Ms Louise Loughlin:

I thank the members for the opportunity to speak today. I am the national manager of the National Advocacy Service for People with Disabilities. I am joined by my colleague, Suzy Byrne, our greater Dublin regional manager.

Our organisation provides professional representative advocacy to adults with disabilities throughout Ireland to ensure that their will and preferences are heard in decisions that affect their lives. In 2020, we provided more than 3,700 advocacy interventions. These included more than 1,000 individual cases. Seven in every ten of these cases could be described as complex, whereby the advocate helped with two or more issues. We also provided information, advice and support in more than 2,700 instances. We host the patient advocacy service, which was commissioned by the Department of Health. The service provides independent, free, and confidential advocacy for people who wish to make complaints or draw attention to patient-safety incidents or care they have received in public acute hospitals or nursing homes.

We believe that living in residential settings such as congregated settings, group homes, nursing homes and mental health facilities can be a severe barrier to accessing community and cultural life. This point is illustrated throughout the report Time to Move on from Congregated Settings: A Strategy for Community Inclusion, which was published as far back as 2011.

We welcome the refreshed commitment in the programme for Government in respect of decongregation, which involves the movement of people with disabilities from congregated settings to homes in the community with the necessary supports. This allows people to live more independently and become more involved with their community. Advocacy can play a crucial role in ensuring that such transitions are person-centred. Our work is particularly significant in light of the additional barriers to community inclusion and engagement that people with life histories of institutionalisation may experience, and the stigma that is still sometimes attached to being a person living with a disability. However, we have noticed a trend regarding a slowing down in the closure of congregated settings. We have also noted that the issues associated with these settings have been compounded by Covid restrictions.

Visiting restrictions meant that people living in services had prolonged periods without access to their communities or face-to-face contact with friends or family. People have told us that they had feelings of isolation, loneliness and anxiety. Even the vaccine roll-out impinged on people's community participation. In some instances, family members sought to prevent the disabled person from receiving the vaccine. Our work ensured that did not happen. This meant the individuals concerned could become more involved in community life as public health restrictions were lifted.

Some residential services have rigid schedules. This can be due to issues such as staffing and resourcing but, for the person living in them, it may mean having to eat food at a certain time, having strictly enforced sleeping schedules and a lack of access to transport. This results in limitations on participation in community and cultural life.

We aim to empower people to become active participants in decisions about their own lives and decision-making. This is in line with both the Assisted Decision-Making (Capacity) Act 2015 and the UN Convention on the Rights of Persons with Disabilities, UNCRPD. We look forward to the full commencement and implementation of the Act next year and to the decision support service going live.

As referred to by previous speakers, there is a financial cost to attending cultural events, engaging in the community and participating in public life. In 2020, 12% of our cases were about finances. People with disabilities sometimes find that family members and carers are overly controlling of how they spend their money. We have experience of cases in which people still cannot access their own bank account, in which people are not consulted on how their estates are managed and in which residential services seek information about why a person is accessing their funds. We also have experience of cases in which people do not have sufficient funds left for social activities after paying for nursing home charges.

Important facilitators to accessing community and cultural life are home support and personal assistance services. There is no statutory provision for either of these. Access depends on geography. There should be a standardised national system to ensure everyone has equal and fair access to these supports. We welcome the current consultation by HIQA on the development of draft national standards for home support services. This should be extended to personal assistance services.

We ask the committee to recognise that this lack of support and consequent lack of autonomy for a disabled person directly contravenes the UNCRPD article to enable active participation in the community. It may prevent disabled people from becoming involved in public life or cultural events. While we recognise the reasons behind this are complex, we urge this committee to recommend that all care and support services be resourced and supported to ensure all people availing of such services can live their lives as fully as possible.

We thank all the members of the committee for their commitment to disability matters, and we would welcome the opportunity to provide more information this morning or at a later stage. We will be launching our suite of reports on advocacy matters on 20 October. We will highlight in more detail the impact of Covid on the people we advocate for. Members are all welcome to attend. I thank the Chairman and members.