Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Deputy Coveney and Senator Seery Kearney. Senator Clonan is also speaking in the Seanad at the moment.

The purpose of today's meeting is to discuss children with disabilities - UNCRPD Article 7. On behalf of the committee I welcome from the Independent Living Movement Ireland, Ms Paula Soraghan, community development worker and youth collective facilitator; and from AsIAm, Mr. Adam Harris, chief executive officer, and Ms Emily Mullock, community advocate.

Before we begin, and I am nearly able to do this off by heart at this stage, all witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity by name or in such a way as to make him or her identifiable or otherwise engage in speech that might be regarded as damaging to the name of a person or entity. Therefore, if their statements are potentially defamatory in relation to identifiable persons or entities, they will be directed to discontinue their remarks and it is imperative that they do so.

Members are reminded of the same long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable.

I also remind members of the constitutional requirement that members must be physically present within the confines of the Leinster House complex to participate in public meetings. If members are going to speak remotely, I ask them to indicate that they are within the grounds of Leinster House.

Without further ado, I call Ms Soraghan to make her contribution.

Ms Paula Soraghan:

I thank the Cathaoirleach. The ILMI is a cross-impairment national disabled person’s organisation, DPO. Our vision is an Ireland where disabled persons have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals. Central to the way we work is to ensure that policy decisions impacting the lives of disabled people must be directly informed by those whose lives are directly affected. Our philosophy can be summed up as: "Nothing about us without us!" and "Rights Not Charity".

ILMI as a grassroots DPO has many disabled young people in its membership. As a DPO we have a youth collective space for disabled young people aged 16 to 30. This is the only online youth collective for young disabled people through a DPO in Ireland through a cross-impairment basis and a social model approach. The youth collective allows young disabled people to connect collectively with like-minded peers. It is a space to discuss issues that affect young disabled people and how we can work to remove disabling barriers. Education and inclusion in the community have been key topics that we have discussed over the last few years.

In our collective analysis in today’s presentation, we want to focus on: expectations in education for young disabled people; supports we need to participate in society as equals; and supporting and resourcing peer spaces for young disabled people to connect with each other. While there have been positive increases in the number of disabled people in further education, Ireland needs to move from equality of access towards equality of participation and equality of outcomes for disabled students in education. Despite progress, there still exists an overly medical approach to disabled people’s lives in education. This approach will unconsciously place limitations on the participation of disabled students and limit their expectations in terms of future employment.

It is vital that the mainstream education system empowers disabled people so that we are confident to demand the same choice and control over our lives as our non-disabled peers. Disabled children who have the supports to participate in schools will have increased expectations that they can and will achieve their life goals, in education, employment and in life. We need to be honest about the expectations set out for us and for future generations of young disabled people in the UNCRPD. We need to be clear that education for us to participate in society does mean investment in mainstream, inclusive education. Special schools do not have their expectations for disabled people. We need to remove the term "special" from education and the barriers caused by the term "special needs". The language of "special education" is patronising. When anyone needs support, regardless of what that is, let us call it support. "Special education" and "special needs" are terms offensive to us and need to be consigned to the history books.

We need to be honest and acknowledge that we have all grown up in a system that either implicitly or explicitly is based on the medical model of disability. This is reflected in how we are taught, how our teachers are trained and in the education environments we create. The medical model at its core denies disabled students our potential and limits expectations for us, and, indeed, we begin to internalise those limited expectations. It looks at the impairment and explicitly or implicitly assumes what disabled people will not be able to achieve. We as disabled students internalise those beliefs until we begin to embed the social model of disability in our teacher training, our curriculum and in the values. We need a commitment from the Department of Education to work with DPOs to develop a vision for social model-led education at all levels.

Teachers, in all roles, as principals, classroom teachers, learning support staff and guidance staff, all play a huge role in realising the potential of all children. They need to be equipped to set high expectations for achievement for disabled children through mandatory participation in disability equality training in teacher training colleges and in-service CPD training. Career guidance is vital for everyone to set goals about their future lives. Guidance for disabled students also needs to be about expectations. Guidance counsellors need to motivate disabled people. Guidance needs to look at what are our strengths, what suits us and what supports we will need to achieve that. Career guidance needs to be a multipronged approach that links the aspirations of disabled students with the supports they need to achieve their goals and links with disabled people through local DPOs to build confidence and shift expectations.

Often our experience in mainstream education, conversations relating to our participation focuses on "reducing risk" and "health and safety", which creates a culture for schools and for children of being risk averse. This creates a sense of difference and is all about protection as opposed to participation in life and learning for disabled children with their peers. We need to talk about the autonomy of disabled people, including disabled children. We need to stop the idea that puts cotton wool around us and change how society interacts with us. We need to develop and resource in-school supports that are about not doing for but supporting the inclusion of disabled children and fostering independence within disabled children.

Existing roles such as SNAs will be phased out in terms of how they are phrased. For parents, schools and disabled children to begin a journey of awareness of the possibilities of independent living, these roles should move towards synchronising with the supports many of us will need as adults and become personal assistant services. School PAs should be informed by guidance for PAs at a national level to ensure continuity of service, that empowerment and independence are built into school and out-of-school supports from an early age.

The supports some of us have as disabled children and young disabled adults are the same supports we will require in out-of-school settings. Part of any young person’s journey in life is being with their peers, socially interacting, connecting and exploring boundaries. That is natural. However, without person-centred supports, many of us are unable to have that freedom to participate in youth clubs and in social activities. Often, our non-disabled peers get to experience freedom as they age without parental support or supervision. However, without supports at our discretion such as personal assistants, many of us are forced to rely on our parents to provide that support.

Supporting us from an early age to find our voice, to connect, to be part of a peer group and to recognise that having support and directing support to have choice and control in our lives needs to be done from an early age. It gives us self-belief, confidence in who we are and a chance to do what non-disabled young adults do, namely, to gradually explore independence and choice in life. Ensuring this for us as young disabled people inside and outside of education settings is vital for our self-confidence, our self-belief and for our expectations for the future it also benefits our non-disabled friends. Inclusion becomes a reality. We normalise it. Our friends will know what inclusion is and know where is accessible, and as they grow, they, with us, will shape the type of society we have and Ireland into the future. Equally, growing up with and alongside disabled friends will mean we will always demand inclusion, access and participation because that is what we will all grow up taking for granted.

We are your sons, your daughters, your brothers and sisters, your cousins, aunts, uncles, friends and colleagues. We are part of our communities and we need to be supported to have our right to participate in our local communities as equals and for that to happen automatically and without delay. When we are locked away in segregated education, segregated day centres and segregated in residential settings, we become dehumanised, forgotten about and ignored. Real inclusion will ensure that our participation is valued, resourced, supported and, hopefully, in the very near future, we will be visible in our communities to the extent that it is very much the norm.

Young disabled people, regardless of age, class, ethnicity, gender or sexual identity, have a collective shared lived experience, but we need to talk to other young disabled people and disabled adults to share how it feels to live in a disabling society. We need to realise that many of the obstacles we face, not just physical barriers but attitudes and systems, are those based on disabling systems and are not about our individual impairments. That realisation that "it isn’t just me" is a profoundly transformative experience for any young disabled person.

