Joint Committee on Disability Matters – Inclusion Ireland Opening Statement

February 9^th 2023

Good morning.

My name is Derval McDonagh and I am the Chief Executive Officer of Inclusion Ireland. I would like to sincerely thank the committee for inviting Inclusion Ireland to this important session today.

I am joined by my colleague Paul Alford who is an advocate and spokesperson for Inclusion Ireland. I will hand over to Paul to share his thoughts on congregated settings and institutional living in a moment.

But first, a brief piece 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 people to have their voices heard and advocating for rights under the United Nations Convention on the Rights of Persons with Disabilities.

Inclusion is a word which is over-used 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 Magdalene laundries to psychiatric institutions, 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. Over 2,400 people still live in homes with more than 10 people. We know of institutions where 30 or 40 people live together in a campus style setting.

But institutional living 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 does suggests however, that a person has much more of a chance of a good life in a smaller, community based home. HIQA’s report in November 2021 stated that “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 that a non disabled person would have no choice but to live in a house with people they don’t know (or maybe even don’t like) for their entire lives. We would never consider that a non disabled person would have 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, 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, 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, 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 1300 people 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.

So what needs to change?

A clear articulated vision for community living and a fully costed plan for the next 10 years is one way we can stem the tide of institutionalisation and and support people in rights based ways to live a life of their choosing.  This plan has to also include people living at home with their families right now who should have the right to move into a home of their own. 1500 people with intellectual disabilities are living with primary carers who themselves are over 70 years of age, approximately 485 of whom are over 80. (Figures from the National Federation of Voluntary Service Providers 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. This has to change. The Disability Capacity review implementation plan has to be published without any 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 single 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, to drink, to stay healthy) to people who need a small amount of support to go and work and live their lives. Our colleague Angela at Inclusion Ireland recently said “human rights are not transactional”. You do not “get” rights because of what you “contribute” to society in economic terms. You are a rights holder because you are human and deserve respect, love and care. You deserve a world with equal opportunity to a good life, to a home of your own, to your own front door key, to a life that is yours.

I will now hand you over to my colleague Paul who will talk to you about his experience.

 

Good morning

My name is Paul Alford.

I am an advocate working with Inclusion Ireland for the last 18 years.

I want to tell you about my experience living in institutions and what my life is like now.

From 1983 to 1990 I lived in an institution and we lived in dormitories.

I didn’t have any choice over what to eat and what time I went to bed or got up.

In 1990 I moved to a group home where I shared a room with one other person.

You had to get permission to go out and let them know where you were going.

I worked in a workshop and a shop. The work was hard and the pay was very bad.

Then I worked in a nursing home and I wasn’t happy. I wasn’t properly paid for all the work I was doing.

I talked to FAS about getting a new job. Then I talked to a social worker.

In 2003 the social worker helped me to get a job in Shadow Box theatre company in Bray. It was a FAS job and it was the first time that I got proper wages.

The hours were very long but I really enjoyed the work.

My first holiday that I went on my own was to Australia. The institution I was living in didn’t want me to go.

On August 16^th  2005 I started working with Inclusion Ireland. It was my first proper job.

One day I went to a meeting with my CEO at the time.

At the meeting I said that the institution and my family didn’t want me to leave.

We got some help from possibilities plus to find my own place.

It took me 3 years to find a place with support.

In 2008 I moved out to an independent living home . I had to learn how to cook my own meals and do my washing and other things.

It was the first time that I had a room on my own.

I got to choose my own supporter when I moved out.

This was so important to me because until then I never had a choice about who was working with me.

I read all the CVs and then we had interviews. I picked the person that suited me and my life.

It’s not what the staff wants it’s what the person wants themselves.

 

They’re not here to tell you what to do. I had to learn about that because I was so used to being told what to do.

I think I am still learning about this, years later.

Now I work with Inclusion Ireland. I do a lot of work on easy-to-read information. I also give talks on my life story and I try to help other people.

It’s my life and it’s my choice. I want everyone to have that chance.

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