure we put in the mechanisms that will deliver down the road possibly through the different committees on education, mental health and disability as well as in public transport etc. When we finish that, those mechanisms need to be there and we need to check continually how things are being implemented. I thank all the witnesses very much.
I am going to stand up. I find it very difficult to keep sitting. I agree with much of what was said. It is very worthwhile to hear from the real experts, from autistic people, on how they find the world in which we live. We all agree about what we want to see from the report. First of all, it should deal with all the issues. Whether we are talking about services or the world we live in completely from cradle to grave, there have to be the necessary accommodations. We need to make it accommodating. We need to ensure that people are comfortable and are able to access services.
Mr. Foote spoke about legal services. All the witnesses spoke about healthcare and individual sectors. Obviously, there has been much talk about schools and we all know we do not have enough GPs, speech and language therapists and occupational therapists. We need to ensure the report details everything. Beyond that, it is about introducing those necessary changes. We all understand that the required health and education services are not there. We need to do our damnedest to ensure we get those resources. In the short term we need to be able to provide the best services we can with what we have available. We need to look at all those difficulties such as legal services, accessing GP care or whatever it is.
We all know that these are problems. I am sure this is not the first time that many of us have heard some of these issues. It might be the first time for some of the people listening in. A considerable number of people have been detailing all of these problems for a long time. As Mr. Harris said, it is not just a matter of having a report. The State has been brilliant at producing reports, pilot programmes and schemes that remain as pilots but are never expanded, and society never gets the full benefit of it.
The witnesses have said what needs to be done. The earlier session dealt with a considerable amount. There has obviously been much more input here. We can probably write down all the problems on an A4 page and the solutions on another A4 page. I imagine it will run to a bit more than two A4 pages. Once the report is produced, it is a matter of making sure that we hold whoever is in government to account for delivery. That is just delivering the service and the society that we all deserve and that the witnesses here deserve. That is what we need to do.
I thank all the witnesses for their involvement. I will repeat one of the things I said earlier. We are talking about experts. Some of the people are absolute experts. Some of the people here are involved in support groups that have probably saved and helped many people through some very difficult circumstances. Where we have those sorts of services, we need to look at multi-annual funding and we need to give them support. Where we do not have it, we need to expand something else to provide those sorts of services. I again thank the witnesses. They are absolutely brilliant and because of them we might get to the point that we need to reach.
I apologise that this afternoon I had another committee meeting which was running at the same time. I have had to come in and out. I will watch back to see the contributions that I missed. This morning and this afternoon the contributions have been really impactful.
Earlier I listened to Mark Kenny speak and it was a joy to watch. I also had a bird's eye view of his mother, Ger, sitting beside him. It was pure joy watching her face as she watched him speak. For the parents we met this morning who probably had younger children to see the speakers today would have given them and other witnesses here great hope and optimism. As Ms Ger Kenny has done with her lovely son to deliver that optimism, we need to mimic that and make that happen. That is our goal. Why can we not achieve it? If organisations across the country can hire therapists, why can the HSE not do so?
I want to speak to the person at the back who was talking about health professionals. I have friends, colleagues and champions in my community who say exactly the same thing. They want to work in CAMHS. They want to work as psychologists, speech and language therapists and occupational therapists, but the HSE makes it so hard even to get recruited never mind to work. It even makes it hard to train. Clinical psychologists get a proportion of their fees paid and get paid for their placements, but educational psychologists do not. This year a cohort of them will have access to a certain amount of support. It is not good enough. It should be equitable. We ask ourselves why we do not have enough educational psychologists then we find out that it costs €45,000 in some cases to become a qualified psychologist. Who can afford that? Earlier I made the point that this is intersectional. Probably the hardest nut to crack will be the quagmire that is the HSE. I do not underestimate the scale of that.