Finding a collective space to explore that, however, is not easy, or even realising that what we are experiencing needs to be explored with other disabled people. Internalised oppression leads us to lack belief, but our lack of belief is based on what many of us were told as disabled children right through our lives. We are told from birth by medical professionals what we cannot do physically or intellectually. It is drilled into us in medical terms our incapacities or functional limitations and, over time, that feeds into our psyche.

We live in a society that does not believe in us. We are told and shown that it is a society for and by non-disabled people. For many disabled people, internalised ableism is something that is always there that creates internalised barriers for so many disabled people, including in accessing employment. For some, it is about writing yourself off from even applying for jobs despite having the qualifications because you do not believe in yourself and constantly tell yourself “I cannot do this”. We as disabled people see so few of us in mainstream employment, and when we cannot see it, we cannot be it. It is about having skills but not valuing them and assuming that your qualifications are not enough.

Internalised oppression means that many of us who go through the mainstream or acquire our impairments do not want to be with other disabled people. It reminds us of our impairments. This has an impact on how we work collectively. We have to find spaces to collectively name this, share what it means to be us, how it impacts on us and to acknowledge that it is not our creation. The system is broken and it is not allowing us to live self-determined lives. When we come together collectively, we name that it is not our impairments but systems of oppression. We realise the way things are do not need to be and systems can be taken apart and redesigned.

This is why disabled persons' organisations are so important. That is what the ILMI Youth Collective has begun to achieve. However, DPOs are massively under-resourced. That is a fact. The emergence of DPOs in Ireland is a relatively recent phenomenon. Our significance is recognised and valued not only by disabled people but continually by members of this committee. Our invitation to speak here today is a further example of that.

I am fortunate as a disabled activist to be employed full-time as a community development worker through the Department of Rural and Community Development's pilot community development programme. I work with my colleagues Nicola Meacle and Colm Whooley on the VOICE project to support local DPO development in the south east of the country. I am passionate about creating spaces for younger ILMI members, and like my former colleagues, I am happy to provide that support outside of my working hours. The reality is, however, that is not enough for what young disabled people really deserve. At a minimum, we need to look at a full-time youth worker to nurture that space, to help it grow, and to reach out and bring even more young disabled people into the work of ILMI.

If this committee really values the voices of young disabled adults, and we genuinely believe it does, then there are concrete actions it can take to ensure that voice is heard, not only today but from today onwards.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Soraghan for her contributions. I call Ms Mullock to make her contribution on behalf of AsIAm.

Ms Emily Mullock:

I am a member of AsIAm’s youth leadership team, an amazing group run by AsIAm and led by Adam Harris and Niamh Mellerick. This group consists of an incredible team of young people who are passionate about advocacy and inclusion work. We bring the voices of young autistic people to the charity and have gained many skills and experiences. We have grown a lot as people as part of YLT.

Autistic people face many barriers when accessing the community. Accessing schools is one of these barriers. Schools are somewhere where so much beneficial change can be made and quickly. In my personal experience, I am exceptionally grateful to have two wonderful parents who have done nothing but support me when it came to school. They did everything they could to make it so that I was able to attend. I have always struggled with and disliked school from day one. This is, unfortunately, the experience for many autistic students. When I first started secondary school, the combination of the overwhelming new environment and no accommodations led me to missing significant periods of time at school. This ended up being a full year, which meant I went back and restarted first year on a reduced timetable of one class a day, which was all I was able for at the time. Without the support and advocacy from my amazing parents, the school would have never come to me and tried to figure out how to make the environment and my education accessible. Much of this is probably because the school simply did not know how and there were not enough resources in place.

Many autistic young people do not currently have access to an adequate school place, which makes them feel isolated from the community. Allowing for more resources to be put in place, such as SNAs and physical resources like sensory and quiet rooms, as well as making the building a more sensory-friendly environment would make such a difference. Educating school staff is also critical. There is ongoing education around autism in schools and this needs to continue to become more of a priority as education leads to understanding and willingness to change. This also relates to students. Educating all students on autism, neurodiversity, what that might look like and how to support your peers makes a massive difference.

When it comes to making access to healthcare, especially mental health services, more accessible, there are many barriers that could be removed which would greatly benefit young autistic people. Long waiting lists, the cost of private services, a lack of understanding of autism, healthcare providers' reluctance to listen to individual needs and the diverse needs of the autistic experience are all barriers to autistic people being afforded the same chance at healthcare services. Long waiting lists stop individuals from gaining vital and life-changing diagnoses which would allow them to gain accommodations that would greatly improve their quality of life. A lack of understanding around autism leads to all mental health issues being dismissed, as autism is used as grounds for not providing further assessment, diagnosis and therapies. This leads to autistic people and their family members feeling lost and their experiences feel insignificant.

This can be changed if practitioners and the medical field as a whole are continually educated on the diverse and nuanced needs of the autistic community, how common co-occurring conditions are and how important it is to listen to all autistic people and their family members' experiences. Of course, it is not that simple but I believe it should be a priority. Young people have a voice and a right to be heard, especially when it comes to their health. When it comes to socialising and feeling a sense of belonging, groups like AsIAm’s youth leadership team are amazing and crucial because they give autistic young people the chance to feel a sense of belonging. I had never felt more connected with a group of peers before meeting my fellow YLT members. I hope all autistic young people get the chance to feel completely comfortable being their true authentic and autistic selves. That is why the social groups that AsIAm run for all ages need to continue and for new groups to continue being set up all around the country. Even though essential services like healthcare are vital, autistic people want more than these services. We want a social life, to have fun and to feel included in the community. All any autistic person or family member asks for is the same chance as their peers, the same chance to obtain an education, access healthcare and services, socialise and feel a sense of belonging with those around them, being truly accepted as we are.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Mullock for her contribution. We will have Mr. Adam Harris now.

Mr. Adam Harris:

I thank the committee for the invitation to speak at today’s meeting. We warmly welcome the approach the committee has adopted, in line with Article 7 of the CRPD that it is exploring today, in inviting not just representative groups to appear before it but also to ensure it hears directly from autistic children and young people themselves. Emily has highlighted far better than I or any adult could the barriers she and other autistic young people face based on her own experiences and advocacy. We are so proud of Emily and all the members of our youth leadership team who inform our work and advocacy every day. I congratulate Emily on her fantastic remarks here today.

As Ireland’s autism charity, we can attest to the systemic barriers autistic children face in accessing their rights on a parity with other young people. It is clear, whether we talk about autism- or disability-specific public services or broader Irish society, our young people do not get timely access to support or parity of access to public services. What is more, the voice of autistic young people is not only embedded at the core of discourse on matters affecting our community, but it is too often absent in its entirety. I look forward to having the opportunity to explore the wide range of issues this encompasses, from education to therapeutic supports, when we come to questions. In the limited time that is available, however, I would like to highlight a number of specific issues.

