Micheál Carrigy (Fine Gael)
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As it is our first public meeting of 2023, I take this opportunity to wish everyone a happy new year. No apologies have been received. Before we start, I will read some formal notices and the Covid-19 code of conduct. All of those present in the committee room are asked to exercise personal responsibility to protect themselves and others from the risk of contracting Covid-19.

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

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

For the information of members, the Dáil Business Committee has agreed to our request for a Dáil debate on the committee's report which we published before Christmas. The debate is set for Thursday, 2 February 2023, and while we do not yet have a time, it is due to take place in the afternoon.

With regard to today's meeting, I propose that the usual arrangements will apply: the witnesses will make statements for five minutes each; we will then have questions and answers with members, for which each member has five minutes; and members may speak more than once, if time allows. Is that agreed? Agreed. At the request of the Working Group of Committee Cathaoirligh, we will endeavour to finish the meeting by 2 p.m at the latest. Members will be called in accordance with the speaking slots agreed for this week, which were circulated with the meeting notes.

The first item on our agenda is the minutes of our previous meetings. The question is that we approve the minutes of the public meetings held on 8 December, 13 December and 15 December of 2022. Is that agreed? Agreed.

We resume our consideration of autism policy. I welcome our witnesses to the meeting. From Inclusion Ireland, we are joined by Ms Derval McDonagh, CEO; Ms Angela Locke Reilly, advocacy project worker; and Ms Sarah Jane Lavin, director and self-advocate. Inclusion Ireland is a national voluntary organisation which works to promote the rights of people with intellectual disabilities and to ensure their participation in society. For many years, Inclusion Ireland has been involved in important work in advocating for the rights of autistic people and people with intellectual disabilities to access the services they need to fully participate in society. We look forward to hearing its views on how the State can better promote inclusivity in education and in other parts of our society.

We are also joined by Dr. Áine Roddy, assistant lecturer in health informatics and e-health at Atlantic Technological University, Sligo. Dr. Roddy looks at the economic aspects of childhood autism and the financial implications for families where public services are not available to them. The committee has heard a great deal from parents and advocacy groups about the financial strain that many families experience. We are interested in hearing more from Dr. Roddy on her views on this issue and how the State can better support these families.

Before we hear from our witnesses, I propose that we publish their opening statements on the committee's website. Is that agreed? Agreed.

I call Ms Derval McDonagh to make her opening statement on behalf of Inclusion Ireland.

Ms Derval McDonagh:

Good morning. I am the chief executive officer of Inclusion Ireland. I sincerely thank the committee for inviting Inclusion Ireland to the session today. I am joined by my two colleagues: Ms Sarah Jane Lavin is a member of our board of directors; and Ms Angela Locke Riley is an advocacy project worker at Inclusion Ireland. They both bring their experience in different ways to the committee today and I will ask them to introduce themselves shortly.

I will give a brief outline of the work of Inclusion Ireland.

We are a national civil society organisation focused on the rights of people with intellectual disabilities. Our sole purpose is to work towards the full inclusion of people with intellectual disabilities by supporting them to have their voices heard, and to advocate for rights under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. At Inclusion Ireland we work to fulfil that role in a number of ways. We provide an information service, and are particularly focused on providing information in accessible ways for people with intellectual disabilities, and for their families. We campaign for policy and legislative changes. We work in solidarity with disabled people and their representative organisations in holding the Government and State agencies to account for their progress under UNCRPD. We research issues affecting people with intellectual disabilities and their families, and publish reports based on people's lived experience. We also work for changes in how services are provided, pushing for a move away from a charity model and towards a rights-based model of support. Inclusion is a word, which is overused and under-delivered on. It is fundamentally about community, belonging and upholding human rights. It is about valuing people for who they are, and systematically dismantling the barriers people face in having a good life. It is not about fixing people, it is about fixing systems.

There are many autistic children and adults in Ireland who also identify as having an intellectual disability. We want to make sure the committee considers the intersectional issues people face. We know that sometimes autistic people who have an intellectual disability are overlooked, devalued and often not seen or heard. This is particularly true of people who are non-speaking, and who face multiple barriers in accessing their rights and having a good life. We know this needs to change. We could talk today about every article from Article 5 to Article 30 of the UNCRPD, but we would need a 24 hour committee meeting - an hour for every relevant article. What we will say is that we believe this committee and any committee where work is focused on disabled people should consider the UNCRPD as the prism through which it views its task. With all the issues facing people today it is challenging to wade through what is important, but the UNCRPD lays out a framework and helps all of us to think strategically about the kind of future we want as a society - one where every citizen enjoys equal rights, a seat at the table and a good life.

For our opening statement we will focus on two particular articles of the convention. Those are Article 24 on education and Article 19 on living independently and being included in the community. We are happy to discuss any other article of the convention and policy solutions that may pave the way for a more equal society. Starting with Article 24, the right to an education is spelled out clearly in the UNCRPD. Sadly, we know that a fully inclusive model of education is a distant dream for many autistic children who have intellectual disabilities. At Inclusion Ireland, working towards a vision where all children get to go to school together is a core pillar of our work. In November we hosted a conference bringing together disabled people, disabled persons organisations, families, teachers, special needs assistants, the Ombudsman for Children, the Irish Human Rights and Equality Commission, policy makers, Department officials, advocates and politicians. It is our strongly held belief at Inclusion Ireland that by working collectively we can bring real change. What is clear from consulting with people experiencing and working within the system is that many children must currently travel long distances to access their right to education. They only have segregated options available as the supports are not there in the mainstream. They do not get the services and supports they need to access their rights, such as access to therapeutic interventions. Families have to fight for a school place and often end up choosing an option because they do not trust that their child will get support in the local school. There is a lack of guidance on seclusion and restraint, which is happening in school environments across the country. There is a lack of guidance in special schools for children leaving school, and sometimes that leads to a lack of ambition and vision for some children leaving school, with only 17% of people with intellectual disabilities in paid employment at this moment. This year the Education for Persons with Special Educational Needs, EPSEN, Act is under review. This is an opportunity to reflect at societal and Government level on the kind of education system we want for children. For too long the charity model mentality has permeated the education system. It is not a charitable act to give a child a place in school. It is their constitutional right.

We need to flip the narrative regarding disabled children being seen as problems to be fixed and start thinking about school communities as simply better when the entire community is included. We hear many stories about the transformative effect of inclusive classrooms and school environments where inclusion works. All children benefit from that and not just disabled children. Inclusion, however, does not mean fitting a child into the system as it currently stands. It is about reimagining what schools could and should look like. We want to see vision from our political system. In 20 years, when we stand again before the UN Convention on the Rights of the Child, CRC, committee, as we are doing today in Geneva, we should feel proud of the gains we have made. Although it may seem like an insignificant request, we call on the Government to change the name of the EPSEN Act to the inclusive education Act. This would spell out publicly and clearly that we are taking our obligations around developing an inclusive education system seriously.

There is nothing special about access to education. It is a right that all children should enjoy equally, no matter the level of support they need or the barriers that need to be overcome. We are calling for a fully costed, multi-annual plan that has cross-Government support. This plan should spell out incrementally the pathway towards a fully inclusive model of education. We need to invest in our school communities. The issues disabled adults experience often stem from an underinvestment in their futures as children. We want investment in mainstream schools. They should be given the resources they need to support every child in their community and build trust among families that their child will get the support they need in their local school. This will prevent the need and the push for more separate education for disabled children. This support needs to include access to alternative and augmented communication systems, and adequate physical space incorporating principles of universal design for learning.

We want more investment in teacher and special needs assistant, SNA, training. This training should focus on neuro-affirmative child's rights-based approaches. In November 2022, we consulted with teachers and SNAs about the barriers to inclusion. One of the top issues highlighted was training both at primary degree and continuous professional development level, and within school everyday learning. Many school staff and leaders reported the lack of time for reflective practice and sharing expertise. We want to see more gathering of better data to plan properly for disabled children; this is sorely lacking right now. We need statutory guidelines on elimination of seclusion and restraint and a clear plan for investing in our children's disability network teams, CDNTs.

In our 2022 report on progressing disability services, PDS, we repeatedly call for a comprehensive workforce planning strategy. With one third of the CDNTs currently having vacancies, the resources are simply not there to support children the way they need to be supported. This is immensely frustrating and heartbreaking for children and their families. In his report on school places in 2022, the Ombudsman for Children stated: "All decisions made and actions taken from this time forth should be about building a strong, inclusive education system, which is fully supportive of all children equally." We echo that call.

The second article we would like to focus on is Article 19: living independently and being included in the community. We all know that Ireland faces a housing crisis right now and disabled people have faced a housing crisis for decades. This is apparent in the following statistics and facts. Some 2,400 people are still living in large group homes of ten or more people. Many of these individuals are autistic and have intellectual disabilities. Imagine not having choice and control about where you live or who you live with. This is the reality for some of our citizens today. We have closed many institutions over the past number of decades and yet institutional living still remains a reality for some disabled people.

Thousands of people living at home with family members and ageing carers for decades longer than they should have to. The National Federation of Voluntary Service Providers reported in August 2022 that there are now more than 1,500 people with intellectual disabilities living with primary carers who are over 70 years of age, and 485 family carers are over 80. The disability capacity review spelt out the real unmet need of people with intellectual disabilities, including autistic people. We are awaiting the publication of the implementation plan. Without this, we lurch from crisis to crisis. What is needed is a fully costed plan with multi-annual funding so that people can vindicate their rights to live in accessible, affordable, appropriate homes, with their own front door key.

Institutional thinking and living has no place in 21st century Ireland. It is, quite simply, discrimination that if people happen to have high support needs, for example, intensive support to live in their own homes, the likelihood of them getting your own front door key is incredibly low.

People should not have to stay living with their families if their expressed wish, whether that is verbally or non-verbally, is to move out. If families and people choose to stay living together, they should then have access to real and meaningful supports so that families can be families and carers can be carers.

There was not time in the opening statement to also mention other significant issues facing disabled people, such as the cost-of-living crisis, access to justice, employment, access to mental health services, etc. However, we are happy to discuss many or all of these with the committee today.

On a final note, what is needed more than anything is solidarity and understanding. We want to hear less about “them” and more about “us” as a society. We want to hear less about independence and more about the recognition that we are all interdependent. We rely on each other as a community for support, to belong and to be included. We want to hear less about awareness and more about acceptance and celebration of difference. This is not to deny the support that people need, but to respect that there is real value in our differences. One third of our board at Inclusion Ireland have a lived experience of intellectual disability. Having this healthy dynamic makes sure that we stay focused as an organisation on what is important, and that is people’s lives. Let us be visionary and invest in an inclusive Ireland.

I will now ask Ms Lavin to introduce herself and highlight some of the key issues that she experiences.

Ms Sarah Jane Lavin:

I am 54 years old and currently living with my mum in Clane, County Kildare. My school experience was not great. There was no support or guidance during my school years, which made school difficult for me. After school, I went to work with my mum. It was a catering job. I enjoyed that job and the people and environment in it. My dream job would be to be a paid advocate.

At the moment, I am living at home with my mum. I would love a place of my own. At the moment, the housing list is very long. The forms were very complicated to fill out. I think the age for applying for a house should be lower than 55.

I think public transport timetables should be easier to read; they are very hard to follow. The signs on the bus should be easier to read and clearer. The buses are not reliable and are rarely on time.

Getting to know autism and trying to get people to understand more about autism is important. Make the world more autism-friendly. It makes me feel as if there is a barrier between me and the world. People need to be more open-minded when it comes to autism. It is good to be different.

I thank everyone for listening. I will now ask Ms Locke-Reilly to introduce herself.

Ms Angela Locke-Reilly:

I am parent to Jacob, who is autistic and has Down's syndrome and high support needs. I also have run a large support group for parents of children with additional needs for many years, so I am familiar with a wide range of topics relating to autistic and neurodivergent children, and supporting them as a parent.

Dr. ?ine Roddy:

I am a lecturer in Atlantic Technological University, Sligo, which is the first technological university in Ireland to be declared autism-friendly. I thank the Chairperson and committee members for inviting me to speak today and the opportunity to make this submission under the remit of autism policy, which I will address from an autism dividend perspective of reaping the rewards of better investment.

Today’s presentation focuses on how autism policies can embrace an autistic person’s identity and their lived experiences to foster greater independence and daily living skills. It is not my intent to describe autism as a tragic narrative but rather highlight the urgent need for considerable investment in appropriate services, supports, awareness and research to empower autistic people to live dignified lives and reach their true potential. One in 65 autistic people in Ireland and their 234,000 immediate family members face significant daily challenges across the life span due to varying and complex needs, and social and financial isolation.

I will now focus on the theme of spend in order to save. The cost of exclusion and lost potential for autistic people and society is enormous.

Autism is recognised as the most expensive condition internationally due to the substantial economic impact on state expenditure for adult assisted care provisions, institutional care costs and high unemployment rates of 80% among autistic adults. Research conducted by the London School of Economics and Political Science, LSE, shows the economic impact of autism on the UK economy is £32 billion per year which is more than the combined cost of cancer, heart disease and strokes.

This raises many questions about the optimal timing of allocating scarce resources and the long-term economic consequences for autistic people, their families and society of not investing in early interventions to improve long-term outcomes, unmet needs across the lifespan and employment support programmes. There is limited published evidence on the cost effectiveness of different interventions and supports for autistic children and adolescents. However, I am involved in publications that are in progress on this.