I wanted to be in this room to be able to stand up and advocate for people. It is not for everybody. I greatly admire people who never saw themselves as advocates coming into this House, being in these surroundings, probably being intimidated by these surroundings and having to advocate for their child, their family or themselves. All the witnesses are amazing. I recognise that and thank them for all the preparation that went into today.
My final thanks are for the committee. I am not a member of the committee. I thank the Chair whom I know personally. I know how much he has personally invested into this. I sometimes text him at 9 p.m., 10 p.m. or 11 p.m. with questions and he comes back to me. I am sure the other committees are the same. As the other politicians have said, this should be one of the most important reports that is worked on in this mandate. I think the Chair from the bottom of my heart for his contribution to that.
I am personally humbled to be here. I have nothing but admiration for everyone who came in and spoke so honestly here today. It is not easy to come into a setting like this and speak so honestly. I can give them a guarantee on behalf of the committee that their voice will be heard and will be contained in our recommendations. That is extremely important.
Deputy Buckley mentioned that the committee is a very non-political committee. Even though we are all politicians, we are non-political because we all have the one aim which is to make change. The one thing about being in politics is that there is no guarantee of how long we will be in it. As the parent of a young autistic son, I would like that whenever I finish in politics to be able to look back and say that I made a difference for his life and for many other people. It is a goal for me personally to make a difference for him so that he will have a good quality of life.
I am focused on that and will work tirelessly to make sure that happens. That goes across all the committee members and other Members of the Oireachtas who were here today but who cannot be members because of the way the system works with regard to how members are elected to a committee. There are Members who come regularly to meetings and regularly are in contact with me, namely, Senator Currie and Deputy Ó Murchú. They are invested in this and want to see changes made as well.
The whole issue of services is a massive concern for everybody, as is the lack of therapists. I said this in the earlier session. I am member of a Government party but I call it as I see it. As I said earlier, we need to review the Disability Act. We need to enshrine in legislation the right for services, intervention and therapies for everyone. It is a given that we have to do that. We have to make that change. I have no problem saying that publicly and I am a member of a Government party. The Government needs to do that and start the review process straight away. That has to be done.
We have to support the groups. There are numerous support groups that are doing fantastic work for adults and kids that were here both this afternoon and this morning. We need to support them financially. We cannot have people bag-packing, constantly fundraising and spending time trying to fundraise to provide help to young kids and families. We have to put a mechanism in place to make sure that financial support is there. We do not intend this report to sit on a shelf. We want to put a mechanism in place with the Minister of the day, from whichever political party or whomsoever he or she may be, whereby the Minister must regularly report on this. We are looking for a mechanism for an all-party group that will oversee this into the future, into the next Dáil term as well, and that it will be put permanently in place. We have spoken with representatives from Scottish Autism at the recent conference hosted by AsIAm. We are organising for the all-party group, with Scottish Autism representatives, to meet the Minister and look at where they are correcting mistakes that it made in its strategy. We are at a point now where we are devising our strategy. We need to look at where mistakes have been made, make sure we do not make the same ones and start on a positive footing. That is something we will be doing in the next number of weeks.
I thank committee members for the time they put into the committee. We probably have been one of the busiest committees in Leinster House. We were meant to meet on a biweekly basis but we met nearly on a weekly basis, both in public and private sessions, to try to get the work done that we felt we needed to do. I thank members for their time.
I thank the committee staff, including the clerk to the committee, Leo Bollins, Margaret O Donnell and Éanna Gordon. Ellen Dignam Healy was replaced today with John Foyle, another member of the secretariat, who has been out ill the past number of weeks. They are putting in much work behind the scenes, not just for today, but for the committee. I want to put my thanks to them on the record.
I regret not having given an apology on behalf of the Leader of the House, Senator Chambers. She gave her apologies and I forgot to say that at the beginning, so I will just put it on the record now.
I thank everyone for their honesty. On behalf of the members, I give our guests the commitment that we will work to make sure that their concerns are heard in our recommendations. We will put in place a mechanism to make sure this will not sit on a shelf.