Alice-Mary Higgins (Independent) | Oireachtas source

However, there are certainly areas in which action can be anticipated. One of the key ones has been touched on. I refer to the scale of the move from congregated settings and the fact that there has had to be prioritisation in respect of the new residential places rather than all who need them being accommodated. The transition of those who are in situations we know to be inappropriate still seems to be happening on an incremental scale. There has been no massive move forward. That is a frustration we constantly see. Pilots are run and then programmes are rolled out incrementally instead of there being the sea change we need.

I will bundle three questions together. One relates to gaps in the service. One of the problems in the transfer is that the focus can be on transferring existing services, which may push addressing some of the gaps further down the line, which is a concern. Specific gaps highlighted to this committee involve myalgic encephalomyelitis specialists and Ehlers-Danlos syndrome. A really important issue is that of adult autism and ADHD diagnosis. There is no public pathway to get such a diagnosis. In moving the pieces that already exist about, we see that there are missing pieces. This is an opportunity to get this right. Will the Minister of State comment on those services?

I will add in two or three other pieces. I will comment on the issue of respite and something that came up when I used to work in the area with older people. It is a good practice to consider if a massive expansion of respite services is planned. I refer to the co-location of respite with day services. This can allow for a continuity of social contact and the relationships that people who occasionally use respite services may have in day services.

I will also comment on emergency respite for families. An issue that has come to my attention is that, in the same family, there may be an individual who has particular needs but another family member may have a crisis. Families have crises that are not related to the member who has a disability. There is a very long lead-in time in accessing respite which means it may not be possible to respond to an emergency need. I know of one case where one child in a family needed full-time care but another child was dying of an illness. The family could not access any emergency respite to allow the child who was dying to be at home. They were not able to balance the care. I will just mention that example if this is an area under review.

Others have spoken about the intersections with other Departments. It is clear that the Minister of State is passionate about her brief but I worry that it is still not being taken up in the same way across other Departments. In engaging around the national development plan, I was recently speaking to the Minister, Deputy Michael McGrath. We had a very good interaction on many aspects of the national development plan. However, on the area of disability, he said that I would need to engage with the Department of Health and the Department of Children, Equality, Disability, Integration and Youth. We need to really progress universal design within the large-scale infrastructure going in at the moment. The State is going to do more building in the next five to ten years but universal design is not understood as a standard we should meet in delivering infrastructure. Will the Minister of State comment on that because this is the chance to get the inclusion piece right?

On the children's disability network teams that are being set up, there is a real concern about gaps that are forming. We all know that putting a new system in place can be time-consuming but a big concern, particularly for young people, is the developmental years that are being lost. Existing supports, which may be patchy and which include supports delivered through schools, may be chipped away at or not replaced or staff within them may not be replaced because something else is coming in. That something may be better, but it is coming in two or three years down the road and these spaces may be lost.

I have commented on a load of things. I have too many bits of questions. Does the Minister of State have comments? Will she comment on the wider question of how she sees shifts pushing across other Departments? Frankly, even a supplementary budget of €200 million is very small. We need to be seeing full active inclusion reflected in the budget of every Department and in how they plan their work.