Oireachtas Joint and Select Committees

Thursday, 9 December 2021

Joint Oireachtas Committee on Disability Matters

Aligning disability services with the UNCRPD and considering the future system and innovation: Discussion (Resumed)

Ms Joanne Condon:

I want to pick up on the Deputy's comments on the resourcing of advocacy. We know from the disability capacity review the increase that is coming in the population of people with disabilities. In that context, the role of independent advocacy is essential. It is essential that it should be adequately resourced and essential it should be adequately promoted and facilitated right across the spectrum of supports and services that are being discussed today.

With regard to the people we support, particularly those who may not be able to voice their own experiences, we have a remit to work with those who may lack natural supports or may not be able to verbally share their own lived experiences. Advocacy plays a particularly significant role in representing the lived experience of those people who are still living in congregated settings or inappropriate placements, such as nursing homes for those who are under 65. It is essential to highlight the role of the assisted decision-making legislation, particularly around supported decision-making supports for such people. It is not only advocacy that will play a significant role in giving voice to those people's experiences and the lack of quality of life, the lack of access to community and the lack of access to appropriate therapeutic supports that many of those people experience, and the impact it has on their life, but also the support that people will need once options become available, such as personalised budgets and options within the community. Many of the people who have lived in institutional settings for up to 30 or 40 years have never experienced choice and have never experienced options. They need to be given appropriate supports in line with the supported decision-making set out in the UNCRPD and the assisted decision-making Act to be empowered to be able to make informed decisions of their own free will by sampling and by being afforded appropriate time. It is very important to recognise, in the context of all of the discussion we are having about the future of services, the important role of hearing the voices of those who often do not get heard.