The first is timely access to support. Autistic children continue to face wholly unacceptable barriers to accessing both autism assessments and therapeutic supports. Our Same Chance Report, published in April 2024, found that a majority of respondents had to access their diagnosis privately. Only 31% were accessing support from their local CDNT team, with 60% of those on waiting lists to access support and of whom 37% had waited for longer than four years. That is why we are calling for a stakeholder-led review of progressing disability services, which clearly is not working for our community. The current terms of reference for the review are far too narrow. In addition, as we approach the end of this Oireachtas term, we are calling for a review of the Disability Act in full in the lifetime of the next Oireachtas.

Our autism information line recently supported its 10,000th caller since November 2021. We have circulated to all members a breakdown of the data on the issues we are contacted about. A total of 1,548 calls have related to accessing supports for the child and family and 1,244 relate to challenges or barriers in day-to-day life for children. This shows the scale of challenges autistic children are facing across Ireland, with terms such as “Sorry, I can’t help”, “No, there is a waiting list for that”, and “fight” and “battle” all to commonly feature in the stories we hear.

Of course, access to support goes beyond disability services and we remain deeply concerned at the barriers autistic young people face in accessing mental health services, where too often they experience structural discrimination to accessing such support, despite being statistically more likely to require it.This is before we talk about the inexplicable link between autism and poverty. We regret that that has still not been addressed in the current budget cycle.

In terms of inclusive education, this September we yet again saw children without access to the appropriate school places which they need and are entitled to in their local community. As we meet today, far too many children remain without a school place. This year’s Same Chance Report found one in four families did not feel their child had a school place that met their needs.

Inclusive education goes beyond access, however, and again is often the first in a series of struggles for children and their families. We need a sea change in attitude from a grace and favour approach to a rights-based approach to supports in school. Even more critically, we need to see a culture shift. Last week we published independent research funded by the Irish Human Rights and Equality Commission which conducted a rights-based analysis of codes of behaviour in Irish schools as they are experienced by autistic students. Of 40 randomly selected codes reviewed, none were found to be rights-compliant. Many contained ableist language and failed to balance rights or prioritise the best interests of the child. This is deeply concerning when we disproportionately see autistic children punished, secluded, placed on reduced timetables, suspended or expelled within our education system.

I note we continue to await the publication of guidelines on the use of seclusion and restraint in our classrooms, promised since 2018. Autistic children in our education system are less protected from the use of restraint than prisoners. This must change and we must see guidelines which are rights-based, child-centred and robust.

Emily has spoken powerfully of her experiences in the AsIAm youth leadership team. It is the right of autistic young people to understand their identity, to feel their neurotype is valued and valid in Irish life, and to have opportunities to explore their identity and develop self-advocacy skills. These opportunities are far too limited, particularly at a time in which the very real value of neuro-affirmative diagnosis is undervalued and challenged by officialdom. Every autistic child must have the chance to be an advocate in their own lives and, if they wish, for their peers and community. Only by investing in this area do we safeguard the rights of autistic people into the future

At the heart of Article 7 is the right to have your voice heard, perhaps the most fundamental of all rights. For many in our community, the right to access timely AAC programmes to support autistic young people to communicate through augmentative and alternative means is far too limited. Every child must be supported to access this support as and when they need it, not just in terms of devices or technology but also in terms of training and support for the child, family and professional supporters. AsIAm is proud to be piloting a programme of support in this area and aims to expand it significantly in the years ahead. As we mark our tenth anniversary, we note the progress that has been made in communities in terms of not only autism awareness but true acceptance, but that reality is yet to be felt by every child in every part of Ireland. We will continue our work in this regard and call on the State to meets its obligations without further delay. In that regard, we recently published our general election manifesto which outlines the steps we think need to be taken in the next five years to ensure every child fully realises their rights.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Harris. I will now go to our Vice Chair, Deputy Tully, who is substituting for Deputy Ellis.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I welcome all our witnesses and thank them for their contributions. As is natural with young people, much of the focus is on education, where we all spend most of our youth. For some of us that was a long time ago. Are we a long way from a truly inclusive education system? I have come from a presentation in the audiovisual room where representatives, both parents and staff members, from three special schools in different parts of the country were present. Their focus was on the removal of therapies from special schools in 2020 and the call for those to be reinstated. A pilot programme was announced but has not been launched. Therapies in special and mainstream schools are vital. The CDNTs are not working. I agree totally with Mr. Harris about having a stakeholder-led review. We need to get to the nub of the problem with the CDNTs. Why is that not working? Children are missing out on so much, not being given a fair chance in life and not getting the supports they require to get an education, to progress to further education, training or employment and to live independently. One principal said she had witnessed four of her students, some of them quite young, going into residential care because the families cannot cope because the children are not getting the supports they need.

When I mention inclusive education to parents of children with additional needs, they are often nervous because they have a vision of going into a mainstream school and not getting the supports they require. I understand where they are coming from. I know Ms Soraghan does not like the term "special school" but there are some excellent schools for children with additional needs. That said, how many of them could actually be educated in mainstream schools with the proper supports?

I agree on the lack of awareness and proper understanding of disability among many teachers and SNAs. Some have understanding and the majority try but, unfortunately, they are not fully trained. That is one reason parents go to special schools rather than special classes or autistic classes in mainstream schools.

Mr. Harris mentioned AAC devices. They are very slow. A parent told me last week her son is pre-verbal. She feels he would benefit so much from the AAC device but she is getting knocked back all the time by the CDNT, which should be providing the device. She is told she needs to do such a course first and another course second, that those courses are full and that she will have to wait until some time next year. She is panicking because her son is missing out on vital supports prior to starting school. Have the witnesses any advice on that or on speeding up that process?

I commend both organisations on having youth wings established. It is important to be advocates for yourselves on issues that affect youth and as a social outlet for young people sharing ideas and supporting each other.

Mr. Adam Harris:

I thank the Deputy and recognise the Sinn Féin motion last night. We appreciate the engagement we had with the Deputy in that regard.

In terms of inclusive education, I recognise at the outset that we see fantastic examples of inclusion on the ground but our concern is that it is still something we remark upon when it happens for an autistic child, whereas we would never expect any less for a neurotypical child. It is clear from this year's Same Chance Report that an inclusive university education system is very far off for autistic young people. Families are having to fight to get into the classroom and that is the first of a series of fights. To put it simply, I do not believe we will ever achieve an inclusive education system until we move to a rights-based model. That is twofold: it is rights-based in terms of access to resources and services but it is also rights-based in terms of training and regulation in the classroom. That dual challenge erects barriers for our community across the country.

In addressing inclusive education, it is important to say we see children in mainstream schools who are not included in school and we equally see children enrolled in special schools who are not included in school. When I answer this question, I am not talking about the context of their enrolment as much as what happens in our classrooms. Inclusion is not just permission to enter a building; it is everything that happens from there. What are the steps we need to take to break down these barriers? Our general election manifesto has a number of key asks. We fully agree with the Deputy that we need to move to a model where therapeutic supports are provided within schools. It is important we do not create a reality where those supports are only available in special schools because that would force more parents to choose that option, as opposed to engaging in mainstream education.

