Ms Joanne Condon:

I am the acting national manager of the National Advocacy Service for people with disabilities. I am joined by my colleague, Ms Suzy Byrne, Dublin regional manager. The NAS, which is funded by the Citizens Information Board, CIB, provides independent, professional and free one-to-one advocacy services to adults with disabilities. We ensure that their will and preferences are heard in decisions that affect their lives. Last year, we provided more than 3,600 advocacy interventions.

Demand for our services has grown dramatically in 2022. Our waiting list figures have increased from 161 people at the start of 2022, to 250 people by year-end. While such waiting lists look rather small when compared to waiting lists for other public services, behind these numbers lie individuals who are facing significant barriers and experiencing personal suffering. This increase can be attributed to being inadequately resourced to meet the growing demand for our service, which is linked to a wide range of issues. We anticipate that the Assisted Decision-Making (Capacity) (Amendment) Act 2022, due to commence this year, will also result in significant additional demand for our services.

We also host the patient advocacy service, which is commissioned by the Department of Health. It provides independent, free, and confidential advocacy for people who wish to make complaints about their care in public acute hospitals and HSE-operated and private nursing homes.

NAS welcomes the report, The Right Home: The Housing Needs of People with Disabilities, published by CIB and the DIF. It illustrates the urgent need to develop suitable housing solutions for people with disabilities. This research is part of a wider range of research in social service areas that CIB undertakes. NAS contributed to this report and we support its recommendations and findings. However, today we want to focus the committee’s attention on giving a voice to the lived experiences of the people we support.

NAS welcomes the committee’s commitment to highlighting the importance of hastening decongregation. This is key to achieving Article 19 of the UNCRPD. Almost 90% of people living in congregated settings have an intellectual disability. A large proportion of this group communicates differently, that is, other than with words, and people in this situation may struggle to have their lived experience and their will and preferences heard. NAS has a particular remit to work with people living in residential services, specifically with those who communicate differently. Advocates understand these people’s lived experiences through the use of four internationally recognised approaches to independent advocacy. By adopting a combination of these approaches, advocates can, for example, show how people have little stimulation or social interaction in their daily routines and how their quality of life is impacted negatively as a result. NAS casework in congregated disability and mental health services suggests that such settings are where people are far more likely to have a poor quality of life and experience human rights violations. Living in a congregated setting is not as simple as living in a space with ten or more people. It is about the restrictive management of every aspect of a person’s life, which results in minimal choice about everything from what and when to eat, how to spend one’s time and money, who to live with, what time to get up and what time to go to bed. The opportunity for these adults to live an ordinary life is rarely possible. Many people we have worked with have reported feelings of loneliness, frustration and exclusion.

This is seen in Kelly’s case. Kelly has an intellectual disability and lives in a shared house in a congregated campus setting. She is an older woman and has spent her life living there. Her housemates have always been chosen for her. Living with others who have different support needs is difficult. Kelly has had her right to dignity and privacy undermined and has been the target of abuse from her peers. She has adapted by withdrawing to her room and avoiding the common living areas of her own home. Kelly requires sustained staff support to have quality experiences. However, her opportunities are limited to the time staff can spare away from people who express their needs in more obvious ways. In her day service, Kelly completes the same one or two tasks every day, largely in isolation. She says she would love to have a new job. Kelly wants to return to her pre-Covid off-campus activities, which were community-based, but this has not happened due to staffing. She has been confined to on-campus living and her mobility and health have deteriorated. Kelly has become invisible to the outer community. Kelly wants a change. She talks about wanting to return home to where she grew up. She regularly says, "I have been here too long."

Experiences like Kelly’s continue to be reported across our national network of advocates. The experience of NAS advocates while working with people living in congregated settings has been stark and distressing. The following is a small sample of advocates’ observations from their work in congregated settings. One report states:

The environment is institutional with uniformed staff, regimented mealtimes and locked doors. Access to rights is not well established.

One person asks for calls at certain times as his medication has him "sleeping for large parts of the day". It has also been reported that "Residents are threatened with a move back to campus settings from community houses if their needs change". These endemic problems significantly impact the quality of life for people in congregated settings. People may also experience restrictive clothing, no access to kitchen facilities, no access to day services, limited access to transport and being under constant supervision. This is not an exhaustive list; there are many others issues. These are abuses of human rights and these should be intolerable for anyone gathered in this room today.

NAS also wants to highlight that the number of HSE-reported active congregated settings in Ireland does not accurately reflect the full extent of the issue. Other settings exist, such as nursing homes, where large numbers of people under 65 are living together, and intentional communities where the same issues observed in traditional congregated settings persist. These settings should also be counted as congregated settings and prioritised for decongregation.

The information and lived experiences that we have shared today underline the urgent need to accelerate decongregation. Everyone involved in the process must dedicate more focused resources and planning to change people’s lived experiences. We need to recognise that the provision of additional resources to organisations like NAS, which face intense demands for services without any additional resources being provided for many years, must be considered as part of any successful implementation of decongregation.