The next aspect I will focus on are the findings from a national Irish study on the economic costs and unmet needs of autistic children which I conducted as part of my PhD research. I will first read out a quote from a parent and then give different findings and statistics from it:

I constantly worry about what will happen to him when I die. Who on this planet loves him enough to keep being his champion, to fight for all his needs and to dig deeper every day for energy? This is our lives, our journey - hard for sure but deeply human. I love him. I love our life. It's corny but true. Every day there is something wonderful to see in him. I wish services were better so I could keep my energy for being the best mother I can. I sometimes choose not to push for a service because I know how much energy it takes and I'd rather choose to give energy to my family.

Those sentiments reflect many accounts and stories from families really struggling with the lack of support and services in their lives.

I will now outline some of the different figures from the study. The annual cost per child for families amounts over €28,000 as a result of paying for private autism services, lost income and informal care. While over €14,000 of State-funded services were consumed, it is important to note in the papers I supplied that most of that expenditure related to education and special needs assistants. It was not exceptional services by any means. They were very basic State services.

Families whose children are severely affected and those with more than one child affected face significantly higher costs. Some 15% of autistic children in the survey were from one-parent families who face particular challenges in meeting needs. The findings from parental report responses show that over 74% of children and adolescents did not receive one or more service in the previous 12 months.

Some 33% of families incurred debt in the previous 12 months, specifically due to their child's condition, resulting in an average autism-related family debt of over €3,260. Families with two or more autistic children were significantly more likely to experience unmet service needs while families with two or more autistic children were also significantly more likely to incur debt in the previous 12 months, specifically due to their children's condition. The papers I have circulated contain many more figures on the unmet needs and the lack of service provision. There are major difficulties in trying to access services. Even if they had the money for them, the services were not available for them.

On autism policy recommendations, I have three key approaches. There is much more I could write, but I have condensed it down for today's speech. The first one is about implementing a person-centred approach. To respect the diversity of needs and preferences that exist among autistic people, including their preferred language, autism policies and practices need to embrace and respect the identity of autistic people and their experiences, and foster greater independence and daily living skills. We should not use the deficit-based medical model approach to autism which overlooks the strengths and uniqueness autistic people have to offer, including being noted for their sincerity, reliability, creativity, attention to detail and passions.

We need to reduce traumatic experiences through social prescribing programmes for self-advocacy and safety, and implement mandatory training for all health, education and emergency staff. We need a co-ordinated plan to address the needs of autistic people across all sectors of society, health, social care, education, employment, criminal justice system, housing and social welfare.

We need personalised care pathways to address co-occurring conditions such as epilepsy, intellectual disabilities, mental health conditions, anxiety, gastrointestinal issues and sleep problems. We need to address mental health priorities and suicidal ideation from multiple perspectives. Autistic-friendly, accessible mental health services and supports and advocacy campaigns are needed to reduce stigma, mistreatment and discrimination against autistic people. Autism acceptance campaigns are needed to reduce the pressure to camouflage autistic traits and conform to neurotypical norms and environments that may not be autism-friendly and may pose considerable threats to mental health and lead to susceptibility to burnout.

Our second autism policy suggestion relates to the need for strategic investment in autism services and supports. Sufficient funding must be allocated to implement and appropriately resource the national autism innovation strategy. This is needed if we are to address the needs of autistic people across their lifespan. The UK invested almost £75 million in 2021, which was the first year of its new strategy. Timely access to diagnosis must be followed up by making concise evidence-based information and resources available. Innovative pilot programmes must be developed, based on the priorities of autistic people and their families. Those priorities should be evaluated, in terms of effectiveness and value for money, to identify the best delivery approach in school, clinical and employment settings, digitally or in home-based settings. We must explore the enablers and barriers in an Irish context to implement the parent-mediated social communication programmes that are becoming more popular in other countries. Such programmes offer more affordable low-intensity resource use interventions and show long-term improvements. Two programmes that are supported by autistic adults are the pre-school autism communication therapy, PACT, study and the JASPER study. Significant investment in autism research is needed to address the lack of evidence on what are effective services and supports which provide value for money for State expenditure. If autistic people and their families express a preference to be assigned a key worker, we need to know what the most effective and efficient way to deliver this service is. What resources and structures would the key workers need? How much would it cost? What are the potential benefits and savings associated with investing in such support? We must recognise the invaluable role of informal carers and provide various State supports to reduce burnout and financial difficulty.

The third recommendation is around accountability and transparency. The national autism innovation strategy must be underpinned by accountability, transparency and a commitment by all Departments and stakeholders to work together, rather than in silos. Regular progress updates are needed on indicators of well-being and inclusion, waiting times, needs assessments, quality of services and supports, and financial difficulties experienced by autistic people and their families. Public attitudes must be monitored. Appropriate authority must be assigned to deal with any bureaucratic and lack of compliance issues. In conclusion, society can only benefit socially and economically by valuing autistic individuals and their families and allowing them the opportunity to reach their true potential and participate in society.

Micheál Carrigy (Fine Gael)
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I thank Dr. Roddy and Ms. McDonagh for two very comprehensive statements. I am sure they will stimulate a significant number of questions from committee members.

Catherine Ardagh (Fianna Fail)
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I thank all of our contributors and guests. It is obvious they are all very passionate about autism. I do not know their backgrounds but many of us have a family or close link with someone with autism. That is what drives many of us on this committee. I know many people who work with organisations involved with neurodiversity and autism that have similar links. One can tell that the witnesses have a passion and vision for people with autism and, ultimately, an ambition for such people. The first speaker mentioned special schools which is an issue I have come across. We opened a special school recently in Crumlin called Our Lady of Hope. It is a beautiful school and is working out very well although it started with a few issues. It is a school for children with autism and is not a mainstream school. If children can fit in mainstream settings, ideally that would be the preference but some children need an environment with extra care. An issue that arose last year related to handling children. Many teachers and special needs assistants, SNAs, were not equipped to handle children properly. Children were going home with bruises and hand marks on them.

It seems like a basic thing in an autism spectrum disorder, ASD, classroom that the teachers, SNAs and anyone else working in that environment would have the correct training. This is a niche topic, but I was blown away to hear it is happening in this day and age, and that people are not able to properly handle children. Our guests might be able to answer on that point.

It is great to hear that adults with autism are now advocates. That includes our guests and Mr. Adam Harris, who is now a sort of celebrity. It is great to hear the adult voice, no more than it is also great to see women elected. It shows there is a pathway. If one cannot see it happen, one feels it cannot happen. I say "Well done" in that regard and again thank our guests for coming to the meeting. I will listen to my colleagues' questions.

Ms Derval McDonagh:

I thank the Senator for her comments. I wholeheartedly agree with her about the voice of autistic people, and representation and its importance, particularly at this committee and in other forums. The Senator made a point about children and support within the school environment. The term "handling children" is used and we should think about what that actually means. We should consider how to support children who might be distressed or in need, or who might have a barrier to overcome. The term "handling" has no place in 21st century Ireland. We are talking about children.

Inclusion Ireland has been involved over a number of years on a topic related to the points the Senator made, that is, seclusion and restraint within school environments. In 2018, we brought together a group of family members who had contacted us individually looking for support because their children were being secluded within the school or were being restrained, mechanically, chemically or physically, because they were distressed. We pulled together a report called Shining a Light on Seclusion and Restraint in Schools in Ireland. That report went to the Department of Education and we called for statutory guidance for schools around this important human rights issue. Unfortunately, no guidance, statutory or otherwise, has been published. We know that most schools support children in ways that are child-centred and focused on the child's rights but we have no way of knowing how widespread the issue of seclusion and restraint is within schools because we do not gather data and there is no need for mandatory reporting in that regard. The Senator highlighted issues around support and children returning home clearly distressed. We have no way of tracking how widespread that is or if it happening across the board.

We ran an inclusive education conference in November, in advance of which we consulted teachers and SNAs to hear their voices about what was happening in school communities. One of the top issues that came out related to training. Teachers and SNAs highlighted their own needs for training and support, including training at undergraduate and postgraduate levels. Even more valuable is on-site training within schools, where teachers and SNAs get the kind of support and supervision they need to allow them to support children in ways that are rights-compliant. Teachers and SNAs themselves are calling for that training. We need to seriously consider as part of any strategy or policy how training is provided, how rights-based that training is and how we are ultimately supporting children to access their right to education is ways that are appropriate and suitable.

Catherine Ardagh (Fianna Fail)
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It is important to commend the family who brought a case to the Workplace Relations Commission on behalf of their child who was secluded in a corridor. I highlight that issue. The actions taken by that family made other parents a little braver to speak out. As Ms McDonagh touched on earlier, parents are so grateful that their child has a place that they do not want to rock the boat. They are grateful for the "charity", which was the word she used earlier. However, as she said, it should not be considered charity. That should not be the mentality. Those children have a right to be in a classroom in front of a teacher. That is where we have to go on this.

I say "Well done" and thank them again for all their work.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I wish a good morning to all our guests and thank them for coming here.

I commend the work Inclusion Ireland does on inclusion and on advocating for people with intellectual disabilities.

Ms McDonagh concentrated a lot on education. It is so important because if a child has a proper, appropriate and inclusive education, it will mean so much to him or her as he or she progresses through life. That is not happening because we still hear of children, as she said, travelling long distances to get an appropriate school placement, but also of the short school days. Expulsions are still happening. It is an absolute disgrace. I have come across children being expelled from a special school setting. If that setting cannot accommodate their needs, where are they supposed to go? The resources need to be put into our schools to ensure they are inclusive and they are meeting the needs of all our children, especially autistic children.

Ms McDonagh commented that there is often an assumption that somebody who is non-verbal lacks intelligence. We have heard that before at this committee. That is so untrue and so outrageous because autistic people are known to be so intelligent and to have so much to offer. There is this difficulty. Is it a lack of awareness or a lack of acceptance? As Ms McDonagh said, that is important and one could talk about all of the rights. We have to start with education and our young children.

Given that CDNTs are not properly resourced and children are missing out on so much, I am concerned for the cohort of children that needs those services now. The workforce planning required to put in place a properly-resourced CDNT will take a number of years. However, that has to be done. Has Ms McDonagh any suggestions for what could be done to accommodate the children who need the services now because we hear from parents that they are regressing in some cases because they are not getting the necessary speech and language therapy, occupational therapy or whatever?

The witnesses also mentioned the many people who are living with aged parents or aged carers. I talk to parents all the time and they worry constantly about what will happen to their son or daughter when they die. The HSE will put them in emergency accommodation. Sometimes they are 40, 50 or 60 years of age and have been living at home with parents and now they are trying to deal with the grief of a death of a parent and primary carer and having to get used to new accommodation, which, again, is seriously lacking. We need accessible housing, we need supported housing for those who need extra support but we also need to many other resources, including accessible transport, access to education and access to employment to make that independent and properly work for people.

Dr. Roddy has done research. We are seriously lacking in proper data on autism and disability in general. I, therefore, welcome the research she has done. I will ask her about one figure there. She says it costs approximately €28,000 per family. The Indecon cost-of-disability report produced more than a year ago indicates that a family with a disabled member usually has an additional cost to the family of anything from €8,000 to €12,000. That is the average and it is more for some. I am concerned about that figure. It is extremely high. I wonder if Dr. Roddy is saying that is the annual cost. Perhaps she could elaborate on that cost and where that sits with the figure that came out of the Indecon report, which, again, is a lot of extra cost on a family with a disabled member.

Were any of the witnesses involved in the work on the national autism innovation strategy? Have they been asked to be involved or are they involved, and how that is progressing?

Sometimes the case has been made to look to other countries to see what is best practice, but are we a country that could aspire to best practice? What would it take to do that? Why should we have to be a follower? Could we be a leader if the proper resources were put into the supports that are needed? I thank our guests.

Micheál Carrigy (Fine Gael)
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I might call Ms McDonagh first, and then Dr. Áine Roddy, to reply.

Ms Derval McDonagh:

I thank the Deputy.

I agree with her that inclusive education is the cornerstone and the foundation of an inclusive society. If we start with children, resourcing and investing in inclusive education, that will reap benefits beyond what we can only dream of. Ms Lavin spoke beautifully about her experience in school and the lack of guidance she experienced, and how that led to a lack of employment opportunities, ambition and vision. I believe that we need to invest in education and in an inclusive education model. That takes vision and courage. Sometimes inclusive education can be seen as this polarised space where it is about children fitting into boxes and where there are special schools and special classes as well as mainstream. It is as though we are all vying with each other. When you bring people together into a room and have the courage to have a conversation about that, we are looking for the same issue, which is the highest quality inclusive education for children. We know we are a long way off it. Ms Lavin rightly pointed out the many issues currently facing disabled children. We have contact from family members on a daily basis. It would break your heart to listen to some of the stories. A dad contacted us recently who had applied to 30 schools for his son. We can all expect to apply for two or three schools and maybe one of those will come to pass. You might not get your first choice but you will get something locally. This is 30 schools. Many families tell us of their experience of only getting their school place at the very last minute. That comes down to data, planning and better investment over time. We need to see that from the National Council for Special Education, NCSE, and others.

