Dr. Joanne McCarthy:

I will take this question. Some of the organisations we are talking about today, including some of our member organisations, receive absolutely no funding from the State. Some of them receive 5% or 10% funding. This means there is an enforced marriage or relationship between the funding side of an organisation and the service delivery side of the organisation through the service arrangements. This is an ongoing challenge for organisations like Epilepsy Ireland. Mr. Murphy may have more to say about this.

Deputy Durkan also referred to the concept of rebuilding. Perhaps we were not clear enough. I would like to take this opportunity to restate a point that was made earlier. I do not think anybody is asking for things to go back to how they were in 2006 or 2007. Sláintecare has redefined what our expectations of a health service should be. We are asking for people to be guided by the IRG report in understanding the role and value of community-based disability service organisations as core deliverers of health services - not just disability services - that are embedded in primary care and are auxiliary resources in acute services. Fundamentally, we are not asking to go back to 2006. We are looking for a way forward that sees the value of community services as a roadmap for delivering personalised and person-centred services into the future. We are asking for them to be included in the list of essential services. I am using their language. They have to be identified in the list of essential services. They need to be costed appropriately. The State needs to be honest about what it is willing to fund in order that we all know what the quantum is.

Demographics must also be used in this context. We know that at any one time, approximately 400 families are affected by motor neurone disease. I am using them as an example because I was going through some stuff relating to them recently. The relevant organisations will not provide the names of the families or the geographical regions in question, but they will confirm that they support approximately 400 families at any one time. They can set out the percentage of those involved who are in care, the percentage of those involved who are at the early diagnosis stage, and everything in between. This allows them to plan demographically for bringing these people into the system and to ensure sufficient resources are in place to support community services as they seek to respond. These organisations are really good at being responsive, listening to what people with disabilities and their families want, and developing appropriate services at the appropriate time to support people in their own homes and communities. I suppose that is where we are looking to go. I ask Mr. Murphy to pick up on the point that was made earlier with regard to fundraising.