Ms Joanne Condon:

I thank the Deputy for her question. As Ms Loughlin has mentioned, the work of advocates can span across all of the areas that Ms Loughlin mentioned in terms of the issues involved. The Deputy asked a question on the length of our case work. I guess it depends on the complexity and the number of issues involved. For many of those we work with, they are facing not just one or two single issues; there can be multiple issues. A person may have lived in an institution for many years and he or she may have a poor quality of life, limited natural supports, limited access to appropriate therapeutic supports and limited access to his or her community. That can be further compounded by the likes of next-of-kin consent issues. For example, we do a lot of work around issues such as Do Not Attempt Resuscitation orders, where individuals' own wishes are not being sought should they be facing end-of-life or emergency decision-making. Their decisions around treatment choices as to whether they should be accessing healthcare services are often ignored to the detriment of seeking families' wishes as to how they want their loved one to be cared for. Obviously, for an adult with a disability in the context of discussions around the UNCRPD and rights and people living ordinary self-determined lives, it is essential that people's voices are heard and they have the opportunity to make those decisions for themselves. We do a huge amount of work in upholding rights in pointing to the HSE's consent policy, which very often is not understood or implemented across many divisions of healthcare services. There is a prevalence of next-of-kin forms that exist within our healthcare services that seek the consent of third parties, which has absolutely no legitimate basis without proper legal authority to do so. That is a huge area of our work.

Throughout the Covid-19 pandemic, we have also seen much next-of-kin decision-making with regard to Covid vaccines. Again, people's own wishes around whether they chose to receive or refuse vaccinations were ignored and family members were asked to make decisions. At a very basic level, rights are not being respected in day-to-day decision-making, never mind the fight with regard to access to services that we have already heard so well described by the previous speakers. We also work with those who are most marginalised, wards of court and those whose voices often do not get heard in decision-making forums. We work to represent those voices and ensure that they are heard so that people can have a say in what happens to them, where they live and the decisions that others are taking. We very much welcome the abolishment of that system as we move towards full implementation of the Assisted Decision-Making (Capacity) Act .

With regard to other areas, such as employment and parenting with a disability, we also provide quite complex support to those who are navigating the social care system when their children may be taken into care, they are attending court and there are care proceedings. We support people's access to justice, ensuring equal opportunity and fair process, ensuring that people understand and have support. Significant improvement can be made in the area of accessibility and access to services. There is a distinct issue in how Ireland currently defines disability with regard to HSE service provision. We need to move more towards the definition of disability with regard to how people access services. It is really encouraging to hear Mr. Broadhead explain that in the Australian system, the definition of advocacy that applies in terms of accessing services is that broader piece, and it is not based on assessment that we see here in HSE services, with the distinction between mild and moderate disability defining whether individuals can access services. There are so many obstacles that people face on a day-to-day basis to access their basic rights and services, to have their voices heard and to live quality lives. We must come back to the fact that it is not just about receiving a service; it is about having a good life. Everything that the advocacy service does right across all of those issues that we have just described is about supporting people to live lives of their choosing where it matters, with access to home supports, PA support and community services, and ensuring that they can build capacity and have the opportunities that everybody else has. There is a big gap there still.