We have had the EPSEN review and are still awaiting the final report, but we need to make sure that in the very early stages of the next Oireachtas, an EPSEN Act will be not just reviewed and passed but fully implemented, and that has to include firm rights to be included in school but also to access the supports that the child needs. Moreover, critically, we need to see regulation and training. Parents can enrol their child in a special school, but the reality is the child might be taught by a teacher who does not have any training in the field of autism. More than one fifth of the students represented in our Same Chance report had been suspended from school in the previous year, while the trends relating to physical restraint are very worrying. For example, 12% of the children had been physically restrained. We really need to see much more robust regulation and that has to be followed through with mandatory training.

In respect of the AAC programme, the pilot programme we are operating will be able to provide devices to 550 autistic children in the year ahead. There are a number of streams to that programme, namely, a “borrow and keep” scheme as well and one pathway for children who have speech and language therapy support and another for those who do not. It might useful if the Deputy's office were happy to get in touch with AsIAm and perhaps we could engage with that parent directly.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Mr. Harris.

Ms Paula Soraghan:

We in ILMI are passionate about mainstream supports for young disabled people. We understand and recognise that a lot of work has been done thus far on inclusion and there have been a lot of wins. We have come a long way but we still have a long way to go, unfortunately. We find that for many young disabled people, because disability is still understood predominantly as a medical and personal issue, they can feel as though they are the problem. That issue has been raised time and again within the youth collective, as has the need to move away from that and to have a mechanism whereby there will be a pathway for DPOs to engage with schools and parents as a way of support to break down those barriers. If a young disabled person constantly believes he or she is the problem and just needs to accept matters as they are to overcome the challenges, he or she will keep on believing that and, unfortunately, continue to be subjected to limited expectations, and that will be the case within education and beyond. Unfortunately, in-school supports are just in school and do not exist outside of school.

We need robust resourcing and investment in DPOs locally and nationally, and within that, personal assistance service supports for disabled people who need them. This applies especially to young disabled people because if there are personal assistance service supports in schools and that is then the case outside of school as well, that will lead to a paradigm shift in the culture of school and the minds of both young disabled people and non-disabled pupils and teachers such that disability is not a personal tragedy but a social and political issue. When barriers are removed for young disabled people and pathways are made accessible, that is a way of future-proofing for everybody and making opportunities accessible for everyone. We need to think ahead and put the structures in place to make that a reality. It will take time but it is definitely worth investing in.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I thank the witnesses for their presentations, which were very informative and useful. I thank them also for attending the meeting and articulating the issues that need to be addressed. As they will know, this committee works on a cross-party basis and has been a very united committee under the stewardship of the Chairperson and Vice Chairperson. It is a committee that genuinely wants to make a difference and I know it has challenged many Departments and stakeholders, as the witnesses will probably know, about how to deliver for their issues.

What does ILMI’s community leadership team project offer to young people with disabilities? Ms Soraghan stated disabled children can be locked away in segregated education, segregated day centres or segregated residential settings and become dehumanised, forgotten about and ignored. What does real inclusion look like for disabled children? How can Departments and other stakeholders raise awareness, remove barriers and make environments, including education and health environments, inclusive for children with disabilities?

Ms Paula Soraghan:

My role is as a community development worker, so I work on the VOICE project, which is an acronym for virtual online inclusive communities for empowerment, a community development project in the south east funded by the Department of Rural and Community Development. Before I started working with ILMI in January 2022, I was a member of that project and the youth collective, so I know how valuable that space is. Starting in 2023, I co-facilitated it, and I am now the facilitator of the space. It is important because it is a space where disabled people, throughout the island of Ireland, on a cross-impairment basis, that is, regardless of the person's impairment, between the ages of 16 and 30, can engage with like-minded people about issues that are affecting them as young disabled persons. It is a social space but it is also a space to address policy issues. We have worked with, for example, Hub na nÓg on the participation of disabled children and young people. We have also engaged with the National Disability Authority on guidance counselling, the importance of that in schools and how to make it inclusive to engage with young disabled people. We have also worked with many stakeholders on policy issues that affect our lives because we had found there was an absence of young disabled people within DPOs on a cross-impairment basis engaging in policy discussions within the youth collective. The youth collective was created to bridge that gap, and that is our role. It is to work as a collective and build up young disabled people's capacity and confidence, to empower them to be agents for change, and to have their voices heard and know they do have contributions to make on issues that affect them and that they do have value. That is my role in the youth collective.

On how we in ILMI would like to change things from how they currently are to what real inclusion needs to look like, it is about continued relationship-building, collaboration and co-creation with DPOs such as ILMI and Departments. As I said, there needs to be a commitment from the Government to resourcing and funding DPOs on a multi-annual basis in order that we can continue to carry out our work. We need to continue to resource the youth collective by employing a dedicated worker who can work within and nurture that space and build on the work that has been done thus far. Within policymaking, it is about moving from consultation to collaboration and co-creation, and a lot of work has been done on that. We need to build on that and build up young disabled people's capacity to take on representative roles within local structures in order that they will know they can be agents for change within their local communities, but not from a personal point of view where they share their personal stories because structural change will not take place with that approach. Rather, it has to be a collective approach, with collective representation, whereby they will be a representative of ILMI within these spaces.

I apologise but the Deputy might remind me what the third question was.

Michael Moynihan (Cork North West, Fianna Fail)
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If I may come in there, a vote has been called in the Dáil Chamber. Two Senators are attending the meeting, namely, Senators O'Loughlin and McGreehan. Perhaps they could take turns chairing the meeting while the vote takes place.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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To clarify, the third question was on how governments and other stakeholders can raise awareness and remove barriers in education and health environments, including for children with disabilities.

Ms Paula Soraghan:

I appreciate the question. The answer ties in with the answer to the second question, which is by continuing to build up relationships with DPOs, by resourcing and investing in us on a multi-annual basis and by continuing to move from consultation to collaboration and co-creation within policy spaces. We know that things are best and inclusion is achieved when we work together and when the lived experience and collective analysis are at the table.

Mr. Adam Harris:

The AsIAm youth leadership team, YLT, sits within our broader child and family support programme, which seeks to offer a suite of supports for both the child and the family by promoting well-being and self-understanding and creating social opportunities. Our YLT sits beside broader efforts to positively promote autistic self-identity in young people. Those efforts include our series of As We Are workshops for autistic teenagers and our As We Are resource for teenagers. The YLT is at the heart of everything AsIAm does, particularly on matters affecting children and young people. In the past three years, our YLT has had the opportunity to engage in training around self-advocacy skills, to represent the autism community at conferences and in the media and to meet a whole series of changemakers, from the Minister for disability to the Ombudsman for Children and this committee. The YLT has demonstrated an ability to safeguard the future of our organisation. Past members of the AsIAm YLT have gone on to become team members and board members of AsIAm and we have no doubt that our current YLT will be future leaders of our organisation.