With regard to investing in inclusive education what we found with our inclusive education conference was that one of the words that stood out was "trust". There was agreement in the room that in an ideal world everyone would love their child to go to my local school with their brothers and sisters. That should be the normal thing that happens in 2023. However, those families told us that they could not trust that their children would get the individual support and help they would need in the local school. They are pushed into making decisions that involve the child going to a different school that is located an hour and a half or two hours down the road. We must invest and build trust with families and individuals about getting the required support. We in Inclusion Ireland have called for a multi-annual vision on inclusive education and building towards that step by step. We know it is going to take time. We are not oblivious to that. It is going to take time and investment to get there. However as the ombudsman said, every decision we make should be working towards that, decreasing that polarity, coming together and saying “What do we as a society want in terms of inclusive education? What are we trying to build for people?” I agree wholeheartedly about that foundation work around inclusive education.

The Deputy also mentioned CDNTs and resources. That is a chronic issue facing people at the moment. Inclusion Ireland has had conversations before about this. It is not the model of progressing disability services, PDS, that is at issue. Nobody can argue with fair and transparent access for children to services and supports. The unfortunate issue is that the model was not invested in before it was rolled out. There were waiting lists before it and those waiting lists have been compounded. Now we are seeing a third of those teams vacant. How can they possibly hope to support children in the way they need to be supported? If the model was resourced properly and if we build towards that then children should get support in an integrated way whatever environment they happen to be in, whether that is school or at home. The model should allow for that. Unfortunately, because it has not been invested in and because the resources are not there, it is difficult for anybody to get the support they need. That is a real shame.

I do not know whether there is a quick-fix solution for that. It will take slow and steady working towards better and taking our obligations seriously to resource those teams. For our report in February last year we had more than 1,000 families respond to a survey. They told us about their experience of PDS. At least 50% were not getting any service and 85% were waiting for longer than a year and a half to get any contact. Some of these are children with the most complex needs. There is not a therapist in the country who goes to the trouble of training and doing four years in college, who wants to work just within that kind of environment, working with waiting lists and saying "No" to people.

The therapists within the system genuinely want to be there to support people, but they do not have the resources right now to do that. That is a significant issue. We had a number of recommendations in our report. The top recommendation was about workforce planning strategy. We really need to see an integrated workforce planning strategy if we are to see any hope of improvement over the coming years.

To respond to Deputy Tully's final question about the autism strategy, no, we are not on that group. We were not invited to be part of it.

Dr. ?ine Roddy:

I will address Deputy Tully's three points.

First, she mentioned the Indecon report and the different literature about the cost of disability. I am a trained health economist. I did a national survey based on 195 families in Ireland who had 222 autistic children. They completed a comprehensive survey about the economic cost for the families. In the papers I supplied there is a detailed breakdown of out-of-pocket expenditure for the families. That was over €9,449.60. There is a full breakdown of the different types of out-of-pocket expenditure of families. They vary from special living, diet and clothing costs and care and assistance the parents need for their autistic children, to a certain amount of respite care, which does not account for an awful lot of money. Parents do not have the money to pay for respite care. They are paying for different medical costs, interventions and speech and language therapy. Different private interventions are a huge aspect of that. Then there are travel costs and trying to do skills training programmes. That is part of the €28,000. The remainder of the €28,000 relates to lost income from parents having to take time off employment. For example, a child may need to take time out of school or have appointments, so there is a certain aspect of that. The rest of it is the informal care costs.

The figure of €28,000 is exceptionally high. It is the highest internationally in terms of out-of-pocket expenditure and overall in terms of the cost for families. I add with caution that one of the problems is that there is so little evidence or research on this that there have not been very detailed studies done in other countries to this level to calculate the cost. There are, therefore, methodological issues there in that if this were done in other countries and with the exact same survey, it would be interesting to see the findings. I imagine they would be lower, based on the existing evidence in this regard. It is an exceptionally high cost. It is a cost that has been studied, and there are the published papers with all the figures to back that up.

I applied to be involved in the national autism innovation strategy and was not invited to be involved in it. I am the only health economist in Ireland specialised in the economics of autism and I am recognised internationally for my research. I work with the LSE. There are only about three health economists in the world specialised in this area.

As for best practice and how we could be leaders, one of the key issues is about consensus. When I first mentioned the three policy approaches I spoke about a person-centred approach. Often, the more you go into autism research and being involved with autistic people and their lived experiences, the more you realise they all have very different preferences about the types of services and supports they would like. That is extremely important because there can be some interventions that autistic people actually find more traumatic than helpful. It is extremely important to point that out.

I mentioned two studies that are supported by the autistic community, the PACT study and the JASPER study, which are used in other countries. The latter is a parent-mediated speech and language therapy programme which has been shown to be beneficial to autistic children in the UK. It was designed there. It is being used in other countries. I suggest it in the context of looking at the enablers and barriers in an Irish context because I am very mindful of the strain and pressure parents are under. If one suggests to some parents a parent-mediated intervention programme, they might feel that it is too stressful to have the time to be involved in implementing it. It is something worth looking at with caution as to how the autistic community and families in Ireland would feel about it. Certainly, in the UK the national autism organisation, Autistica, which has people with lived experience of autism, supports it. The findings show benefits in the long term for autistic children. It is a low-resource intervention, and the literature and practice internationally for autism are moving more towards naturalistic types of supports and interventions rather than intensive supports with therapists. Again, different people have different perspectives on that, but that is the direction internationally, where the research shows there is the strongest evidence of improvement in outcomes and supports.

There is great potential for us to be leaders in this area and to invest in it, but the issue of consensus is massive in Ireland. There is huge variation among health professionals in the autistic community on the direction they would like to take us. It goes back to the national autism innovation strategy. The more stakeholders that are involved, and consensus in terms of investing in services and supports that are respectful to the autistic community, the better. I cannot emphasise that enough, but it is not always implemented in certain situations. If we do not have that as a base, it is very problematic later. If autistic people are availing of services and supports, they can find that more traumatic. That is something that is crucial and must be looked at further in terms of developing best practice and consensus.

Micheál Carrigy (Fine Gael)
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I thank Dr. Roddy very much.

Mark Wall (Labour)
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I welcome all the witnesses today: Ms Derval McDonagh, Ms Sarah Jane Lavin, Ms Angela Locke-Reilly, and Dr. Áine Roddy. Ms Lavin, a fellow Kildare person, is particularly welcome from the great county of Kildare.

I totally agree with Ms Lavin that independent living does not start at 55. That is a very important issue that she raises today. Could she comment on that? I deal with a lot of people who want independent living and the first barrier that is put up to them is the age qualification. The age of 55 is wrong and this must be addressed in the housing strategy. It is an issue that we could perhaps deal with again.

I wish to be associated with Deputy Tully's words about the great work done by Inclusion Ireland. I thank the organisation for the work it does on behalf of so many. I have a couple of questions. There is a reference in the presentation to public information accessibility. In terms of Government information, and information from the Oireachtas, perhaps Ms McDonagh could come back to us on how accessible it is for people and what we need to do differently. Previous contributors to the committee have spoken about this issue, but I would like to hear her comments from the point of view of how accessible it is. It is very important for us as a committee to hear such evidence from witnesses on the day-to-day lived experience. The information must be accessible if it needs to be changed. I would welcome a comment on that.

I agree with Deputy Tully's point that education is key. The witnesses say that themselves in their contributions. I have spent the past week dealing with a person who has a four-year old non-verbal child, who at this stage has contacted eight schools in the area. The current primary school is very good and has been very fair to the family. The child's siblings are in the primary school. However, the school has informed the parents that it cannot cater for the future needs of the child. The father came to my clinic on Monday night, and he was in a desperate state. The parents had contacted eight schools in the Kildare area and in a bordering county, but they cannot get anywhere. Unfortunately, that is symptomatic of several conversations I have had with parents. Speaking to members of this committee, I know that is the case with other parents as well. It goes back to the issue contributors have spoken about previously, which was mentioned again this morning, namely, planning. I refer to the gathering of information and data. I would welcome a comment from the witnesses on what we are doing wrong or not doing in regard to the gathering of such data. It is the key and cornerstone of how we develop policy on where we should go with autistic people. That is most important. If we are to plan for schools and special schools if they are needed, then we must gather the data. There seems to be a lack of joined-up thinking in that regard. I would welcome a comment on that.

Going back to independent living, I am dealing with a number of people who are living independently, and I see the advantages in their daily lives and what it means to them. I am struck again by the 80% unemployment rate among adults. Perhaps Dr. Roddy could comment on that. On the previous occasion the matter was raised I thought it was 60% but if it has gone up to 80%, that is even more worrying. We all need to do more to help people get employment, but that is a worrying statistic if we have 80% unemployment at this stage.

I also wish to refer to the cost of living with a disability. It is mind blowing that neither Dr. Roddy nor Inclusion Ireland is on the national inclusion strategy. That is something we must pick up as a committee. Dr. Roddy's credentials go before her, in addition to what she presented to us today.

That is what we should be listening to. We should be listening to the cost of disability.

There are families with an average debt of €3,260 per year with the cost of taking care of their loved ones. How is that broken down? Is it the cost of keeping lights and heat on? I know there is a cost-of-living crisis, but I ask for a more in-depth breakdown. I know Dr. Roddy fleshed out a little bit of it. We have heard from families who have come in previously that the cost of caring for their loved ones is a considerable issue. I ask Dr. Roddy to flesh that out from her expertise a bit. I cannot believe that.

Dr. ?ine Roddy:

The unemployment rate is at 80% for autistic adults. It is extremely frustrating because so many autistic adults express a deep desire to be in employment. It gives great meaning and dignity to their lives. They wish to be in employment, but there are barriers to accessibility and being involved in employment.

A few studies have looked at the cost-effectiveness of programmes which try to have a support programme in place to help with the interview process and being involved in employment and through which people might advocate for the needs of autistic people and for the employment setting to be appropriate. There is some evidence to say this is an effective way to go about it.

Autistic people have a great many talents to offer. This is where it is so frustrating. They have such potential if they are just given the appropriate supports and opportunities. There are different specialist organisations that work with AsIAm in trying to increase employment rates in Ireland but so much more needs to be done and it needs to be done at an earlier stage than when they hit 18 or are in their 20s. Key progression stages are from primary school to secondary school and finishing secondary school to third level. This needs to be happening at a much earlier stage to get the programmes in place. Unemployment is at 80%.

My concern is that parents were expressing that much of the debt is from paying for private services and supports. The types of services they are going for can be very unregulated. Parents are paying for services with the best intentions in the world, but there may not be an evidence base to back up what they are paying for. Of considerable concern is an overall lack of information and supports for parents, when their child is diagnosed with autism at a later stage and they are paying privately for services.

Some services and supports might be great and parents may find them helpful for the child, but others may be questionable in approach. Parents are doing it with the best of intentions. Debt seems to be more in the direction of parents paying for private services rather than, say, extra living costs. That is what they were focusing on. Parents might decide they will go all out for a special intervention. If the therapist says it will be at least a year, parents may go into debt for the intervention. That is what they were reporting with regard to the debt.

Ms Angela Locke-Reilly:

I will make a point as a member of one of those families. My son has high-support needs. Many of the costs are hidden costs that one would not think of. My son might go for two months at a time only sleeping for two hours per night. We are up, as a family, for 22 hours. We are using electricity, eating and watching television. We have the lights on. He also has loads of extra gadgets because he would not play with toys or anything like that. He would not get the concept of it. Much of the time, we have lights on and things that make noises, buzz and whir. My electricity bill is a great deal higher than that of any of my friends.

My son has continence issues. His continence packs weigh a tonne. He is 15 so the packs are heavier than they would be for a baby. One is not talking about babies' diapers. My bin costs, because they go by weight, are through the roof. People do not often write issues such as that on surveys because they often get asked about things such as private therapy. Do not get me wrong, therapies cost a lot. That is a very valid point. However, one has to think about the hidden costs as well.

When my son was born, because there was such as a lack of services at the time, a few other parents and I started our own organisation to start providing services ourselves.

We worked every hour God sent for many years to build it up to a position where people would be scared not to offer us what we deserved. If we came knocking at your door to ask about your services, we wanted to know that you were hiding behind the couch. We did that on purpose. It should not be necessary to do that. I got a master's degree in disability studies to be able to better support my child. I should not have to do that. We have to do all these extra things. Often the things people struggle with and the fight we have are unseen. Something I keep banging on about to Ms McDonagh is the cumulative effect of having to advocate, constantly needing to complain about money and having to fight. A person gets fatigued and beaten down by that over the years. When people constantly feel that schools do not want their child, services are not there and no one wants their child, that continuous chipping away over the years takes a real toll on their mental health. Sometimes when people look at the research they see not the families but only the numbers.

Ms Derval McDonagh:

Ms Lavin wanted to speak about her experience around housing. Senator Wall asked a question about that.

Ms Sarah Jane Lavin:

About a year ago, my mother rang the local Deputy to ask where we were on the housing list. She was told that I was on it and that there were places in Naas, but I would have to be aged over 65 to avail of them. The Deputy said "hang on a minute", there were places in Celbridge for which I needed to be aged over-55. What could my mum say? She explained that I do not want to go into residential care. That was the alternative. We said we would have to wait and see what happens. I have not even seen the outside of these houses. I am trying to figure out where in Celbridge they are. I would like to look at the outside because if they have to put €2,000 worth of money into them, they are no good. They could be old houses or modern houses. We do not know.

