Ms Teresa Mallon:

It relates to questions raised by Senator McGreehan. On behalf of the members we represent, we believe that the assisted decision-making legislation has the ability to be transformative, based on will and preference for the people we represent, once the appropriate resources, supports and education are put in place. It has the ability to realise a culture shift. It will change policy and practice on the ground and it is about building capacity of the individual. It is looking at the least restrictive approaches in relation to everything we do.

On human rights-based policy and practice, which this legislation is mainly aligned to, it is about the rights of the person and equal rights. We all have the same rights under the legislation and equal recognition in the eyes of the law. Anybody who we support and whose voice we represent deserves the same experience and treatment in life as any one of us. We welcome the presumption of capacity at all levels.

My colleague, Dr. Harnett, mentioned the impact assessment piece earlier. That is absolutely essential to be able to fully implementing the assisted decision-making legislation and ensuring the human-rights based approach that will preface the building of capacity and ensure people have good choices in life and can be active citizens within their communities.

We need to have proper supports in place for people, be they people currently living in residential services associated with disability services or people living with family members at home, and for their families and the circle of people who support them. If the impact assessment is not done properly, or it is not fully costed and the proper training in is not in place for the stakeholders, wider society and individuals, staff and families, it will not work out. We must ensure that everything that is needed happens.

We are also conscious that, over the years, many individuals with intellectual disability who chose to live more independently found that residential support placement arrangements were not available to them because the resources have not been made available. No planned resources or funding have been allocated to residential placements for many years. The capacity review that was launched a number of years ago indicated significant investment is required to make that happen.

As Mr. Dunne mentioned, many family members and carers are caring for people, some of whom have very high support needs. In terms of supports and residential placements being available, that is just not a reality. When we talk about will and preference and the full enactment of the assisted decision-making legislation, the resources need to be in place to make that happen in order that people can have their will and preference and the choices they deserve available to them, be that employment, a place to live or anything else.

I will finish on a point linked to data. We are very mindful that up to 2,000 people are still living in institutions. A national policy, A Time to Move on from Congregated Settings, was launched in 2012. At that time, approximately 4,000 people were living in institutions or, to use the more recent title, congregated settings. We still have not realised and met that target in terms of supporting people to have lives in the community, which is in line with Article 19.

The timeframe was seven years for everybody to have decongregated into the community. That has not happened and the timeframe has since been extended to 2028. That is a huge issue for individuals living in placements that are not suitable and in which people who are incompatible live together. In its 2019 annual report, HIQA stated that congregated settings significantly impacted on the quality of people's lives. There was a sense - and findings - that people were more likely to be subject to safeguarding issues and peer-to-peer assaults and were removed from their natural community and networks.

We have to be realistic about this and the State has to acknowledge that if we want to fully enact the assisted decision-making legislation, which is all about will and preference, building capacity, choices and alignment with the UNCRPD, we need to invest the funding required to make that happen at all levels in society. We need to invest in supporting families and individuals and provide the investment needed in disability services, as outlined in the capacity review and the review being done of congregated settings. The Moving In, Moving On report launched in December identified the significant increase in funding required per placement for people to move and transition into the community. All of that needs to happen to make this a reality. It could become a very good for people if the proper supports are put in place.