On the question about what inclusion looks like, I will return to the name of the charity, AsIAm. For us, an inclusive education system and society for autistic young people are ones where our young people are equally valued and respected and have the same chances to live, participate and be valued for staying as they are. At the moment, there is a reality, especially in the world of education where autistic people have had the opportunity in large numbers to attend mainstream school, that there has been a reluctance to change the system to reflect that diversity. There is a sense that autistic people can be an afterthought in the environment. That came through clearly in our codes of behaviour research. For example, we saw autistic people being asked to conform to neurotypical norms around communication, regulation and sensory processing, which in many instances are unattainable or inappropriate standards for our community. We therefore need to get to much better place in that regard.

On the health system, 58% of our community noted that healthcare was not accessible to our community in the Same Chance Report 2024. Mandatory training is needed. When families or autistic adults engage with health services, there is a presumption of training that is often not a reality. Linked to that, we need to see an approach where there is no wrong door. Too often we see scenarios where people who have an autism diagnosis are misdiagnosed or excluded from mainstream health services.

Fiona O'Loughlin (Fianna Fail)
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I thank Mr. Harris, Ms Mellerick, Ms Mullock, Ms Soraghan and Ms Ward for all the work they are doing. It is important work and it is worthwhile.

To consider some of the work they have been doing on this, it is incredible that in education the number of second level special classes increased by 714% between 2010 and 2022, primarily due to a 905% increase in classes for autism. That is almost a 1,000% increase. Sometimes we forget how far we have come and how poor it was in the past. At second level, provision has grown from just 65 special classes in 2010. At primary level, it was 356 in 2010 and grew to 1,207 in 2022. In 2016, I remember checking the number and there were only 12 special classes in all of County Kildare. I was completely appalled and shocked. However, we have a long way to go.

Will AsIAm and ILMI speak about the programmes and opportunities they provide at present for school leavers and adults? Is there scope to deliver more if they had more funding to help young people with disabilities to reach their full potential and the highest level of independence possible for them? Everyone will have a different line they can aspire to.

How can the Government and various the sections of government that are involved in this area remove barriers and make environments, including education and health, inclusive for people with disabilities?

My last question relates to something I am grappling with at the moment on behalf of a few parents. We have primary care services and CDNTs that provide services for children with disabilities up to the age of 18. However, there is then a difficult transition. It is important and helpful that the Department of Education has made a decision that special schools should have career guidance. That was something this committee and the education committee fought strongly for. However, it is a difficult transition and there is no straight roadmap. Individual roadmaps are needed. Perhaps the witnesses could speak about the transition from progressing disability services to adult services.

Mr. Adam Harris:

There is a lot of territory to cover in that. First, I recognise that we have seen an enormous increase in the number of autism classes in recent years. We welcome that. However, we are concerned that the shift has taken place in the context of a significantly higher rate of diagnosis. Therefore, while we have seen an increase of almost 1,000%, at the same time we have moved from a situation where in 2017 the Department of Education was talking about one in 65 students at school to there being one in 27. The demographic shift has caused a huge challenge.

The most important thing is outcomes. When autism classes were first proposed, the concept was that they would be a vehicle to enable people to fully participate in school life, but too often we are still seeing schools within schools, autism classes being staffed by people who do not have appropriate training and people who enter autism classes at age four never getting the opportunity to meaningfully integrate before they finish at 18. In itself, that causes barriers as people transition to adulthood. We need a much sharper focus on outcomes and not only on access. That is something we are hearing increasingly often from families.

AsIAm has a dedicated team working on adult support and employment nationally. At present, approximately 1,000 adults are accessing group-based support programmes run by AsIAm. That includes post-diagnosis support, well-being support and social support programmes. Our employment team takes an approach of building capacity within mainstream employment environments and HR teams so they can meaningfully recruit from our community. The work we are doing in that area has significantly accelerated since January and we have supported more than 100 people into employment since the start of the year. However, we know we are only reaching the tip of the iceberg as 85% of autistic people are thought to be unemployed or underemployed and that will be a huge challenge demographically as we see more people age out of school in the coming years.

Thinking about what we need to do to better prepare young people, the research shows that if people have access to the workplace and workplace experiences when still in education, their chance of being unemployed later significantly decreases. The reality is that our families often have to fight tooth and nail to be able to get a student support plan.

I will set out the reality of where we need to be as a country in this regard. In addition to planning for the supports that somebody has within school, from the time that person enters their early teenage years we should be planning for their transition into adulthood and building up the skills they need in terms of accessing the workplace and identifying their strengths and support needs. The significant shift we need to see must involve a much better integration between education and life after school. It remains a concern to us that there is an automatic presumption that many autistic people will access day services as opposed to a sense that they should be supported to have access to the workplace. We need to be much more ambitious in that regard. This does not mean every autistic person working full time; it means every autistic person having the opportunity to contribute in line with their support needs and the number of hours they can work in the week. That is important from a well-being and participation point of view.

I want to make Senator O'Loughlin aware that we are piloting a new model of support called a one-stop shop that comes from Scotland. This is a community hub where autistic children and adults can drop in and access issue-based support and the suite of well-being and social supports I referred to that we run nationally. The Senator will be glad to hear that one of our two pilot sites will cover south Dublin, Kildare and west Wicklow and we hope to open it by January. We will be sure to invite the Senator to it when the opportunity comes.

Fiona O'Loughlin (Fianna Fail)
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Hopefully I will be a Deputy by then.

Mr. Adam Harris:

We will invite Senator O'Loughlin irrespective of that. We could talk all day about what education and health could do, but I will refer to three pillars. First, there is a need to have autism-specific and autism-informed supports. I am increasingly concerned from engaging with officials that there is a sense that because our community has become so large, there should be a one-size-fits-all approach. That does not work for our community. Second, it is important to consult autistic people. Very often, we are still seeing services designed and sometimes very worrying policies developed concerning autistic people with no autistic voice whatsoever. That speaks to the need for a culture shift, which is the third pillar. Within officialdom, there are still some people who think their job is to be gatekeepers, as opposed to trying to signpost and proactively support families. That is the shift we need to see.

Ms Paula Soraghan:

I thank the Senator for her question. ILMI is a national campaigning cross-impairment disabled organisation. The youth collective is only one part of that, which focuses on one particular group of people. Within the wider DPO space in ILMI, we have run a number of online spaces to help to inform policy decisions that affect the lives of disabled people, including young disabled people. For example, earlier this year, we ran a number of consultation spaces on employment. Linked in with that was education, the importance of raising expectations for education and employment, and the need to start very young in terms of the paradigm shift that is needed regarding disability. We are campaigning to shift disability from being seen as a personal tragedy to addressing it as a social and political issue. In line with that is ensuring any supports that disabled young people have within education are appropriate to their needs. At the end of the day, 100 people could have the same impairment label, but it would not affect any two of them in the same way. Impairment is an individual experience. Disability is very much a political issue that affects many people. It is more than likely that it will affect everyone in some way, shape or form, in some aspect of their lives, at some point. We need to look at educational supports through a holistic approach. We need to invest in and resource personal assistance so that it is a right. Legislation should be passed to ensure that every disabled person who needs a personal assistant, including young disabled people, has the right to one.