Ms Derval McDonagh:

Senator Wall also asked about accessible information. Ms Lavin has spoken about how challenging it is to apply for social housing in the first place.

Ms Sarah Jane Lavin:

It is very challenging. I asked my service about the housing list approximately five years ago when we decided to sell the house in Leixlip. The staff filled out the forms with me but there was no record of that when we asked three years ago. We had to do it all over again.

Ms Angela Locke-Reilly:

The application process for housing is horrendous. Once of my tasks last year was to do research into housing and to look at the practical things we could do to support people. The number one thing that people said was that the application process is a nightmare. When I looked at the application I could not believe that it was over 25 pages. It is ridiculous to expect a person who has an intellectual disability to complete such a form and get all the documents together. It is an ableist system that puts up barriers to prevent people getting access to housing. Many people did not even know they were supposed to go on the housing list or could go on it. There seemed to be a lack of information for people. If people look for it, they will find it on different Government websites but that is not an option for some people. They need information to be more accessible to them.

Ms Derval McDonagh:

I am glad Ms Locke-Reilly brought up accessible information. It is a core pillar of the work of Inclusion Ireland. She has probably seen that we have moved beyond creating easy-to-read documents, into video and accessible information in multiple formats. There are many myths about accessible information, for example, that putting some pictures on a document means it is done. It is really about a total rethink of how we communicate with one another respectfully and openly.

Giving people information is about giving people power. Ultimately, one of the biggest barriers autistic people and people with intellectual disabilities face is the lack of accessible information and the lack of accessible processes such as those relating to applying for housing. We need to look at it in a layered way so that accessible information and communication are seen as human rights. It is the bit that gets you the seat at the table. If that is not there to begin with, that barrier has removed you from housing and so many other aspects of civil life so it is a really important point. Inclusion Ireland is creating its new strategy, a key pillar of which will be inclusive communication and supporting Government and State agencies to become more inclusive in how we communicate.

I am not saying Inclusion Ireland is perfect. We are constantly learning from people with intellectual disabilities, who give me really open and valuable feedback every day when I mess up. We do not get it right all the time. It is about a process and journey around inclusive communication and it takes time and a willingness to listen and also to mess up and figure it out. We will be supporting State agencies to develop communications systems.

I thank the Deputy for raising the point about housing. Ms Lavin has spoken about her direct experience and the barriers she is experiencing. Housing is another core pillar of the work of Inclusion Ireland. In my opening statement, I mentioned that we still have 2,400 people living in institutional settings and 1,300 disabled people under the age of 65 living in nursing homes while thousands of people are living at home with their families and have never had an opportunity to have their own front door key. The Government published the disability capacity review highlighting all these issues. We are calling for the implementation plan of this to be published. We are still awaiting this implementation plan. Our understanding is that when disability moves to the new Department officially, that implementation plan will be looked at and prioritised. The only way out of this is planning.

Senator O'Reilly spoke about the crisis piece. We are waiting for a crisis to happen. If an elderly carer passes away, an emergency plan must be put in place for somebody. In the most distressing of times, it is completely non-human rights compliant to have to go through that for something that is entirely predictable. We know there needs to be "X" amount of additional housing every year for people with disabilities. What ends up happening in emergencies is that we go for a more institutional model or something that is put together quickly that does not involve the choice and control of the disabled person. They do not have a choice about where they will live and who they will live with, which is the hallmark of institutional living. That needs to end and the only way out of it is a comprehensive plan and the publication of the implementation plan for the disability capacity review.

Joan Collins (Dublin South Central, Independents 4 Change)
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Every time I speak to families in my area regarding accessing services, the costs, trying to get private access to assessment of needs and therapies such as speech and language therapy, the hurdles people have to jump and the struggle they face to get basic services do not just upset me, they upset the families. I welcome the work of Inclusion Ireland on supporting families and people with autism.

The question is what can be done about it. We have been talking about this for so long. It was the same with the Joint Committee on Key Issues affecting the Traveller Community, of which I was a member. There are more reports, recommendations and situations that have been teased out on health, housing and other areas but those recommendations are not being implemented. Education is based on assessment of need.

That is the main thing in education in an autistic person's life. If a child does not get a proper assessment of need we have no chance of moving things forward. That was the huge failure of setting up the CDNTs and pulling those children and families away from the organisations they were linked with before that, where some of them were getting speech and language therapy and so on.

What can we do? We know that over 1,000 children had assessments of need at the initial stage of CDNTs being set up and they were useless; they were not what was needed. Our Lady of Hope School in Crumlin was set up recently and it has no therapists, even though it is a special needs school. The reason it does not have them is the children do not have assessments of need and so they do not know what the children need. That is one of the reasons it does not have therapists. As well as that, as was said, one third of the CDNT posts are vacant, which is a problem anyway. Is there a case to be made that we should look at what happened initially with the CDNTs and then pull all the specialists in the different community healthcare organisations, CHOs, together and say we should redo all children's assessments of need so we know what those children need? The next step is to try to recruit people to offer those services. I am fearful that because of the crisis in the CDNTs and with the therapists, the service will go into private hands and an awful lot of parents cannot access private services because they are full. The unmet needs cost, as was mentioned, is just building up. Is there something crucial we could do to set up children for the future? Then we could work towards pulling together those therapists who are needed to support children.

I want to ask Dr. Roddy about the national autism innovation strategy. Who set that up? Is it set up or is it going through the process of being set up? How confident is Dr. Roddy that this strategy will be implemented? It has already been mentioned that an implementation plan is needed for the disability capacity review as well. What can the committee do to push forward some of the basic things we have to get right to move on from the rest of the issues like housing and planning. We should be legislating that so many houses in any complex should be set aside for disabled people or for people with autism in the future. That should be in the planning laws.

I was listening to what Ms Locke Reilly was saying about incontinence nappies. I was talking to a family about this six years ago. The father was proposing that there should be a special collection and a special bin for incontinence nappies that would be collected for free because not only is this costing families more money, but from an environmental point of view they should be treated differently from the point of view of disposing of them. We have bin collections that are privately run, however, so that was not going to happen. Maybe we could propose something like that to the HSE so it could provide some sort of service to those families such that incontinence nappies could be collected and disposed of separately.

The following point is for Ms McDonagh and I mention the conference that Inclusion Ireland held. A variety of people, organisations, teachers, special needs assistants, the Ombudsman for Children and Irish human rights and equality policymakers attended. What will happen from that conference? What can the committee do in approaching the national autism innovation strategy? Should we insist that organisations like Inclusion Ireland be involved?

Dr. Roddy said there are only three health economics experts in the world. They should be on that and implementing that. I will leave it at that. There were some wide-ranging comments there.

Micheál Carrigy (Fine Gael)
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We might try to tighten things up a bit as regards questions or we will not get all the members in. We will start with Ms McDonagh this time.

Ms Derval McDonagh:

I might bring in Ms Locke-Reilly at various points if that is okay. To address the issue around the resourcing of the CDNTs and focusing on assessment, there needs to be a bit of thought, at this committee's level, put into the legislation we currently have in Ireland and what might need to change in that regard. Obviously the EPSEN Act is under review this year. That has been welcomed broadly by advocates and we are working on submissions around that and supporting families and people with intellectual disabilities to be part of that consultation process. That is hugely important. We need to get the legislation underpinning inclusive education right but there is another piece of core legislation, the Disability Act 2005, which is no longer fit for purpose and needs to be reviewed. In an ideal world, the Disability Act and the EPSEN Act would have been reviewed in tandem because they talk to one another. They should put children, hopefully, at the centre and look at what children and families need. Often the fixation on assessment is a direct result of the fact that it is the only thing people are legally entitled to. Under the Disability Act parents are legally entitled to an assessment of their child's needs but they are not entitled to any services or supports after that. It is no wonder there is such a focus on assessments because if that is the only thing I can get legally I am going to focus on that. For many children, that assessment is absolutely necessary, valuable and an essential part of their whole plan but it is not the only part and should never be. Assessment should be a dynamic process that is part of the supports for a child. It should be ongoing and reflective of a child's needs as the family's needs change. If I was to name a solution, it would be to look at the legislation that is there right now and what needs to be reviewed so we can better serve children. The Disability Act is a key piece that needs to be looked at.

The Deputy mentioned the cost of disability. We have called for an implementation plan around the cost-of-disability report. The Government has published the cost-of-disability report but we need to see that implementation plan as well. We called for an additional and specific cost-of-disability payment in budget 2023. We were pleased to see that there was a once-off disability payment specifically for disabled people but really that should only be a stepping stone to a more fundamental change in social welfare payments for people and a stand-alone cost-of-disability payment.

The Deputy asked about the Inclusive Education Conference. That was a phenomenal opportunity to bring people together who possibly would have been seen as having very different opinions about the future of inclusive education. When we were in a room together, there was a lot more that we had in common. Our plan around that is to publish a report. It is being finalised at the moment and will be published in February with a number of agreed recommendations from the participants highlighting what needs to change over the next number of years. Fundamentally, what we have created out of that conference is an inclusive education alliance, which is a group of people and organisations that are coming together with a shared purpose of working towards an inclusive education system. The committee will be hearing more about that over the coming months as we bed down that alliance of organisations and interested people. We will certainly share that conference report with the committee. Hopefully that will give some really solid, concrete information about the next steps that should be taken on the path to inclusive education.

The final point, which is where I will bring in Ms Locke-Reilly, was about solutions for children. I mentioned assessments of need and legislation but ultimately what some of this comes down to is proper integrated care and support for children. When we see integrated care work well, that is when all of the organisations that may be involved in a child's life come together to focus on that child and that child's plan, and that family's plan, develops from there.

Ms Locke-Reilly may want to share some experience she has of both integrated care and care that is not integrated and her thoughts on that.

Ms Angela Locke-Reilly:

When my son was born we lived in Mayo, which was, at the time, was one of the pilot counties for the PDS model. They did everything the way it should be done. It was amazing and brilliant. We had a key worker who pulled in all our different therapy programmes and worked with the families to build it into their life. For example, for us, a physiotherapy exercise might be playing tug-of-war in the bath instead of being an intensive physiotherapy session. It felt like it was doable and organic. We were doing what every other parent in the country was doing whether his or her kid was disabled or not, and that was fantastic.

We even had a liaison nurse who connected our disability support team with our medical support team, including paediatricians and consultants. All the different systems we were in were connected and communicated with one another so that everything we did was built into our life. It was just so efficient and everything ran so smoothly. We never had a problem getting access to therapies.

Other services that were offered were camps or activities that were in place of physiotherapy. I keep calling them physio-output because people usually know most about that. If parents did not have access to a physiotherapist for a few months, they might have access to some other kind of physical activity with their child that they could do once a month and then continue that at home. Everything worked so well.

When my son was three we moved to a different country where things were done in the older, more medical, system and they just were not good. We had to go into the centre where I was pushed off to the side. I was not involved in the care at all. I was not seen as part of the team. That is one of the strengths of the PDS system - the family is seen as part of the team. Everyone is working together. The family works with the different support teams. All the support teams work together, be it on education, health or medical. That integrated system was so effective.

With regard to education, a huge problem, and this is something on which I made a video for our conference, is the difference between integration and inclusion. Integration is often pitched as inclusion and people confuse the two and that is what scares many families. They think we want an integrated system where a special education system is crowbarred into the mainstream system, as we have it now, and that is not what it is. The pathway to inclusion is the most important thing to remember and that it is going to be incremental. Of course, my child cannot be put into a mainstream setting at the moment because they would not be able to support him. That would not be good for him or the other students. It is that change, that journey and that pathway from the system we have now and it is going to take time. It is not going to happen overnight. It is important to make sure families know it is not integration, but that it is inclusion and it will take time.

Dr. ?ine Roddy:

I thank the Deputy for her question. She mentioned the national autism innovation strategy. Last summer there was a call for people with lived experience among those involved were autistic adults, cares and experts. I applied and was not invited to be involved. I was informed a draft would be made available publicly on which I could comment but that has not been made available yet and I do not know when it will be. I am waiting for an update on that.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I thank all the speakers for coming in, particularly Ms Locke-Reilly and Ms Lavin, who gave us a fantastic insight. The great thing about this committee is that it is very humbling and we get a great indication of with people and advocates, such as them, are doing. It is extraordinary work and hopefully, in the fullness of time, it will benefit not only them but future generations.

Both Ms Locke-Reilly and Ms Lavin will have dark days ahead of them. They should never underestimate the work that they are doing, not just for themselves and their own families but also for countless families across the country. I know those families who are listening in are hugely appreciative of what the witnesses are doing.

I have a question for Dr. Roddy first. I greatly value the work that she is doing. This speaks to many of the misconceptions that exist about autism, particularly among people like us who are elected and are meant to make changes. A key line in the submission is about the research from the LSE. It counted the economic impact of autism as being £32 billion. We need to move from a situation where we consider autism as an economic cost and instead look at it as an economic opportunity. We see that when we put autism front and centre, particularly in companies, it can have a positive impact on the company and greatly enhance the whole work experience. From the witnesses' research, the costs are particularly frightening. One in three families faces debt as a result of having a child with autism in the family. If there is more than one child with autism, that issue is compounded. On the person-centred approach, is Dr. Roddy suggesting dropping some aspects of what is being done at the moment? Will she expand on that?

