Oireachtas Joint and Select Committees

Wednesday, 15 November 2023

Joint Oireachtas Committee on Disability Matters

Rights-Based Care for People with Disabilities: Discussion (Resumed)

Photo of Fiona O'LoughlinFiona O'Loughlin (Fianna Fail) | Oireachtas source

I thank Mr. Walsh, Ms Duggan and their teams for being here and for the very well-intentioned and good work that is being carried out. I also want to express concern about where we are at.

Every child about whom we are talking and who accessed the services is vulnerable. Regardless of whether they come from the most supportive family, there will be challenges, frustrations, disappointment and sadness - all of those emotions - along the way, particularly when there is a delay in accessing specialist health and social care services, diagnosis and intervention. As we all know, that can have a very negative impact on the individual's life, development, well-being and life outcomes. It is concerning that we are falling down in early diagnosis and intervention. I accept that there are vacancies. I think Mr. Walsh said there were 700 vacancies across the CDNTs. That must be taken into account, as well as deficiencies in primary care. Mr. O'Regan spoke about better-designed pathways. Every family wants and needs a better-designed pathway so they can have a one-stop shop and they know they can go to one person with a situation and be able to find a pathway. The experience I hear about from parents at the end of their tether is that they are completely lost between all of the different agencies and waiting to get a diagnosis. One mum to whom I spoke recently has a three-year-old child. While there was an assessment, it was not a formal assessment, so the minimum wait will be 18 months. The child will then be four and a half years old but they will miss out regarding aims and even what type of education placement is the best for the child. This is a parent who has researched everything and brought her child to a private therapist. The therapist said that because she did not have this, this and this done, even though it was being paid for privately, the child could not start therapy. This is a crisis in parents' lives and for siblings.

I spoke to another parent just last week. Concern was raised last week about medication and some children being overmedicated. It was the opposite in this case, involving a ten-year-old child, with the most loving parents, who was violent, unfortunately, in school and at home. The siblings are really impacted but the parents cannot get a psychiatrist. Mothers generally do know best for their children. They absolutely cannot get a psychiatrist to look at whether this ten-year-old needs medication. Those are all the frustrations families are dealing with.

I spoke about difficult situations coming across my desk. Last week, we highlighted that there are good practices and we need to talk about them more. I know the witnesses will appreciate - it is probably the same in their situation - that when a situation comes to our door, it will always be negative. The positive stories do not come to us but there are positive outcomes. We spoke about Jack earlier and how his outcome ended up being a good, positive story. We need to look at how we share best practice across all CHOs. That came out quite strongly and it is important. Will the witnesses comment on that?

Mr. Walsh spoke about getting to the point before it becomes a crisis, and about disability managers knowing in advance of a crisis situation for a family and being able to intervene at that point. I agree with that 100%. I was in a respite centre for children aged under 18 recently and one quarter of the facility was taken up by a young person whose parents come back on a regular basis because they love their child and support them. We are in a situation in which many families are denied the little bit of respite that will make all the difference. Perhaps, if that family had gotten help before, the situation I am describing could have been avoided. It is about trying to figure all of that out and a pre-emptive strike before it gets to that crisis. Will the witnesses comment on that? We are talking about scenarios of children being left in respite care.

The HIQA overview report on the inspection and regulation of children's services referenced the lack of suitable alternative provision, which meant that a few children remained in placements that were no longer appropriate in meeting their needs. Will Tusla discuss that as regards ensuring those children are in a more appropriate placement and there is a place for others? I thank the Chair. I know I went over time.

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