As I said in the opening statement, it is about rephrasing. Instead of referring to a special needs assistant, the language should be changed to make it more empowering and inclusive, and the term "personal assistant support" should be used within the education system. The issue with the current model at the moment is that the supports that young disabled people receive within education do not follow them outside of school or when they leave college. That is an issue because it can limit people's opportunities and expectations. Supports should not just exist in a vacuum. For us, independent living is all about people doing everything themselves and having the choice, control and self-determination to make decisions and choices in their lives in order that they can reach their full potential. Regardless of what a person's impairment is and how it affects him or her, he or she must be the one making the decisions for his or her life, with the appropriate supports needed, whether that is a personal assistant service or whatever the case may be. It is about changing that narrative and having a more holistic approach within it.

I will go back to how ILMI and the youth collective resourced spaces and supported people. As I said, we worked previously with the National Disability Authority on the Ask Me guidelines and the importance of consulting young disabled people. We have previously worked with Hub na nÓg on the participation of young disabled people and children within education. We have run a number of social spaces during the Covid pandemic. We ran a film club, the discussions of which led to the idea of the youth collective. We realised that there was a gap and that there was no space on a cross-impairment basis for young disabled people to connect. Some people were falling through the cracks. Although it is a massive improvement that a lot more young disabled people are accessing mainstream education, because DPOs still are not resourced properly and are still not very well known, we are finding that a lot of people are falling through the cracks. They do not know who we are or what we do. There needs to be a link between the schools and the DPOs in order for disability equality training to be delivered by DPOs and disabled people through a social-model lens to inform young disabled people of our role, how important it is and how we can support them. That would mean that their expectations are raised. They will realise that they do not have to accept limitations that are put on them because they might have a certain impairment label. For us it is not about the impairment label. Yes, the label is there and obviously it is a factor, and we know personally how to manage it. We are the experts on our own lives in that regard, but it is very much about how we can remove the barriers and work together in collaboration with other stakeholders to make society inclusive for everybody. I refer not just to physical barriers, but also to addressing ableism and ableist attitudes that can impede the participation of young disabled people and children in society.

Erin McGreehan (Fianna Fail)
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First, I want to say hello to Ms Soraghan properly. She is a good Louth woman. It is great to hear a good strong Louth accent talking to me. It is always comforting, particularly when it is so articulate and full of wisdom. I could listen to her all day.

I congratulate both ILMI and AsIAm on the work they has done. In recent years, I have come to see what they do, witness it and see the benefits the organisations have on people's individual lives. Not many of us can say we make impacts on people's lives every single day, but both organisations do that. The organisations instil in the people who come to them the audacity to have a little bit of ambition that people can do things and be proud of who they are. Mr. Harris spoke about the preconception that autistic people go through the education system and then go to a day centre as a preconceived pathway.

That troubles me. They were developed to support people and for good reasons but we now need to reimagine what we have and what we can do. People can go into further education, employment or whatever they are interested in. Ms Soraghan spoke about her organisation's youth collective. We all like to find our tribes for different aspects of our lives. When you find your tribe, it gives you many opportunities.

I want to delve deeper into the one-stop shop. We spoke about that earlier. If I, as an individual, go to a one-stop shop, what am I going to get? How can I support AsIAm in making that a national service? What can we do to support ILMI's youth collective, which allows young people to come together and have the guts to shake the pot a little bit? That is exactly what ILMI is doing. It provides for people who want to make friends but also get involved in policy change. It also provides for those who just want to have a good time. How can we, as policy-makers in this House, support organisations like ILMI in driving that out nationally so that people can find their tribe and their friends and have the audacity to have ambition and so that doors will be opened for them or they will understand how to smash down the doors themselves?

Mr. Adam Harris:

I thank the Senator. We have now met twice in one day. We really appreciate all the time she has given us. I fully agree; one of the great challenges for our community over the coming decade will be the employment space. There is a real need to move the conversation beyond awareness, with one or two jobs here and one or two pilot programmes there, and towards an ambitious national goal in addressing this. In the UK, the British Government has recently published the Buckland report, an ambitious plan for how autistic employment can be doubled by 2030. That is the sort of ambition we need when we look at the scale of the challenge.

I thank the Senator for her question on the one-stop shop. My colleague Niamh Mellerick and I had the opportunity to visit Scotland last year to see these services in operation. They have been in place since 2005 and have received a really fantastic response from autistic adults and the parents of autistic children. In Scotland, these services were initially introduced to target and support autistic adults where there was no existing service provision. It is a social care-led model and is very much responsive to community need. What will happen in the one-stop shop will directly reflect the priorities for autistic people in that area. A family may present as they are going through the diagnostic process to seek some support in understanding what that process involves. A family may come post diagnosis to set a number of goals with one of our advisers with regard to, for example, accessing education or dealing with a day-to-day living challenge. Autistic adults may come to meet other autistic adults, to explore their identity further or to access a career clinic. There is mix of one-to-one advice-based support and group-based or programmatic support. Our general election manifesto calls for the roll-out of this model nationally. We think that would require a minimum of nine locations. We have costed this at €6 million. We would very much appreciate manifesto commitments in respect of the roll-out of one-stop shops and increased investment in that area.

Ms Paula Soraghan:

I thank Senator McGreehan very much for her question. It is lovely to see her again. In answer to her question, as I mentioned in the opening statement, the youth collective is run on a voluntary basis because, although I am very passionate about the work and this is my second year facilitating it, it is unfortunately not my full-time job. I am employed on the VOICE pilot project through the Department of Rural and Community Development's community development programme but I am very passionate about the youth collective and the importance of that space. We need a commitment that there will be more funding and resourcing for DPOs like ILMI. For example, we need a dedicated youth worker to be employed full-time to work within that space, to nurture it, to help it grow and to build on the work that I and previous colleagues have done over the last few years. The youth collective has been going since 2020 and has achieved some great work, as I have mentioned. We could achieve a lot more if there was a dedicated youth worker working full-time to nurture that space. There is a lot of opportunity and we would appreciate a commitment from the State in respect of multiannual funding to allow for dedicated resourcing to help it to grow and continue. Although we have reached many young disabled people, people can be very busy and different things can happen in their lives. Some are now over 30 and are outside the age bracket, although they are still engaged with ILMI as a whole, which is fantastic. We are just aware that more funding and more resourcing would mean we would be able to reach more young disabled people, people who feel isolated or lonely at the moment and who feel they are the problem and there is no space out there for them. It would really help to change that.

Seán Canney (Galway East, Independent)
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The witnesses are all very welcome. I will start with what is happening in education. In Ms Soraghan's opening statement, she talked about person-centred personalised supports. Is it a very important aspect of education and work life that individuals have personal assistance that suits them and the challenges they face in life? She also said that disabled persons organisations are underfunded. She has just mentioned multiannual or recurring funding to give certainty to the organisation in its work and its planning as opposed to being given funding for nine or ten months and then having to hold its breath until it gets into the next year's budget. How can we address that? Does Ms Soraghan have any comments on that? What recommendations would she have us, as politicians, make to the Government in respect of multiannual funding to allow for some sort of certainty?

