Dr. Karen Foley:

In the experience of ABI Ireland, we have worked with many people who live in a nursing home. Individuals can have a range of needs, including very low support needs. It might just be that they need their house to be adapted and then, with a little transitionary support, they can live successfully in the community. By contrast, some individuals need 24-7 support on an ongoing basis for at least a number of years, but a more individualised support.

The support package around each individual will be different depending on how that individual chooses to live, their abilities, challenges and what is meaningful for that person, including the supports in place. No one's journey looks the same and that is how it should be. I am not sure what the mechanism would be if we were to move away from the fair deal scheme. The point is that the fair deal scheme does not give any access to people who are under 65 to any supported environment other than a nursing home. That is their only option if they cannot go home.

The reasons people cannot go home can vary. Some people might simply need their houses to be adapted. Some people may be the walking wounded, that is, they do not have any physical disability but they need what we call monitoring support. They need someone to be in their vicinity 24-7 for other reasons. For example, they might be vulnerable in how they make decisions or how they manage risk in their daily environment and it might not be available from their families. It is unreasonable to expect families to assume that responsibility, to give up their lives, their jobs and other roles in their lives to assume responsibility for a family member.

If a funding stream was enabled to allow individual support needs to be assessed, those assessments should account for support to come in and do for, as it were. There may be some elements of people's support needs where they need someone to come in and do something for them, but assessments should also account for the areas of their lives in which they would like to work towards being more independent. They should also enable that. There should be a dual focus at assessment level, not only a focus on needing someone to do something for the disabled people because they are in a certain position. We must allow people some choice around the kind of environment they would like to live in and what their support structure looks like. It is hard to be more specific because everyone's journey and support needs will be matched to needs.