Dr. ?ine Roddy:

That is a good question and I am trying to think it through. There is room for drastic improvement in how things are done. That goes back to consensus and the question of how we move forward. If we take the approach of always criticising what is currently being done, people get defensive and progress will not be made.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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To play devil's advocate, parents listening hear that the services are challenged, but those services are what they currently have. If there is a suggestion that we change this without having a real, viable alternative, then parents are of the view that they have a narrow window to get the best supports possible. What specifically would Dr. Roddy change?

Dr. ?ine Roddy:

I would definitely increase training and awareness among health professionals about the needs of autistic people. From what parents reported, when they eventually got access to services, some expressed great frustration about the lack of understanding and awareness about autism. They waited for so long to get an appointment and when they eventually reached it, they may not have been satisfied with the service. Others reported that they were satisfied, so I was balanced in my reporting. Greater awareness and training are needed. There is controversy when, for example, a health professional or professional in an educational setting has more autism-specific training, which is considered best practice, but others disagree and say that we should move towards a general disability model. The autistic community considers there is a requirement for more awareness of their particular needs.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I am conscious of the time. I think Dr. Roddy mentioned applied behavioural analysis, ABA, therapy.

Dr. ?ine Roddy:

I did not.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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My apologies. I thought I picked that up. I was wrong and stand corrected. Dr. Roddy is attached to the Atlantic Technological University. It is great to see that her work at the school is so strong. I am particularly interested in the autism policy recommendation and implementing that person-centred approach. A big challenge for us is to get third level to start to embrace this. What kind of reaction is Dr. Roddy getting from her bosses?

Dr. ?ine Roddy:

They are extremely supportive. We lately became recognised as the first technological university to be autism friendly. We are linked with AsIAm. There are changes in the universal design for learning, UDL, approach and quiet spaces for adults. They are extremely pleased that I am representing the university today to try to push autism policy forward. There are significant opportunities at third level for autistic people to go to college. The more that we can do to develop and expand on that, the better.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Unfortunately, I am out of time.

Micheál Carrigy (Fine Gael)
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The Deputy could get another question in.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Lovely. I will focus on Ms McDonagh's suggestions regarding investing in mainstream schools. She is correct that we have to move away from the concept of special schools. We need integration. That model is working particularly well. I can see resistance to it from a certain category of schools' teachers and management. However, at the same time, we have to concede that €1 in every €4 spent on education is being spent on special education. We probably need to get better value for our money and invest more. There is an opportunity with regard to summer provision, which we have mentioned a number of times in this committee. I would welcome Ms McDonagh's views on it. It is challenging to get staff for summer provision at the moment. With regard to the people coming through third level, I have told the Department that we should challenge third level students to put their hands up for that this year. Does Ms McDonagh believe there is an opportunity in that space?

Ms Derval McDonagh:

There is a significant opportunity there. The summer programme needs to be seen as part of a continuum of support for children and their families. Ms Locke-Reilly, Ms Lavin and myself were speaking earlier about the need for family-centred planning with regard to supports. The reason the summer programme gets a lot of attention, as it should, is that families and children need more support in fundamental ways. There is a significant opportunity to bring other people, such as trainee therapists and therapists who want experience in the area, into the summer programme. That is a win-win situation. It is difficult to increase the number of places for therapists in third level education because you cannot get placements. Is the provision of placements as part of the summer programme not an ideal opportunity? We could encourage people to learn about disabled children, how to work with them and how to support them in ways that are rights-compliant during the summer months. It is a significant opportunity and it would be a win-win for everybody. It needs to be looked at.

I would love the summer programme to be examined in the context of the overall supports that children and families need. Sadly, the families of some children, particularly those who have higher support needs, only get the bare minimum. It is, therefore, no wonder that there are a lot of calls for the summer programme to be put in place. However, it is just one element of a bigger picture as regards supports. Regarding Ms Locke-Reilly's beautiful picture of an integrated model of support for children and families, we would love to see part of that involving looking at what the child and the family need to thrive and flourish. We all need support. There is not a family in the country that does not need support. However, for many families who do not have disabled children, many built-in supports are just taken for granted. Kids go off on sleepovers to their cousins' homes and so on. That is not possible for some children with disabilities. The State needs to build in supports for those families so that they can thrive and flourish.

Some of that involves home-based supports. Families contact Inclusion Ireland seeking respite but, when issues are teased out with them, what some are looking for is just day-to-day supports. It is about needing to go out to get the shopping or to visit your elderly mum. Things need to be built in around the family to make it work. There needs to be a broad look at that. We are going to do some work this year looking at family-centred supports, including home support and what families are really looking for when they talk about respite. Some families are looking for overnight respite but, when things are teased out with people, you would be surprised by what they need in their family life with regard to practical day-to-day supports.

Micheál Carrigy (Fine Gael)
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On the summer programme, I mentioned earlier that our committee launched a report before Christmas that recommended some of things Ms McDonagh has mentioned. We read out the date on which it is to be debated. It will be debated in the Dáil in the first week of February and it will also be discussed in the Seanad. There is a lot of work going on behind the scenes to make changes. We hope the Department will have implemented those recommendations for summer 2023. That is important. Senator Flynn is next on my list. When she has finished, we will take a quick break for a couple of minutes.

Eileen Flynn (Independent)
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I am trying to think of something that has not been said. I thought I would get in on the summer programme and the work the committee has done but the Chair came in ahead of me.

Micheál Carrigy (Fine Gael)
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I apologise. I am not psychic.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
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He did it on purpose.

Eileen Flynn (Independent)
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Deputy Flaherty did a little bit of it as well. He spoke about the summer programme.

Eileen Flynn (Independent)
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We did some good work of which we are all proud. There is cross-party support for places in summer programmes. I recommend that people consider the recommendations because they were influenced by mothers of people who are autistic, by autistic people and by carers. Why were Inclusion Ireland and Dr. Roddy not invited to be part of the conversation on the autism strategy?

On independent living, we have a housing crisis and everything else that goes with it. This has been the case in Ireland for as long as I can remember. How many people does Inclusion Ireland work with? Does it work with people from other ethnic minority groups?

In terms of intersectionality, the delegations were right with what they said about immigration and inclusion. People are afraid of that. When we talk about integrating into society, we are referring to the desire to be normal. There is no such thing as any of us being normal. The word "normal" is thrown around and people can actually prefer that, which is right.

We need to be careful when we talk about special schools for people who are autistic because there are many people who can go into mainstream schools, and have a right to be in the mainstream educational system, but they will get segregated into a special school because they are autistic. We need to look at how this is done going forward and ensure that we do not put people into boxes and corners because they deserve an opportunity to be successful.

I am a member of the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science and of the Joint Committee on Disability Matters. The former committee has done a lot of work to ensure that universities are autism friendly. We are also looking at Leinster House being autism friendly, which is a step in the right direction.

Again, I wish to refer to intersectionality. On Sunday evening, I spoke to family members in Labre Park who referred to how common autism is among the Traveller community. Basically, it was something we never spoke about before. Many people from minority groups fall through the gaps. Every child in the country has access to education and I do not see access being a big issue. I believe the issue is getting an opportunity to be successful and reaching your full potential. Why were Inclusion Ireland and Dr. Roddy not invited to the conversation on the autism strategy? I am sure that other members, like myself, are interested to know why.

Ms Derval McDonagh:

Ms Lavin submitted an application as a member of our board of directors, with Inclusion Ireland support. I cannot answer why we were not invited but we were not.

Eileen Flynn (Independent)
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What about employment after students have gone to college, etc? I am thinking of people within my own community as well and what I know from being an "other". I refer to people who are autistic but have completed education and want to go on to employment. I ask because this issue has not been touched on today. It is important to have education but I want to know what happens after that.

Ms Derval McDonagh:

That thread needs to be drawn if you have a fully inclusive education system. I totally take on board the point that the Senator made about intersectionality. Traveller children and children from minority backgrounds who have intellectual disabilities or are autistic face multiple barriers.

Eileen Flynn (Independent)
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Yes, and you may be economically disadvantaged if you are from a poor community. With the additional barrier of being poor, how do you meet the needs of your child who is autistic while also meeting the needs of your family? This is an area of interest.

There is a homeless service for pregnant women. I cannot think of its name but I did some work for it before Christmas. The service is conducting a pilot project at an economic level on the development of children. Its work is absolutely fascinating. I could do some work on it with Inclusion Ireland. I suggest that a pilot programme or a study be done on how children from poorer communities can be successful.

Ms Derval McDonagh:

Would Senator Flynn like me to touch on the employment issue?

Eileen Flynn (Independent)
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Yes.

Ms Derval McDonagh:

Employment absolutely needs to be central in all of our thinking on rights. This year we are doing a piece of work with the Irish Human Rights and Equality Commission on the barriers disabled people face in terms of employment. As we said earlier, only 17% of people with intellectual disabilities are in paid employment. This process is about bringing together people with lived experiences who will share their stories on the barriers they face. They will co-create with employers a guide on how better to support people in paid employment. It would be very interesting if we also took an intersectional approach on the multiple barriers faced by people from the Traveller community and other backgrounds. It is incredibly important that we also capture this. I can keep Senator Flynn updated on the plan and its progress.

Ms Angela Locke-Reilly:

Many people in the LGBTQI+ community are also neurodivergent. There are a lot of intersectionality issues among many communities. It is something that we focus on quite a lot.

Eileen Flynn (Independent)
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I work with a person with regard to the disability committee and this committee who is also in the LGBTQI+ community. I understand what Ms Locke-Reilly is saying.

Ms Angela Locke-Reilly:

I would like to make a point on human rights approaches. I keep hearing it said that people from the autistic community have a lot to offer. Something I have raised a few times is that human rights are not transactional. It does not matter if people have nothing to offer, they still have the same human rights. Families with children with higher support needs hear people argue that there should be investment in children's education because they will be working when they are older and they will pay taxes and give it back. What about a child with higher support needs who might not do this? I want to impress upon people that human rights are not transactional. It does not matter how much a person has to offer, a human right is a human right.

Micheál Carrigy (Fine Gael)
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Does Dr Roddy want to comment on the strategy?

Dr. ?ine Roddy:

I do not know why I was not invited and I will not comment further on that.

I completely agree with the point made by Ms Locke-Reilly. If autistic people are going to third level that is great. It would also be great if there were more work placements. The transition from third level to employment can be very challenging. Again, it is not transactional. Everyone has different needs. It is about people having the best quality of life they can and that we can do whatever to facilitate this. It is more about quality of life and dignity than what people can achieve academically or financially.

Eileen Flynn (Independent)
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It comes back to this. We are all different-----

Dr. ?ine Roddy:

Exactly.

Eileen Flynn (Independent)
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-----and we have the right to be different while having equal value in society. This is what it comes down to. I thank the witnesses for coming before the committee. Some of the recommendations are very interesting.

Micheál Carrigy (Fine Gael)
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I indicated that I would take a break for a few minutes and I will do so now.

Marc Ó Cathasaigh (Waterford, Green Party)
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I thank the witnesses, both for the opening statements and the testimony. I will pick up on the last point first, that is, the idea of human rights. The trap into which all of us fall, even those on this committee, is in talking about autistic people as if they were one type of person. It does as much good as talking about a Waterford person as one type of person. There will be the same cross-section of ability, aptitude, humour and personality. It is enough to say they may share some common attributes. I think Ms Locke-Reilly said that to talk exclusively about how they could be wonderful, productive members of society if only we could get them through third level is not to understand the cross-section of people we are talking about. It is entirely inappropriate.

We did about two years of very little sleep. It was only two years but, my God, I know the pressure it places on people and my heart goes out to Ms Locke-Reilly. Two years were enough of it. I was very glad when it passed. We know on this committee that one of the attributes of neurodivergent people can be disrupted sleep patterns. It puts considerable pressure on families. There is no saying it otherwise.

Dr. Roddy's statement is stark but it is factual. Autism is recognised as the most expensive condition internationally. I know our understanding of autism is evolving all the time and she may not have longitudinal research. However, are there any contexts we can look at to better understand - I am loathe to say - value for money? We know investing early produces better outcomes in the long run. As policymakers, it is useful for us to be able to key in to those facts and figures, notwithstanding what Ms Locke-Reilly was saying about facts and figures not showing families. If we wish to make policy on a national level, can we point to research that makes all the clearer the argument that investing early represents - a phrase I do not like to use - good value for money?

It is difficult to have any conversation about access to mental health services at present without having regard to the CAMHS report. People with autism are generally excluded from CAMHS because they have that kind of co-diagnosis and yet, the implications of mental health among the autism community include anxiety and suicidal ideation. I will leave Dr. Roddy an opportunity to elaborate on the idea of personalised care pathways, which goes back to my first point that not all autistic people are the same or wish to access services the same way.

I want to give Dr. Roddy and others an opportunity to speak more about naturalistic types of supports. I am not sure that I understand those supports as well as I would like. She referred to "social prescribing" in her opening statement. I have a rudimentary understanding of that and ask her to elaborate on it a little.

Dr. ?ine Roddy:

On the evidence for early intervention, I can only comment on a certain amount because the work is not published and there is stuff in progress. A study has been done called the Pre-school Autism Communication Trial or PACT, which is a parent mediated intervention programme that was set up in the UK. The programme involved speech and language therapists working with parents and helping them to interact more with their child, which, in turn, led to an improvement in outcomes. Further research on the cost effectiveness of that is being finalised and the results are promising. However, I am uncomfortable with that language and fully agree with the Deputy that this should not be described like a transaction in a bank. There is no solid foundation whereby if you spend "X" amount, you will get "Y" in return. I believe that there is a huge lack of evidence in this area.

