Dr. Joanne McCarthy:

On the data deficit, there were two databases in place on disability, housed under the Health Research Board, HRB, which have recently been amalgamated into a single database. One was physical sensory-neurological and the other was intellectual disability. It is commonly held that the intellectual disability database probably captures the health needs in terms of planning for services well enough; these would often mean disability-specific services. Also, because of the voluntary nature of the enrolment, there is a huge problem in the physical, sensory and neurological data. Resources were put into the HSE to support the ongoing enrolment in physical, sensory and neurological but that fell away. The data in that area is not reliable.

The data on intellectual disability is reliable but one has to ask what kind of questions are being asked. The questions one asks brings about certain answers. That is where most of the disability data is being housed.

The Disability Act was never enacted nor was the assessment of need beyond a certain age on children. That had the potential to be a great source of information in identifying the levels of unmet need for people with disabilities generally. As that has not been enacted, that information is missing. Deputy O'Brien is correct that there is a significant deficit in the data being captured on people with disabilities. The personal assistant service, PA, is a perfect example. For those who are familiar with the Disability Federation of Ireland, DFI, we usually brand our work around supporting people to participate in the community, we are about enabling individuals and communities for people to participate and be equal citizens. We see, as would the Irish Wheelchair Association, PA as being the cornerstone for that because it enables and supports people out into work, socialising, the gym, and all the things that we take for granted. However, there has been no systematic data gathering around the level of unmet need on PA. It is very hard to plan for a service when the level of need is not fully appreciated. The identification of real data which is tangible and can be built upon would be hugely beneficial.