Ms Suzy Byrne:

It is important for the committee to be aware of how vast this issue is. There are 10,000 people living in designated settings that are registered with HIQA. Of those, a quarter are living in what are deemed to be large units with populations of between six and ten people. There are also people living in settings that are not inspected by HIQA and are not deemed congregated settings, including mental health community hostels for people leaving acute hospital settings. These are not regulated by HIQA or the Mental Health Commission.

Nursing homes have been mentioned. Advocates working with NAS have varied caseloads. They deal with people living in congregated settings whose rights are restricted. For some of those - unfortunately, it is a very small number - transition planning might be in place to move them into the community. I have been involved in advocacy since 2007. In 2011, the Time to Move on from Congregated Settings report was published. There was a plan to move people in congregated settings into their own homes. That plan has not been completed. There are still people living in campus-style settings or being admitted to nursing homes despite more recent recommendations in reports like that of the Ombudsman.

Due to their caseloads, advocates will see people in acute hospital settings for whom nursing home placements are still being proposed even though they do not have a nursing need. We will also see people with disabilities from congregated settings in acute hospitals because a congregated setting says it is no longer able to meet their needs even though they have only ever lived in a congregated setting. Such people are ending up in acute hospitals and looking for nursing home placements. We are not even future-proofing for the needs of people who are growing older in congregated settings in order for them to have appropriate supports, have their rights respected and have the hope of moving into their own homes with their own staff and with choices about what to do.

During Covid, people living in congregated settings had a different experience. Many do not want to return to how life was before Covid because they are now experiencing slightly more choice. That might sound strange, given the restricted pandemic situation, but some people got one-to-one staff support during Covid that they did not get beforehand. They do not want to return to having to go to a day centre and having no choice in their lives.

The issue is about much more than housing. It is about how money is spent, how plans are made and how those are followed up. There needs to be more co-ordination. Advocates spend a great deal of time speaking to people in service providers, health agencies and housing providers and trying to bring all of that information together in order to support people in making decisions. When someone comes to us and says he or she wants to move out over being unhappy with where he or she is living, it can take many years. This week, one of the people I have been working with is finally moving 12 years after first telling me that he did not want to live where he was anymore. He is now moving into his own home with his own staff and transport. That was a very long journey. Sadly, journeys are rare. There are still people entering congregated settings through emergency placements or because there is nowhere else for them.

We must also remember the large number of people living in their family homes. As Ms McDonagh mentioned, they have older parents. They are people who do not come into the discussion on where, how and with whom they will live and what choice they will have in that regard.