On the naturalistic types of supports or interventions, international research and practices have moved more towards, say, play therapy where it is more about the parent or parents understanding the child's communication pattern, maybe in a different perspective, and understanding more about it if the children are struggling. It is trying to interact at child level and where the children are at but help with their communication. That is what is being analysed internationally. There are pros and cons to this. I am mindful of the fact that the State has only a certain amount to spend. If you look for intensive resources then you must know what is an appropriate level of care. There is a lot of uncomfortable conversations needed. There is no best practice guideline to always look to and know what is the appropriate level of services that need to be provided in certain scenarios.

First, there is a huge lack of guidance for health professionals in what should be best practice for autism care, to a certain extent. Second, they are moving more towards a parent-type of training programmes to help parents understand when their child is distressed or, through play, that they are able to improve social skills and communicate more clearly. That is what it is moving towards more internationally and different pilot programmes, and programmes have looked at that.

Marc Ó Cathasaigh (Waterford, Green Party)
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Is there a suggestion or danger that this would make the autistic child more dependent on their parent? Does it become too parent-dependent or focused or is that not what research shows?

Dr. ?ine Roddy:

I have not come across that in the evidence. I am mindful, from my own research, of the hidden costs, as Ms Locke-Reilly mentioned, and the level of stress experienced by parents. These parents are sleep deprived, exhausted and extremely isolated. They may not have the support network of families who support or understand their situation. It can also be very difficult visiting other family members. There are so many different dynamics in a family in terms of the level of support that they need. To come along and say, "spend an hour each evening" may feel too much for some parents. You are, therefore, opening up to greater, maybe, health inequalities. I fully acknowledge that some parents might be more predisposed, say, to being able to do this programme than others. I am not saying that this is the ideal solution but saying that internationally this is moving more towards that. This is where autistic adults would report that they would feel this is more a respectful approach than perhaps correcting behaviours, which are actually the child communicating distress. I am not a health professional but a health economist so I am not stepping on other people's toes. I have just cited evidence and what autistic people are reporting.

It is very important that we really listen to what autistic adults say they found helpful as children and to learn from that. We must also listen to what was inclusive, in an educational setting. We must also learn what type of teachers did they feel most comfortable with and flourish, and learn what situations they found traumatic.

That applies to mental health settings and different sectors of society. A great amount of research is needed regarding the level of trauma that autistic people experience. This must inform how we develop practices in future. The naturalistic approach is being viewed more positively in respect of research, but, again, in an Irish setting, how does this work best? When I did the research on how parents would like the services to be delivered, many said they would prefer them to be in a more educational setting than in a clinical setting and having to take time off work to attend appointments. Any recommendations, therefore, must be adapted to an Irish context and what parents living in Ireland feel would work best for them. There would be positive outcomes long term longitudinally from children taking part in more parent-mediated supports.

Marc Ó Cathasaigh (Waterford, Green Party)
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I thank Dr. Roddy. I will finish with a comment rather than a question. If we want improved labour market participation rates, we are talking about inclusion. The labour market needs to move to the person rather than trying to make a space for the person to integrate into the labour market.

Micheál Carrigy (Fine Gael)
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I thank the Deputy. I call Deputy Pádraig O'Sullivan.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I welcome all the guests. I had a list of questions, and I was struck by what Ms Locke-Reilly said before the break. I will, therefore, start with her. She recounted her own experience in Mayo regarding PDS. Her experience sounded much different from that we hear about throughout the country. In that context, and I am not too au faitwith Mayo and how it was resourced, I assume the service was adequately staffed and resourced for her to get that kind of return. I ask her to comment on this aspect. Ms McDonagh, with her background, might then be able to elaborate on it.

Ms Angela Locke-Reilly:

It was adequately staffed. Another point I would like to make is that I sat on the governance board for an intervention as a parent representative. Two of us sat on that governance board, which met regularly. Services were going great, but then, after a while, the PDS system began to break down and people were not doing things the way they were supposed to. The governance board was not meeting as often because people in more high-level positions could not get to meetings or they kept not prioritising meetings. That is what it felt like. In the end, there were only a couple of parents there and a few other people to make up the quorum. Things started to fall apart. When things were working, though, they worked really well and it was great. The PDS ideal is fantastic but it needs to have good workforce planning behind it, good resource management and there must be collaborative practices. It is not possible to work in silos. The HSE's policy is awash with the words "we cannot have silos", but this is all I seem to see. There just does not seem to be enough collaborative practice. This is across the board. It was the same in housing when we looked at the local steering groups for housing disabled people. People are just not working together and it feels like resources are not being maximised in this regard.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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PDS can work if it is resourced.

Ms Angela Locke-Reilly:

Yes, it can work if it is resourced properly. Additionally, a major aspect we must think about is the buy-in. In any system, whether it is in education, health services or disability supports, it is necessary to examine strong leadership and building capacity for our leaders. That buy-in must be achieved so that the people involved are passionate about and driving the model.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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It is good to see in Mayo in that case that there was not a difficulty in attracting therapists and people across that kind of spectrum.

Ms Angela Locke-Reilly:

That was at that time, which was 15 years ago. I do not know what the situation is like now. I cannot speak to how things are now, but that was our experience at the time.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I am just trying to tease this out because I assume if it was adequately staffed that people wanted to work there and join the organisation. This leads me on to Ms McDonagh. I will probably put her in a difficult position, but here are obviously recruitment difficulties in the wider health service-----

Ms Angela Locke-Reilly:

It was also a lovely place to work. Even in the building, because everything was resourced, it did not feel like people going into a clinic when they went in.

The places where I have gone to more recently for services for my son have been like primary care centres and that sort of thing or service centres. It feels like going into a hospital. The second I roll Jacob's wheelchair in there, he is holding on to doorframes because he does not want to go in. In contrast, there were giant teddy bears in the place in Mayo when we went in. It was called the safari club. It had lions, tigers and zebras and everything was colourful. It was a very welcoming and respectful place. It felt like there was respect for the children and that they were little human beings and not patients.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I thank Ms Locke-Reilly. I turn to Ms McDonagh. Based on her background and experience, why does she think we are having these difficulties attracting the necessary staff into providers nationally, such as therapists, etc?

Ms Derval McDonagh:

What we are hearing from people working on the ground is that several issues are going on. Any change process is challenging. Reconfiguring multiple teams in a short time was always going to throw up challenges. This definitely has an effect on staff and morale and we cannot deny that. Therapists working on a team like that face long waiting lists and having to constantly say to families, "We see what your needs are, we see your child's needs and here is your service statement for 2026." What this does morally to people working in that system cannot be underestimated. People do, therefore, tend to burn out and leave. Other issues have also arisen that are not necessarily what Inclusion Ireland is advocating around. What we are hearing is at issue is the pay disparity between section 38 and section 39 organisations. People could be working on the same team and doing the same work but somebody else is being paid a different salary. Regarding retention of staff, this is obviously an issue that must be grappled with.

A review of the situation is needed and this is why we have consistently called for it. When we talk about workforce planning, sometimes I think people think we are talking just about recruitment drives. That is just one element of a comprehensive workforce planning strategy. It must look at the retention of the staff that are there, the conditions they are working in and how we can make those better for them. Organisations such as ours must take responsibility for this as well in respect of painting the picture positively of working with disabled children. There is nothing like it when people get to work on a team that is well-functioning, working in a multidisciplinary way and supporting children and their families on a journey. It is phenomenal work when it is done properly and right and when it is resourced. We must tell that story as well about it being a good place to work and an attractive job to do. We must tell more positive stories about what results can look like when it does work well. There must be a total focus on the workforce planning aspect. If this does not happen, unfortunately, people will continue to leave and not feel supported.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I thank Ms McDonagh. Turning to Dr. Roddy, we spoke earlier about how nobody wants to make this transactional or a concept about finances or value for money, but she is a health economist and in that regard, and I hate to ask the question this way, is the State getting value for money? I am referring to the return, whether services are public-provided or private-provided, throughout the country. Most committee members would say that we are inundated with people telling us about the services. According to Dr. Roddy's report, 73.8% of respondents indicated that there was at least one occasion in the previous 12 months where a child with autism needed medical care. This is an additional cost. Equally, 74% of children did not receive one or more services in the previous 12 months. I hate to reduce this issue to this kind of transactional debate, but is there a greater role for personalised budgets? Should we give control back to the parents and the clients to do what they want with the funding allocated to their children? I am aware that in time this will overburden the private system. What are Dr. Roddy's thoughts on this?

Dr. ?ine Roddy:

It is an excellent question. I cannot say I have done a study that shows there is or is not value for money. In my opinion, there is not value for money in how things are now.

One of the questions parents were asked in my study was what they would do if given a choice between an additional payment to go off and pay for services privately and an improvement in services and supports. Almost three quarters would prefer an improvement in services and support than receiving an additional payment. That does not represent every parent and I emphasise everyone has their own individual preference, but the challenge for the particular parents involved in the study was the lack of access. Maybe if you live in Dublin it is much easier to go private for something but not being able to access private therapy was a huge issue for people in country areas. Even if they have the additional payment, where do they go for it? There will always be some families that would prefer an individual payment. That is their view and they are entitled to it.

Ms Angela Locke-Reilly:

Were those parents of children or parents of adults?

Dr. ?ine Roddy:

Parents of children. It may vary at the age level. Maybe an individualised payment would be very different at an adult level in the types of supports that would be sought. It is about how can you make a drastic improvement in services and supports and yet provide them for value for money. There is not a country where you can say the autistic services are fantastic and it is the role model. That does not exist. Some countries have stronger points than others. There are a lot of different issues if there is not clear guidance about having greater individualised plans for autistic people and what is an appropriate level of services and supports. There is a lot more need for guidance and guidelines at a higher level for different professionals working with autistic people, if they are doing an assessment of needs, in order to come up with the best plan.

At different times advocacy organisations or autistic people would say a key worker is crucial. There is a huge amount of stress from not having communication between the Department of Education - and even trying to navigate within that Department - and, say, the Department of Health and different health professionals. A key worker is often expressed as something that would be crucial to help provide information supports for families. I made the point in my opening statement about how we go about doing that. What level of contact and support do they need with key workers and the resources they need? There is a lot more planning needed to be able to come along and say this programme, even if it is a pilot programme for six months a year, can show that it is value for money or not. There is a huge lack of evidence to be able to come along and say what is the best approach to take. Obviously, everyone wants everything done immediately rather than waiting for research and evidence that are going to take time and I am very conscious of that. You want to improve practice immediately but you have to be thinking long term about what is actually the best approach in addressing needs.

Pat Buckley (Cork East, Sinn Fein)
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I thank the ladies for today. I am conscious of time so I will go straight into it. In Ms McDonagh's opening statement, she referred to holding the Government to account. I would like to know how Inclusion Ireland is getting on with that. It is probably a short question but a tricky one. There was also mention of gathering better data so as to plan properly for disabled children. Each of us here has a constituency dashboard taken from the census, so that information is there already. I would like Ms McDonagh to elaborate on what kind of information Inclusion Ireland was looking to get on that. She also mentioned multi-annual funding. I wish her the best of luck with that. We have been roaring and screeching about that across the board.

It was mentioned by Dr. Roddy, as well as the representatives from Inclusion Ireland, that the mental health system has been very frustrating. In the last Dáil I was spokesperson on mental heatlh and that was one of the big bugbears. If a person had any disability or form of autism and a mental health issue, then he or she would be going to England, in the best-case scenario. It is shocking we are still talking about that in 2023.

Turning to Dr. Roddy, the big item she has is the correlation matrix of unmet service needs. I read all her notes on all the additional ones and the gaps in that are frightening. They are probably the least expensive but most valuable.

I am referring to psychotherapy, music therapy and whatever else. I could not believe the gaps in that, in this day and age, while we are talking about how to improve services. The Inclusion Ireland submission also mentions 74% of children and adolescents were waiting 12 months or more and never got a service. Talk about a lack of services. I am going through them fast, Chair, because I only have one question.

There was also mention of transparency and accountability, as well as silos. Does Dr. Roddy feel that within the system, be it the HSE, the Department of Health, the Department of Education, or all of them, there is still that archaic way of saying "we are going to protect our patch" and that they are not working together for fear of interference?

I have two more questions. Dr. Roddy mention a report. What was it again? I want to see if we can follow up on that.

Dr. ?ine Roddy:

Was it the UK national autism strategy? There has been investment of over £75 million-----

Pat Buckley (Cork East, Sinn Fein)
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No, it was a report she was waiting for. We can come back to it.

Dr. ?ine Roddy:

Does the Deputy mean the publications coming forward?

Pat Buckley (Cork East, Sinn Fein)
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Yes, something that has not been published yet. She mentioned some report.

Dr. ?ine Roddy:

Yes. It is in relation to the Parents and Children Together, PACT, study, which is a follow-on study about the cost consequences of early intervention.

