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Saturday 2 December 2023 Dublin: -1°C

Opinion 'A real home feels like an unattainable dream' for many disabled people

Julie Helen of Inclusion Ireland is calling for government action on housing and supports in Budget 2023.

DISABLED PEOPLE MAKE up 13.5% of the population but represent 27% of the homeless population.

That is a scary reality, but those statistics are only the tip of the iceberg.

Deeming someone to be ‘homeless’ is an extreme categorisation and in doing that we are forgetting a large number of disabled people in our society who go under the radar but who could and should also be categorised as homeless.

I want three things.

I want us to stop hiding behind words like congregated settings or supported living arrangements that confuse people and talk about homes.

  • Read more here on how to support a major Noteworthy project to investigate how difficult it is for disabled people to secure a home in Ireland.

Secondly, I want us to truly switch from the language of ‘caring for people’ to supporting people to have their rights realised; the language of rights is much more empowering.

Thirdly, I need us to stop pitting different disabilities or support needs against each other, whether physical impairment, intellectual or sensory disability or any type of support need you can imagine. We are all humans, and whether we need a lot or a little support, we need to have it, when we need it and how we need it. 

Supports never materialise 

Outside of being homeless, over 2,800 disabled people continue to live in congregated settings.

A congregated setting is a residential placement – usually a disability service – where 10 or more people live together in a group home or campus like setting with staff in support roles.

On top of that, more than 1,300 people under the age of 65 are living in nursing homes.

Finally, there are countless disabled people living with their parents or family members for years longer than they should have to. For some ‘moving out’ into a home of their own never becomes an option because the housing and supports to live in that house never materialise.

Truthfully, it would be easier to count the disabled people who have the opportunity to have their own home, than any other group because they are so few and far between.

An unattainable dream 

We need to start talking about homes, not ‘settings’ or ‘arrangements’.

For many, a real home feels like an unattainable dream reserved for the select few who have a personalised budget or a support package that makes it possible for them.

We can throw around the figures of disabled people who are misplaced but I want you to think about what that really means.

For the 2,800 plus people who live in congregated settings, most have an intellectual disability and most of them had no choice and control about where they lived and who they lived with… for years!

Just think about that for a second.

Imagine living in a place you didn’t like with people you didn’t get on with and staff you did not want to be around.

Imagine there were rules dictating where you went and when you went there, when you had a shower, when you went to bed and when you got up again.

Imagine you had to eat when everyone else was eating and only had a choice of two options on a good day.

What I describe sounds more like prison than a life.

I describe it in extreme terms. It is really important to say that since we ratified the UN Convention on the Rights of People with Disabilities (UNCRPD) in 2018, many people who are supported by disability services do exercise some choice in how they live – but it is not enough.

All of the people in congregated setting may not want to live alone. All of them may not need around the clock care.

They all have a right to live in their community and have a right to choose where they live and who they live with. They should have the support they need to live a good life, to live near services and feel at home.

Rights start with a home

In all our disability policy we have fallen into the trap of assigning particular language to our sector and that language has made it so that we accept what is truly unacceptable.

A ‘congregated setting’ is a constructed term that is rooted in our health and disability services and it has become the norm for only a few people per year to move into the community.

When I think of more than 1,300 people under the age of 65 who are living in nursing homes, I get so angry. Each individual is there because there is no ‘more suitable’ place for them.

Imagine if you woke up every single day knowing you were in the wrong place, knowing that you don’t belong. It would make you feel like nobody cares! It’s just not right and needs to change now.

Our disability services were born out of charity, out of people having nowhere to turn and good human beings stepping in to change it. Care became our barometer for whether we were doing a good job or not.

In our commitments to UNCRPD, care is no longer good enough, people being in bad situations is not good enough.

We must make sure disabled people – all disabled people – have their rights realised and that starts with a home, where each person has choice and control over where they live, who they live with, what they do and where they go.

It includes all the supports each individual needs to live the life of their choosing- anything less is not good enough!

Real action plan needed

In Budget 2023 we need to see a real action plan from government. 

This needs to detail how many will be funded to move out of congregated settings and how many will be funded to move out of their family home and into a home of their own. It should also show how many people will move out of completely unsuitable nursing homes.

When we see the real numbers, it might wake us up so we can see how big an issue this is and how long it will take at the current pace for people to have a home of their own.

Julie Helen is Communication and Information Manager with Inclusion Ireland, a national advocacy organisation for people with an intellectual disability. Julie is a disabled woman who is a journalist and activist.  

Design for NO ROOM - Wheelchair user shaking hands with business person who is handing them keys to a house.

NO ROOM Investigation

Across Ireland, over 2,800 disabled people continue to live in congregated settings and more than 1,300 people under the age of 65 are living in nursing homes.

The Noteworthy investigative team want to conduct an in-depth investigation into the housing crisis facing disabled people and meet with disabled people living in inappropriate accommodation. 

Here’s how to help support this proposed investigation>

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