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.