Ms Suzy Byrne:

I will respond to Deputy Canney on helping people make decisions. Emergency situations often lead to bad decisions being made. It is not the fault of the people making the decisions. They do not see or know the other options. The options presented to people are limited. People move to nursing homes because they do not see any other option. It might be where people are offered home help supports instead of PA or social care supports and those home help supports are limited to half an hour per day and involve limited things like helping people out of bed or preparing a meal, rather than things people really want to do like engage in their communities.

A difficulty organisations like the National Advocacy Service face is that we are not an emergency service and people find themselves in emergency situations. People do not have the information. They do not know their rights or what they can ask for. Advocates spend much of their time with people telling them they have a right to ask for something. They might not have a right to receive it, in that the Disability Act does not give people rights to receive services, but they have the right to ask for something and to say they do not want to move into a nursing home, but into the community or home to their family. People need to know they have a right to say those things and a lot of advocacy work is building people’s capacity to ask for these things and to know it is okay to ask. They get told by other people they cannot get something or something is not available, or they do not know what they could be asking for.

A difficulty with our waiting list is we are not able to meet those needs, which are complex. The inquiries we receive are growing in complexity. Our waiting lists are building. By the time we get to somebody, because we have few staff and have had no additional resources since our inception, people have often moved into a situation not of their choosing. It could be from a congregated setting into community house sharing with people they do not know or get on with, or it could be somebody from an acute hospital setting into a nursing home.

The fair deal scheme driving funding is one issue and the lack of co-ordination between hospitals and HSE disability services is another. There are two separate worlds under one organisation. Hospital settings have their own budgets, needs and understanding of how people should be supported, while the HSE, in terms of community healthcare and social care operations, is a completely different organisation.

There is little joined-up thinking between the two and decisions that are being made and how somebody is supported. All of those issues with making decisions in times of crisis and change are facing people and it is hard to find the resources to have somebody independent to provide support in doing that. It is also hard to provide those services through the advocacy service when we have growing complexity of need and urgency being placed on people to make a decision.