Ms Suzy Byrne:

First, Senator Higgins asked about access to personal assistants for those living in residential settings in order to access cultural, social and community life.

That is an issue of which NAS advocates are very much aware in the context of the work we do with the people we support. It is often difficult for people who are in the traditional disability services and living in residential settings to have people and supports available to them so that they can engage and go to concerts or the cinema or for a pint. Those are the simple things that we often discuss with people we support. We check with them what sort of access they have to their local community, what they are interested in and how they are being supported to do that.

Members may be aware of the Wasted Lives report by the Ombudsman, which considered the issue of young people living in nursing homes. Their access to personal assistant services is extremely limited. There is the whole issue of being able to stay up late. It is about going out, having different times of going to bed and different activities, not doing the same thing every week but being able to plan and do different things that are of interest.

I also highlight this issue in the context of people who are not living in residential spaces. The assistance that is currently being given to people living in their community, such as at home with their families, only takes into account personal care needs, if they get any assistance at all. It does not consider engagement in their community, social lives, work, employment, education or the assistance that might be provided to them in terms of personal assistance or other types of support. The home help service, which many disabled people had to access because of the lack of access to PAs, is limited to personal care in one's own home. For many people, it does not even help them cook meals or do light household duties. That prevents disabled people having visitors to their home because they are ashamed of the state of their home. They may not have other supports that can help them undertake daily duties in their homes that are not confined to washing or personal care. That is a significant limitation on people.

Of course, there are many people whose needs are not being met. The NAS is aware of the extent of unmet need. There are people on waiting lists or who do not even know if they can get on a waiting list. Much of the work done by NAS advocates involves connecting people to their local communities and to the HSE, making applications and advocating for them to receive supports.

As regards the Assisted Decision-Making (Capacity) Act and the optional protocol, several issues have been identified as barriers to the protocol being put in place. We support all sections of the Act being commenced as soon as possible. It is really needed so that people can appoint others to assist them to make decisions. In addition, the guiding principles are very important. They are what inform NAS, its work and the work of advocates to make sure that people are being recognised in terms of their will and preference and the decisions they wish to make. Those decisions should have been made with them, not just for them. One of the things that has been clear during Covid is that there were many people who thought they could make decisions on behalf of disabled people. I refer to the whole area of next of kin in particular. There is no status for next of kin in this country. People with disabilities have the right to be viewed as decision makers. If they need assistance in making decisions, those decisions should be made with regard to their will and preference and not their best interests. That includes their right to go out and engage, vote and take part in public life, community and social spaces, as well as in society and public life generally.

The final point I wish to make relates to the universal issue of the cost of disability. There are many people paying significant charges to live in residential care, be that in disability services or in nursing homes. That leaves them with very limited income to pay for transport costs or other things. Reference was made to mobility benefit and the fact that as the mobility allowance motorised transport grant was stopped eight years ago, there is now a generation of younger people with disabilities who have no additional support with their transport costs and that is limiting their participation under Articles 29 and 30 of the UN Convention on the Rights of Persons with Disabilities.

I will hand over to Ms Loughlin to address any points I have not covered.