Dr. Joanne McCarthy:

It is becoming increasingly difficult to secure funding to do this sort of work. I spoke earlier about the 85% of HSE funding that is going into disability services. Of the other 15%, approximately 10% - or much of it - relates to information and advocacy work to help raise awareness of particular conditions and the similarities across conditions. However, the HSE, the funder in question, is increasingly stating that funding awareness campaigns is not its business and its role is to fund core disability services. The part of the HSE that helps promotion does not consider disability to be part of its responsibility because disability is done through the disability or neurological arms of the organisation.

Valuing the knowledge base of all of these organisations, their link with Europe and the information services they provide to families in crisis at any particular point and having that embedded in a real funding stream can make a significant difference to the lives of individuals and families in the community. I thank Deputy Durkan for raising the matter because the value of the role played by the various organisations is underappreciated and nobody wants to fund that role. It is something we must look at.