There is another issue I have come across. Perhaps Mr. Harris and Ms Mullock would respond to this. On many occasions, people have come to my constituency office because their children have reached 18 and the transition from children's network services to adult services has left them feeling like they are starting all over again. It is like the door is closed when they leave children's services and they are now looking for the door to get into adult services. In many cases, CAMHS and any other services that are involved refer people to the emergency department at this stage. The department then refers them back to local services or outpatient day services. It is another stress for families. When their children reach 18 years of age, they have to start all over again. Will the witnesses comment on that and tell us what we should be doing in this regard?

In our discussions here, I often think about international best practice for young people who have autism or a disability. It came up in something we were doing the other day. Is there a country we should model ourselves on? Are we a model for every other country? What are the witnesses' opinions on that? I am sure they will have some comments to make in that regard.

Michael Moynihan (Cork North West, Fianna Fail)
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Would Ms Mullock like to comment?

Ms Emily Mullock:

No.

Mr. Adam Harris:

With regard to the issue around adults, we were talking a moment ago about better transition planning. That is something we are seeing as a real failure at the moment. As the Deputy said, people can fall off a cliff when they hit 16 or 18 years of age, so we need to see a much more seamless planning pathway with regard to supports for people progressing from children's services to adult services. Unfortunately, what Deputy Canney described is something we see all too often. People have to present to accident and emergency departments and at times also have to rely on the emergency services. That shows a system in crisis and a system that has not established those pathways. When we talk about autistic adults in Ireland generally, there is a significant lack of supports. To give the Deputy one example, there is still no public pathway for adult assessment of autism in Ireland. We see people incur huge costs of up to €850 to get something that was not identified in a timely way when they were a child. That is a huge challenge.

It is always challenging when we pick another country because there can be a sense that the grass can always be greener. Then, when we go to European meetings and meet colleagues, they tell us that there are huge challenges in their contexts as well. There are certainly some similarities. I would say that culturally we are in a very promising place. We are in a leadership role in some respects in that there has been a shift on the ground at a community level. People are committed to becoming more inclusive even if they do not know the steps we have to take to get there.

We are moving further and further away from the medical model, which is welcome. That is not necessarily the case in every European country. Inevitably, we would have to point to Scandinavia as having examples of good practice in the area of autism. I would also say that despite challenges around resources, we would also see a far superior delivery of supports and services within the UK. Certainly, as an organisation, we have learned a huge amount from engaging with Scottish Autism. I know the Deputy has been working for some time around the idea of putting the autism strategy into legislation in Ireland and, of course, that is something that has been in place in Scotland for many years now. There are definitely learnings we can take from Scotland.

Michael Moynihan (Cork North West, Fianna Fail)
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I call Ms Soraghan.

Ms Paula Soraghan:

I thank the Chair very much. For us, it is definitely very important that the supports move from this idea of seeing disability as a personal problem and something that is wrong with the person. People need specialised supports, because we find there is quite a paternalistic approach. Although there are a lot of wonderful people within the system and they are well-meaning, the current approach does not work. It does have a negative effect on young disabled people's sense of self and their self-esteem. They believe that because what they see is that they have a "disability", they then internalise that and believe that they cannot do X, Y and Z. That then goes beyond school and produces the expectations they have of a future outside of school and into employment, etc. Therefore, we would be passionate about making sure that personal assistance is legislated for so that it becomes a right.

We have campaigned for personal assistance to be a right in Ireland for everybody who needs it. We have had major success but the next step needs to be taken, so that when it comes to the assessments of need, it is a person-centred approach rather than a tick-the-box exercise where disability is seen as a medical issue and an impairment. We find that is quite rigid and it can lower expectations and limit the state of people's outcomes and opportunities. We would encourage getting as much support as we can. We have had a lot of TD support, for example, Deputy Pringle has been a huge supporter of the personal assistance campaign, which we welcome. Other TDs have supported us as well, which has been fantastic. We would encourage more support in that regard.

We would definitely see as important the need to bridge the gap that has been mentioned between supports for disabled children and when they reach adulthood. There is a gap, and people often then fall off. It is more about inclusive education and supports and being person-centred, so that it is what the disabled person needs. It is around the holistic approach and, again, making sure that young disabled people have the spaces to engage with other disabled people from a social point of view and that they are informed about policy that affects them. It is making sure their capacity is built around what changes they can make and that they are at the table, so to speak, so that they can take on representation roles and be involved in their local and national disabled people's organisation, DPO, and be an agent for change in their communities.

As I mentioned previously, many young disabled people are feeling isolated. They feel they are not part of a community, so to speak, whereas if DPOs were resourced appropriately on a multi-annual basis, that would address that issue. We would welcome more support in terms of the upcoming elections and more support from Government around the value of DPOs. There has been a lot of work thus far and a lot of support, which we welcome. We would encourage that to continue so we can continue our work and take it to the next step.

Although we are doing great work, we do have a limited amount of resources. We are very passionate about what we do, and we know that if we were given more resources and more funding on a multi-annual basis, we would be able to employ more staff, have more campaigns and carry out more work that we know will have a massive positive effect on young disabled people's lives.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Soraghan. I call Deputy Murnane O'Connor.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank the witnesses. A lot of my questions have been asked, but one of would be about how there is no stand-alone DPO for children. The Government's Participation of Children and Young People in Decision-making Action Plan 2024-2028 was published earlier this year. Can the witnesses discuss how this action plan might support the creation of stand-alone children's DPOs?

I know about all the work the witnesses are doing and I want to compliment them. How does their organisation identify and include groups that may be under-represented? That is something that has come to my attention, and I see in my clinics daily. We are very lucky in County Carlow. We have great services like Rehab Group, Delta Centre, BEAM Services and National Learning Network Carlow. We are very lucky. They are excellent. The witnesses are probably aware of them. There are challenges, however. I want to ask about the challenges of going into the workforce and how we could look at something like that. What do we need to do to raise more awareness? Now, while people are very good, and I am not saying they are not because there is great communication, there can sometimes be challenges. How do the witnesses see those challenges?

Families often come to me who may have issues with an invalidity payment or other payments, and there are challenges there. Do the witnesses come across that much? That is something about which I speak to families regularly and I make representations on their behalf. That should not be happening. How do we look at this? How do we fix it? How do we find a solution so that no family is in a position where someone is entitled to a payment and not getting it? There can be challenges around information whereby they are told to go back to their doctor and so forth. That can be disheartening sometimes.

While I am here, I want to congratulate Carlow Special Olympics team. I do not know if people are aware, but they are representing Ireland tomorrow in Barcelona. We are very proud of our Special Olympians in the Carlow football team. They are heading to Barcelona tomorrow, which is great for Carlow and, of course, they are representing Ireland. That is another big thing.

Erin McGreehan (Fianna Fail)
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Carlow first.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Carlow first.

I want to compliment the witnesses. To me, lack of services is the biggest issue. We might look at the children's disability network teams, CDNTs, and trying to get services for younger children in particular, but even in general, we need to provide more funding. We need to look at the bigger picture. I want to compliment everyone here. Today has been great, and their opening statements were excellent. I congratulate them for highlighting the concerns and issues we face daily, as they do. Well done to them.

