Ms Derval McDonagh:

Good morning. I sincerely thank the committee for inviting us to this important session. I will hand over shortly to my colleague, Mr. Alford, advocate and spokesperson for our organisation, to share his thoughts on congregated settings and institutional living in a moment.

First, I will speak briefly about 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 advocating for rights under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. "Inclusion" is a word which is overused and misunderstood. It is fundamentally about community, belonging and valuing people for who they are. It is about systematically dismantling the barriers that people face in having a good life. It is not about “fixing” people, it is about fixing systems. One of the most pervasive systems we have in Ireland today is that of institutionalisation and institutional thinking.

Ireland has a long and sad history of institutionalisation, from workhouses to Magdalen laundries and psychiatric institutions to direct provision centres and congregated settings for disabled people. We have closed many institutions in Ireland in recent years and yet the legacy of institutionalisation lives on for people with intellectual disabilities. More than 2,400 people still live in homes with more than ten people. We know of institutions where 30 or 40 people are living together in a campus-style setting. Institutional living, however, is about much more than numbers of people living together. Institutional thinking can exist in small houses as well as large. Fundamentally, where a person has no choice about where they live, who they live with or how they live, all the hallmarks of an institution are present.

Evidence suggests, however, that a person has much more of a chance of a good life in smaller, community-based homes. HIQA’s report in November 2021 stated: "Many residents living in campus-based or congregated settings experienced inequalities in the quality and safety of their services, control over their own lives and their ability to independently exercise their rights and choices." Institutionalisation is also a way of thinking and acting. It is a set of values and beliefs which allows us to treat one group of people differently to another. We would never conceive of a situation where a non-disabled person would have no choice but to live in a house with people they do not know, or maybe even do not like, for their entire lives. We would never consider that a non-disabled person would have fundamental choices about their lives decided by a committee. It is not only people who work in institutions, however, who think institutionally; governments and wider society can also behave in ways that enable institutional thinking, practices and beliefs. A prime example of this is the recent issue which came to light about the denial of disability payments. This would never happen to people who could express themselves verbally and who had access to advocacy and support.

Denial of rights is much more likely where information is not available to people, where people are removed from the natural rhythms of a good life, connection to community, to friends and to family. The quality of any of our lives is dependent on the quality of our relationships with people who are not paid to be there, with connection and belonging in communities and with being valued as a person. Institutional thinking allows us to shut one door and open another, repeating cycles of segregation. We close some group homes, but 1,300 people aged under 65 are now living in nursing homes. We must get to the root of institutionalisation and work towards a system of rights-based support and care for people. Thankfully, some people are beginning to really understand this in Ireland and to try and move towards this way of thinking and supporting people. When that kind of support is available to people, the results are truly transformative.

Thus, what needs to change? A clear, articulated vision for community living and a fully costed plan for the next ten years is one way we can stem the tide of institutionalisation and support people, in rights-based ways, to live a life of their choosing. This plan has to include people living at home with their families right now, who should have the right to move into a home of their own. Some 1,500 people with intellectual disabilities are living with primary carers who are over 70 years of age, approximately 485 of whom are over the age of 80. These figures are from the National Federation of Voluntary Bodies, August 2022.

Without a plan, we lurch from crisis to crisis. In some circumstances, a family carer dies, and an emergency response has to be put in place. The emergency was entirely predictable. The words, "emergency" and "homes for people with intellectual disabilities", should never be put in the same sentence. This type of response leads to further trauma inflicted on the person through needing to move home without any choice, control or transition plan at one of the most difficult times of their lives. It has to change. The disability capacity review implementation plan has to be published without further delay, otherwise, we will continue to see the same cycles repeated and the legacy of institutionalisation living on.

In all of this thinking, we must include every disabled person; from people who need intensive support to access their rights, for example, people with intellectual disabilities who need enduring and intensive care and support to eat, drink and stay healthy, to people who need a small amount of support to go to work and live their lives. Our colleague at Inclusion Ireland, Ms Angela Locke-Reilly, recently said, "Human rights are not transactional". One does not get rights because of what one contributes to society in economic terms. One is a rights holder because one is human and deserves respect, love and care. One deserves a world with equal opportunity to a good life, a home of one's own, one's own front door key and a life that is one's own. I will now hand over to my colleague, Paul Alford, who will introduce himself and talk about his experience.