Pat Buckley (Cork East, Sinn Fein)
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Yes. The final question is one I have probably had for months now. It is to do with children in school. With autism or disability, where a child has assaulted a special needs assistant, SNA, and the SNA has to be put off, there does not seem to be a one-fits-all plan with schools, be it either a special school or a public school. I just cannot get the child in. I cannot tell the mother what to do. You cannot approach the principal because it is between the families. The SNA, who is out sick, cannot be replaced. Then the transport breaks down and you have mothers, mostly mothers, ringing asking whether I have any update. It seems to be very difficult for us, even as public representatives, to even open the door for dialogue to see what the plan is for families. I ask any of our guests to touch on the stress the lack of mental health services causes for children, but also for the parents and grandparents. Are there any supports out there?

Micheál Carrigy (Fine Gael)
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Ms McDonagh might go first.

Ms Derval McDonagh:

I thank the Deputy for wishing us luck on holding people to account under the UNCRPD. It is a core part of our work and frames everything we do. We have various mechanisms for doing that. We are a member of the Disability Stakeholder Group, for example. We will be involved in co-creating the next iteration of the national disability inclusion strategy. Those are just ways of trying to influence that. However, it is huge. It is a visionary piece of work and is going to take many years for people to realise their rights fully under UNCRPD, but we are very focused on it at Inclusion Ireland. We all know that today and tomorrow the State is sitting before the UN Committee on the Rights of the Child. We at Inclusion Ireland have been very vocal in the run-up to that. Back in September at pre-committee stage, a delegation of children went to Geneva with the Ombudsman for Children and we are proud to say one of them was a child with an intellectual disability who spoke about her story and the issues facing children with disabilities.

We have been very vocal, when working in partnership with the Children's Rights Alliance, about highlighting inclusive education, seclusion and restraint training for teachers and the whole ecosystem that needs to be there to support children properly. The Deputy mentioned the particular issue facing the child, namely being expelled from school. It is a huge issue but again we are almost getting to the issue when it is at a complete crisis, breakdown stage. I do not know the ins and outs of that particular case but you can hazard a guess what needed to happen is those supports needed to be built in right from the start. The school needed training and support, it needed resources and it needed the proper buildings and infrastructure. That child needed to feel welcome there and to get all of that.

Pat Buckley (Cork East, Sinn Fein)
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I am sorry for cutting across but in fairness, the school engaged. However, it is again down to resources.

Ms Derval McDonagh:

Yes.

Pat Buckley (Cork East, Sinn Fein)
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As the school could not provide the additional resources, including even a temporary changeover SNA, that child has regressed because they have been at home and that is obviously affecting family life and the mental health of the parents and so on. You just feel like it is hopeless.

Ms Derval McDonagh:

I know.

Pat Buckley (Cork East, Sinn Fein)
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What about the optional protocol?

How does Ms McDonagh feel about that? It seems to be a big bugbear. We have been trying to push the Government to deal with it. It is grand to say that people have a right to something but without addressing the optional protocol, it is only a right on paper. Someone can be approved for a three-bedroom house but if it has not been built yet, the person does not get it. Does Ms McDonagh understand what I am saying? How can we proactively push the Government into ratifying the final bit? Would it put the Government under pressure? If there is an automatic right to a service, the Government would be caught because it would not be able to provide the service. That is the reason it is not ratifying the entire package and is leaving the optional protocol out.

Ms Derval McDonagh:

We are definitely in support of the optional protocol being ratified. A lot of our members are very much in support of that. However, as Deputy Buckley said, it must also be viewed in the bigger context of fundamentally developing services and supports for people. What we do not want is a whole other complaints mechanism, with people staying caught in such a loop unable to get the services and supports they need. We should ratify the optional protocol. Other states have done so and it is the right thing to do. There is no doubt that people need the mechanism. Sometimes the nation does need to be held to account publicly and globally, but we must focus our efforts on building better supports for people.

In response to Deputy Buckley's point about value for money and how systems work together, Ms Locke-Reilly painted a very nice picture of when integrated care works. In Inclusion Ireland, we look at the child and the family being at the centre of everything. I know that is an overused term but everything should stem from that. If a child accesses a children's disability network team, for example, he or she must have a key worker or advocate to help him or her navigate the system and bring together all the services and support he or she needs, be it mental health services, CAMHS or services in education. Whatever the child and family needs, it should be integrated and together. That is where we get value for money and better and safer quality services because the child and the family are in the middle of it. Unfortunately, that does not seem to happen. A lot is based on diagnosis and to many families, the lived reality is that they are shipped from pillar to post. They are told it is not a certain person's responsibility because they have a certain label and when they go to another place they could be told the responsibility does not lie there either because that place does not have enough of another label. Nobody integrates everything.

Pat Buckley (Cork East, Sinn Fein)
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It is a case of not getting the right ingredients for the cake.

Dr. ?ine Roddy:

Yes, and again that is integration and what we are aiming for is inclusion. It should not matter what diagnosis a person has, people should be able to access the supports that are needed from wherever that may be, whether they are mental health or additional educational supports.

Pat Buckley (Cork East, Sinn Fein)
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Dr. Roddy provided additional notes on the lack of psychotherapy, art therapy and other therapies. I encourage everybody to get a hold of those and read them. They are frightening. Dr. Roddy covered most of it.

In terms of silos, how do we mentally and physically break down the attitude of Departments? All the witnesses have referred to the issue. We could call it the cross-departmental box of frogs. Half of the education board is working with the witnesses and the other half is not. Some CHOs do not work the same way as the Department. How do we systematically put down a marker that these are the rules from here onwards and this is the way it is going to work and completely change everything?

Dr. ?ine Roddy:

Something struck me when Deputy Buckley asked about how to address the silos. I do not think the issue has come up so I will point it out as it is part of the root problem. There is an ongoing debate in the disability and autistic community on whether it is just about acceptance or if it is about all-intensive services. There is a lot lost in that argument as there is a place in between. Awareness and acceptance are extremely important, and then others with higher needs require more intensive services and supports. It is not a case of one or the other. That is the scapegoat used by many Departments because it is much cheaper and easier to say we will have a bit of awareness. That must be addressed. Autism awareness and acceptance is massive. It greatly influences autistic people's experiences and the level of trauma they experience, so it is not to be undermined because it is extremely important. A lot more is needed, however.

For example, the mental health of parents and grandparents was mentioned. There are many factors involved in addressing that. Over the years, when they have been trying to push forward for a national autism strategy and a Bill and everything, the option and solution has been to invest a little bit in awareness and that is it.

Micheál Carrigy (Fine Gael)
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That concludes all members, bar myself. I will leave myself until the end of round two. Other Oireachtas Members, Deputy Conway-Walsh and Deputy Ó Murchú, have asked to speak at this meeting and I will give them five minutes each.

Rose Conway-Walsh (Mayo, Sinn Fein)
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Go raibh maith agat to Deputy Ó Murchú for conceding. I was not here for the whole duration of the meeting, but I was listening from the office. I thank our guests for the work that they are doing and the important contributions that they made today and those they continue to make.

The reason I am here is to ask the guests’ advice in particular around the children who are falling through the net. I will give an example of a 13-year-old boy from north Mayo who has Down's syndrome, is autistic and has some sensory issues as well. He is locked of a school place, so does not have one. He was going very well up until lockdown and then was impacted by that. I want to ask the guests about this. He was then put into a service where there were profound disabilities - where he was the only verbal person in it and the only one who could walk as well. He started to rapidly deteriorate from that. His parents have tried to get him into a local service. It does not seem to be an issue of resources, in the sense that the special education needs organiser, SENO, in fairness, said that whatever resources are needed can be supplied for this child to uphold his right to an education. However, it is said that not all of the assessments are being done - I refer to the physiotherapy, the speech therapy, the occupation therapy and the other reports. All of the boxes are not able to be ticked and meanwhile we have a 13-year-old child who is denied an education. I want to ask the advice of the witnesses on how we can tackle that and make sure that his rights are upheld.

Some children are less equal to others. If he was a child who was not autistic, did not have Down's syndrome and was 13 years of age, he would be in school and a place would be made for him in school. Who is accountable in that? Nobody wants to know. Who is accountable and who is responsible? What is the witnesses’ advice on that? I appreciate the comments on Safari in Mayo and the work is being done there. It is very important to get the positive feedback from that. That is the main reason I am here today.

Ms Derval McDonagh:

I thank the Deputy for raising that and that specific example of what is happening. Unfortunately, that young boy is not alone in his experience. I am sure that is being replicated across the country.

The Deputy asked what our advice is around that. There is the short-term advice about how you help and support a family, which we do every day of the week when people phone us and ask us for signposting, information, how to write letters to schools, how to phrase things, how to influence the decision-makers and all of that. We support families with that every day. There is also the piece about just building a better, more inclusive model of education. That is a long journey and a long road. Right now, that is no use to that boy who needs our help and support. We have to hope for a future where there are fewer of those children and what they experience and we build a better, more comprehensive and inclusive education model.

There is a leadership piece here as well. We have called for this. We need to see a vision from the highest levels of Government – ministerial level – around that model of inclusive education. We need to hear stories about when it works well for children. We need to encourage schools to come on that journey and schools need to trust that they will get the resources to provide the supports as well.

I am curious on that specific example and I know we cannot go into too much detail here publicly.

I am happy to take that offline as well. What is going on if the resources are there and why, if there is a school available for the child, is that not coming together? The Deputy mentioned therapeutic interventions. That should not necessarily stop a child getting a place in school just because he or she does not have a physio report. I am curious about the detail around it and maybe we can talk about that in more detail later. We need to see a bigger vision around inclusive education and we need to see it resourced properly so that other children do not fall through the cracks like that. There are multiple children like that across the country on reduced school times who have been expelled, etc. Some of that is a resource issue and some a values, cultural and attitudinal issue.

Rose Conway-Walsh (Mayo, Sinn Fein)
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What are Dr. Roddy's thoughts on that?

Dr. ?ine Roddy:

I agree with Ms McDonagh who summed everything up excellently. Often, in such situations, it is through the parents getting media attention and, eventually, when it is seen as being really dramatic, something may be done. It falls back on advocacy organisations rather than someone accountable in the situation to say, "You are not actually doing your job here."

Rose Conway-Walsh (Mayo, Sinn Fein)
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It is awful that people have to sometimes depend on the media to highlight these cases. None of us would want our families exposed to the media and everything else that goes with it. Why should children-----

Ms Angela Locke-Reilly:

I do not think anybody wants his or her child to go to a school that has been forced to take the child. That is huge thing. You do not want to fight for the place because you think "I do not want my child to be in that school if they don't want him anyway." Some parents have started to fight until the child is accepted into the school and then they do not even take the place. They just wanted to prove the point that their child had a right to a place. Why would you force a school to take your child? That makes you feel horrendous.

Rose Conway-Walsh (Mayo, Sinn Fein)
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Exactly, but what if people in rural Ireland and that is the only choice they have? They do not have a choice.

Ms Angela Locke-Reilly:

Many children end up having to travel huge distances. Our survey showed some of them travelling more than an hour, which is just not acceptable either. Kids end up taking places that are entirely inappropriate for them because it is the only thing they can do. There is nothing else there.

Ms Derval McDonagh:

What I am hearing is that there are layers of trauma for that child. Covid and the impact it had on many disabled children being out of the education system, and all of that, was mentioned. There are layers of trauma and a specific approach is needed in welcoming that child back into an education environment. Skilled staff who are highly trained and sensitive to that are needed. It comes back to the basic foundations for inclusive education, such as leadership, vision and the welcoming open door, as well as the resources and training, and the knowledge and know-how to meet those children where they are at, to recognise the trauma they have experienced and to support them in rights-compliant ways to access their right to education. That is a whole new way of supporting children in education and some schools are doing an amazing job on that. We do hear all the negative stories, of course, but some schools are those welcoming, inclusive environments that get trauma-informed practices and supports, understand neuro-affirmative approaches. Some schools are struggling with that and we need to figure that out and invest in those schools, invest in the leadership in those schools, and invest in the resources that are so badly needed for those children.

Rose Conway-Walsh (Mayo, Sinn Fein)
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We must make sure that for children who are at home and cannot access education, somebody is responsible or some group of people is accountable because when I put this and many other cases to the Minister, the response will be that millions are being allocated. Yet, the millions do not get to the child who is at home, regressing. We all know how important intervention is. As well as that, any of us have a right to education.

Ms Angela Locke-Reilly:

I was actually shocked when I learned about that if you homeschool your child. I started to talk to parents who had taken the option of homeschooling their child because there was no appropriate place available. They were not given extra resources to teach their child at home. They were not offered training. Nothing was made available for them and that was such a shock to me. At first that I thought I had heard it wrong.

Rose Conway-Walsh (Mayo, Sinn Fein)
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Those resources must be there.

I thank the witnesses and I may speak to them outside.

Micheál Carrigy (Fine Gael)
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I do not want to answer questions on behalf of the witnesses but ultimately it is for the Department with responsibility for special education. That is the line Department with responsibility to ensure every child has a public school place. That is where responsibility ultimately lies.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I thank the witnesses for coming before the committee. I had to leave to do an interview and I apologise if I repeat some of what has been said. To get into generalities, we are speaking about supports and a framework for disabled children and autistic children and adults to provide them with what they need to get through this world. We are not in any way delivering on this. It has been said by many people that it is all well and good to say there should not be silos but there are. On one level parents do not particularly care once they find a solution to their problem. The witnesses deal with parents of autistic children who, for example, cannot get a strategy, way or means to deal with an anxiety issue. They then go to CAMHS and there is a game of ping-pong over and back in which nobody takes responsibility. Therein lies the problem.