Michael Moynihan (Cork North West, Fianna Fail)
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Well done; there were seven mentions of Carlow.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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We are neighbours.

Michael Moynihan (Cork North West, Fianna Fail)
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I understand; well done. Mr. Harris might respond to the Deputy's comments.

Mr. Adam Harris:

Would you believe, I was at an event earlier this week in PTSB and I met a member of the team going to represent Carlow in Barcelona-----

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Go away, did you?

Mr. Adam Harris:

-----so the very best of luck to them.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Yes, it is a great achievement.

Mr. Adam Harris:

In terms of the DPO piece, from the point of view of our organisation, we aim to be a disabled persons organisation across the life cycle.

That is important because there can be far too much siloing of children and adults within our community but what we would like to see is to be able to scale much greater that child-voice piece within the organisation.

We are extremely proud of our youth leadership team. There are so many more young people who would like to be engaged with us. There are so many more young people who would like to be able to access our As We Are programme. That is something needs to happen, both within the autism community but, I am sure, more generally as well.

I really appreciate the question about under-represented groups because this is something, as an organisation, we give a lot of time to. I suppose intersectionality is so important because we see the scale of barriers that autistic young people face but when autistic young people are members of other minority groups as well, those challenges can increase exponentially.

We would like to do an awful lot more with our Traveller community. This year we have done a number of pieces of work, including with Pavee Point. We would like to build that out because there is a real invisibility of autistic Travellers within our community and that is of significant concern. I was delighted to see a reference to it within the autism innovation strategy because we need to build on that.

We do a lot of work in terms of LGBT autistic young. Indeed, we have specific groups for autistic LGBT young people.

We have been very proud of the work we have been doing supporting autistic migrants. That includes a webinar series, for example, that we held recently with Ukrainian autistic people and their parents who have come to Ireland. We all know how hard it is to navigate our supports. Can you imagine doing it with that language barrier having fled war? That is something we are very concerned about. Sometimes when people are from intersectional minorities, the State does not go that extra mile to help. If anything, it can be quicker to erect barriers. That is something we need to name and be aware of.

The other question I might address is in terms of social protection. We definitely see significant evidence of welfare stealth whereby people provide all the documentation and they are just rejected and sent back. What is concerning is the lack of empathy the system shows to families. We are talking about children's rights here and, certainly, how the Department is wording, for example, the domiciliary care allowance form, is entirely inappropriate. It is asking families to write about their children, often in a very dehumanising way. That is the only way people can get access to the funding, which might be critical for them to then get the supports they need, so we need to change that language. We need to change that culture. It is evident across the board, with all the tax credits and social protection supports. The idea that we still have an incapacitated child tax credit says a lot about the culture that we still need to shift.

Ms Paula Soraghan:

I thank the members for their questions. Membership of ILMI is open to disabled people aged 16 and over. We are very well aware that many disabled people are born disabled. We need to bridge that gap and have that link and that there is a support with DPOs, such as ILMI, and parents, for example, so that they know that supports are out there for their child and that their child is not the problem because often what happens is that it is very much around deficits, what your child would never do and what your child would struggle with. It can be a massive stress on parents.

Linked in with that, within schools and communities, as I mentioned earlier, we need to move from this idea of awareness, because awareness is not effective and does not bring about systemic change to disability equality training. We need DPOs to be resourced and funded appropriately and on a multi-annual basis and to have DPOs, such as ILMI, where disabled people are employed and deliver disability equality training within the education system, including at primary, second and third levels and in colleges, but also, within communities. It is around mainstream services that young disabled children and young disabled people would be accessing, so that they are well aware that disability is a social and a political issue, that it is not a personal failing, that it is not their impairment that is the problem, that they do not need to change but society that has to change and that regardless of what your impairment is and how it affects you, everyone has value and has talent and we all deserve to receive the appropriate supports to genuinely thrive, live our lives to the fullest and, for example, to have a personal assistant service to help us with that. Going back to those person-centred supports, they are important.

Looking again through the intersectional lens, disabled people are not a homogenous group. We are not one dimensional human beings. As I mentioned in my opening statement, we are friends, brothers and sisters. We come from many different identities and they can intersect so there needs to be that recognition within the different identities disabled people have, and that holistic approach needs to be applied.

In relation to how ILMI works with marginalised groups, we are well aware that disabled people come from various backgrounds and that they have been oppressed and have been experiencing a lot of discrimination. As we work through the social model of disability lens, which sees that disability is something that is done to somebody and is an interaction between someone with an impairment label and the external environment barriers and the ablest attitudes, often that is what the social model of disability sees disability as. It is not something that a person has but it is something that is done to a person with a impairment label or a perceived impairment label. It can be very empowering for many disabled people to experience that light-bulb moment or that paradigm shift that, "I am not the problem, I do not need to change and it is society that needs to change."

As Senator McGreehan mentioned earlier, many of our members feel that they have been welcomed into their tribe, so to speak. They finally feel that they have been welcomed into a community. Many people feel isolated and lonely. They feel like they are the problem but when they come into the Independent Living Movement Ireland, they understand that we can work together to achieve social change for everybody. They learn new skills. There are different social spaces, as I say, such as the youth collective and different policy spaces. At present, we are running health consultations, for example. There is an element of catharsis where disabled people primarily do not have that space to talk about issues that affect them whereas DPOs, such as ILMI, are an autonomous space as a collective for disabled people to come together, whether in person or online, to address issues that are affecting us.

We are not only about the issues. We are action and solution based and around the collective. It is not about the system can change for me as an individual disable person. It is around this being the system at present, this is what needs to change and this is what we can do as a collective of disabled people to break down the barriers and make society inclusive for everybody and that these are the allies that we need to help us along the way because we cannot do it on our own. There are allies that we have within this committee and we welcome that. We need to continue to build on that and future-proof an Ireland for everyone, regardless of whether you are disabled or not.

We are an ageing population. With housing, for example, if you future-proofing and if there are universally-designed homes, it would mean fewer people would need to go into nursing homes. You could live in your home and it would suit your needs throughout your life course. We are passionate about that and very aware of that. State funding and resourcing needs to reflect that that is embedded in future policies.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Soraghan, Ms Mullock and Mr. Harris for their engagement this afternoon, although I apologise that we had to step out for a number of votes but Senators O'Loughlin and McGreehan kept it going. I thank them for their sincerity and the work they are doing on behalf of the communities they represent. It is hugely important that they continue that work. Right through, the services need to improve, etc. I congratulate them on that and thank them for coming before the committee.

I thank the members for their participation in it. We had full participation again this afternoon. I also thank our team. Our team are an absolutely superb group of people who have been working with us and for whom there is no job too large or too small. They have given huge service to the Joint Committee on Disability Matters. The team has played a huge role in having the committee as strong and as collective as it is. I thank all of those who are currently working on it and, indeed, those who have worked on it over the past couple of years.

It is a pleasure to be a part of their team and to continue the great work they do. I thank them very much. There is one thing for certain, which is that we have to future proof because the challenges out there for people with disabilities from the cradle to the grave are continuing to grow and we have to challenge the system. I thank the witnesses for their engagement.