What we are dealing with across the board is that generally this works when there are outlier parents, outlier educationalists and outlier people who work in healthcare. There are plenty of them, thank God, but there are not enough of them. We accept that people are dealing with services that do not even have the positions filled. There are issues that even if rectified today would take four or five years to see throughput to workforce planning. There are also such issues from the past. People are told they do not need an assessment of need but are then told that they do need one from the point of view of school resources. We need all of the services to speak together and review of what is needed.

With regard to adult services, even Ministers will say that services fall off the edge of the cliff. We need research, we need best practice and we need to fill the positions that are vacant at present. However, the plan we are going with will not necessarily deliver. We will never be able to deliver everything for every child but there needs to be some element of bespoke service. There needs to be a means and an attempt to deliver a service for them and provide them with an individual framework. The committee has seen some very good practice, such as the work of the Trinity Centre on disabilities on facilitating people into employment and changing the nature of how employers see this work. This will not be suitable for everybody but it is about how we put everything together, from the research to something that works.

Even if we fill all of the positions on the CDNTs and could access more services in the education system it would still not work completely because we would not have crossover. We will always have a game of ping-pong until we change things. Let us see whether somebody puts a 100% spectacular framework in front of me on how we would deliver this. I would be delighted. The witnesses have two minutes.

Ms Angela Locke-Reilly:

The HSE produced beautiful policy on change management a couple of years ago. It has a very good framework but it does not seem to translate or to be implemented properly.

Ruairi Ó Murchú (Louth, Sinn Fein)
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What does it look like or what should it look like?

Ms Angela Locke-Reilly:

It is about getting rid of silos and having integrated care. Integrated care is the key message that always comes through. It is about working together. There are examples of very good collaborative practices. I spoke about doing research into the local steering groups for housing last year. Those that worked did so very well. They had great buy-in and they met regularly. They included many people in senior positions from approved housing bodies, disability service providers, the Housing Agency and local authorities. Importantly, those that seemed to work very well were those that had great representation of disabled people on the boards. It seemed that great effort and work was being put in.

You could see how that correlates with the numbers. Things seem to be going better in their areas than in any of the other areas. When they worked they worked really well. There are examples out there of really good collaboration going on but it is not across the board and is inconsistent.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It probably needs to be agile in order that it can change. I get the point being made in regard to input from the people who are living these lives and are impacted by this. When we talk about housing, we have all dealt with people who are in nursing homes and should not be. You are also dealing with the question of whether a person falls into disability services or community services because someone has to make a determination on whether a person has high needs, medium needs or whatever. It does not necessarily fit the person, so you go back to the county council to look for a house for someone who may need extra supports, which might not be huge. What are you going to do, wait until they fall into the older person category in order to get home care? None of it works. I have thrown far too much at Ms McDonagh.

Ms Derval McDonagh:

The new housing strategy for disabled people is supposed to focus on that very issue, which is that integrated piece across Departments. Our members tell us, and what people experience every day of the week, is that a house is absolutely useless unless you have the supports to live there. When we talk about supports it may be personal assistant hours or intensive supports. Some people just need a small bit of support to live independently while others need around-the-clock nursing support.

Ruairi Ó Murchú (Louth, Sinn Fein)
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People may technically get that but will not get that small bit of support.

Ms Derval McDonagh:

Yes, housing and health and social care need to communicate together across Departments in order that housing and supports come into play at the same time. Again it is back to the fact that fundamentally what we need are integrated systems and models. Right now they are separate. The new housing strategy for disabled people is supposed to uncover some of that and do that groundwork so that there is better integration in housing.

Micheál Carrigy (Fine Gael)
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That just leaves me.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I would have taken another hour.

Micheál Carrigy (Fine Gael)
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The Deputy takes liberties. There are a couple of comments on the opening statement from Dr. Roddy. I am a former student of the old Sligo RTC which I attended many years ago. The conclusion that society can only benefit both socially and economically by valuing autistic individuals and their families and allowing them the opportunity to reach their true potential and participate in society is the core of where we all want to get to. I am delighted that a student of Atlantic Technological University, ATU, sat in the very chair there about six weeks ago; I refer to Fiacre Ryan who has started a course in ATU. That goes to show the amount of work the ATU has been doing first of all but also that there is a place there for Fiacre to express his abilities and show what he can do. There is an issue in general across the universities. I was on the Technological University of the Shannon, TUS, Athlone campus last week to meet the staff there from both the Limerick and Athlone campuses and see the work they have been doing with the funding that has been provided by the Department of Further and Higher Eduction, Research, Innovation and Science such as the quiet spaces, the support for students. However, more is needed. I am sure Dr. Roddy would say the same about ATU. We need more funding to put in place those supports for autistic students or students with a disability but also to expand on supports for those students to find employment afterwards. Deputy Ó Murchú or Deputy Buckley mentioned Trinity College Dublin, TCD. We had Dr. Michael Shevlin and Mr. Hugo MacNeill here about a programme in TCD where they have 40 companies providing employment for those students. That is something I would love to see expanded across all the universities and TUs. I would like to have that sort of programme throughout the country and the funding for staff and people within the universities to be able to support that programme. That needs to be highlighted. We might look at that with the technological universities and what funding is needed going forward.

There seems to be an increase in the number of students with autism yet the funding appears to be going in the other direction. If we are to put those supports in place, we need to address that.

There is a need for a co-ordinated plan to address the needs across all sectors of society. It is to be hoped that the committee's proposals will cover all those areas and not just specifically education and health. We are meeting people from various sectors to try to put forward positive proposals that will make whole-of-life changes for families. The core of those proposals will be based on lived experience, meeting families, and talking to families and groups that represent people. We are in the middle of organising a family day in the Seanad, hopefully to take place in late February, when we will allow more of an opportunity for families throughout the country to come to Leinster House to put forward their views on what changes they want to see made. That will be at the core of this committee's proposals.

Ms McDonagh mentioned non-speaking autistic persons in particular. I mentioned Fiacre Ryan earlier. The RPM method was used to allow him to communicate. All of us found it fantastic to see how someone who did not have a way of communicating was able to use this method, which, for some reason, is not being supported by the Department with responsibility for special education or, indeed, the union that represents speech and language therapists, despite it being shown to work. What are the representatives' views on that method?

The witnesses mentioned changing the EPSEN Act to an inclusive education Act. That would be very positive because it really sets out what it is. If asked, the vast majority of people do not know what the EPSEN Act is. An "inclusive education Act" is self-explanatory. That would be something positive that the committee could look at putting forward. There is nothing special about access; it is a right. That is at the core of it. That is in the proclamation people read on the doorway when they come to Leinster House. It states that we must cherish "all the children of the nation equally". That was in 1916. Are we doing that in 2023? I do not think we are but that is where we need to get to, through putting those supports in place.

On teacher training and SNAs, a PhD is being written on having a template for all special schools, and schools throughout the country, for special classes and how they are administered. The reality is they are not all being done the same. It all depends on how the principal works with such classes. We have heard stories of teachers coming straight out of teacher training college with absolutely no experience in special education being put into a newly opened special class. That is not acceptable. One of the recommendations in our report with regard to the summer programme is that all teachers in teacher training should take a module in special education during their course and must work in a summer programme prior to qualifying. Teachers should all have the experience of working with children with needs in order that if they go into the classroom, they at least have that experience so we do not have that situation happening again.

A proposal with regard to upskilling and training of SNAs was put to me by people in a number of schools I visited during the Christmas break. What are the representatives' views on more courses being put on for SNAs? We met people from the Middletown Centre for Autism where there is European-wide best practice. Maybe we should ask them to put on further courses for our SNAs to upskill them. That course time could be taken out of the hours outlined in the Croke Park agreement to allow SNAs to take those courses.

Another issue that was brought to my attention relates to teachers of special classes. Similar to mainstream teachers, there is no cover for early professional development, EPD, training days or a family emergency for which they have to take time off. The class has to be covered by another teacher.

Such cover has worked within the mainstream but has proved to be an issue with special classes. If that happens with the main teacher of a special class, there should be cover for a full teacher for that day. That is something that needs to be looked at.

What are the representatives' views on the rapid prompting method? It was spoken about on a number of occasions at meetings of this committee. I have hit on a lot of points. I am not asking any specific questions but for the witnesses' views on the points I made.

Ms Derval McDonagh:

On the rapid prompting method, Inclusion Ireland ran a conference in October looking at alternative and augmentative communication for people with intellectual disabilities and disabled people in general. It is a huge issue. Access to a functioning communication method is the way people access all their other rights, including education, and the world, and how they have a good life. We are wholeheartedly behind developing better pathways for children and adults to access the right to a communication method.

There seems to be anecdotal evidence that some children and families find RPM, as a methodology, incredibly useful. Inclusion Ireland does not tend to recommend a particular approach. We are more focused on the investment in access to all methodologies around alternative and augmentative communication. As long as it is human-rights based, it meets the child and adult where they are at, it serves their needs and purposes, and is directed by them, we are in support of that approach. However, we do not tend to recommend a particular methodology, especially when there is not yet a full evidence base behind it, although that might change over time. We are more interested in the systemic issues facing people at present who need a system to communicate and do not have access to it.

In our report based on our conference last October, we raised a number of issues, to go back to the points members made, around the integration piece. We need better integration across health and education. There needs to be better resources for access to AAC equipment in schools and homes. We suggested having banks and libraries of available equipment for children. There are therapists with know-how who can implement this immediately but, sometimes, there is no bank of equipment where they can readily trial things. Some of these pieces of equipment are incredibly expensive. Families cannot afford to buy one just to try it. There needs to be an investment in that kind of trialling and testing.

Our attitudes around AAC and people who are non-speaking needs to dramatically move on. Somebody pointed out that sometimes non-speaking seems to suggest non-thinking or non-communicating. We all know that is absolutely not true. We need to take our obligations seriously in giving people proper, robust access to AAC. We shared our AAC report with the committee previously, which has some key recommendations that might be useful for it to take on board. That is one element.

Micheál Carrigy (Fine Gael)
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Fiacre Ryan made a comment that just because he could not speak, he is no less intelligent. That is a mindset society in general needs to change. Does Dr. Roddy wish to come in on any of those points? I did not mention the issue of clinical settings versus educational settings, which was referenced. Trials of the school inclusion model were done in CHO 7. The results have not been officially announced but, from what we have heard, they are positive. What is Dr. Roddy's view on the method of rolling out speech and language and OT in school settings versus clinical settings?

Dr. ?ine Roddy:

The school setting is the preferred method among parents. It is less disruptive to family life in terms of having to take time off work to bring children for appointments. In addition, a number of parents reported very short notice for when they would get an appointment. A school setting would run more smoothly in respect of their family life.

On SNAs, the Chair mentioned training courses at the Middletown Centre for Autism, but if this is going to be a service in the school, what is the scenario for the number of services? Sometimes it is a case of somebody doing great if they get six speech and language sessions. To refer back to the higher level of what is best practice, an individualised plan for a student is currently based on his or her assessment of needs, but there should be a greater checking in on what is needed rather than just basing the delivery method on what we can afford.

Parents seem to prefer to have that at the school level rather than having to go into a clinical setting.

Micheál Carrigy (Fine Gael)
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Ms McDonagh made a comment about the Disability Act. What is coming across from the large number of meetings we have had on this whole issue is the right for an assessment of needs but not having a right for a service. I believe that needs to change. Something like seven to ten High Court cases a week are being taken to access an assessment of needs and children who need them are not getting services. The committee needs to tackle that.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I add my voice to what the Chair said about Fiacre Ryan and RPM. It was one of the most impactful sessions I have had in any committee. We need to follow up on RPM and the general idea of those who are non-verbal but who are thinking. We talked about silos earlier. Someone could be left in a personalised silo by not providing them with that.

Regarding what Dr. Roddy said about whatever works and has best practice, if in the short term we do not have all the services we need to provide, we need to provide whatever we can with a plan to get to somewhere better that can deliver. I probably should have emphasised it earlier. It is similar to the point Ms Locke-Reilly made earlier. Ms Lavin outlined a short number of difficulties that she has come across in her life which can be dealt with. We may be talking about funds for housing, how someone gets to that point or even the simplicity of using public transport including buses. There is definitely a need for more interaction. We should be achieving those easy wins straightaway because they do not involve major cost. I should have said that earlier.

Micheál Carrigy (Fine Gael)
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I sincerely thank all the witnesses, Ms McDonagh, Ms Lavin, Ms Locke-Reilly and Dr. Roddy, for coming. We have had a very wide-ranging discussion. The witness statements and the answers they have given will be core to many of the recommendations we will be making. That is not jumping ahead and saying what they will be. It has been extremely beneficial for the committee to hear their views.

Again, I thank the witnesses for all the work they have done on behalf of autistic people and their families. It is very important and is greatly appreciated by the families and parents. As a parent, I appreciate all the work they do. I look forward to working with them and I am sure we will make a difference for the lives of the children and families involved.

We normally have any other matters on the agenda but I think we are going to conclude at this point today. We will now adjourn until 11 a.m. on Tuesday, 31 January when we will meet representatives of the Middletown Centre for Autism and Science Foundation Ireland.