Paul McAuliffe (Dublin North-West, Fianna Fail)

I thank the Minister for her statement. As Fianna Fáil spokesperson on disability, I attended a fairly powerful workshop held by the Independent Living Movement Ireland and the Dublin City Council public participation network. There were adults with all ranges of impairment. That was the word they used. They spoke about three things, namely, their freedom to make decisions, choice and labels and being defined by a label. Each of them is a person who has lived experience of disability. Interestingly, when they spoke about freedom, they also spoke about the freedom to fail and their own freedom to make mistakes that anybody has. The difference is that with many of these people, we are talking about adults but with the assessments of needs, we are talking about children, meaning all of those decisions fall on the carers of those children which in most cases are the parents.

“Disability” is such a broad term and often has become focused very much on the space of neurodiversity. If somebody had a congenital physical defect, then the parents know from the first moments that they have challenges, that they need to have a treatment plan and that there needs to be a diagnosis and the health services put in place measures to do that. The difficulty is that for some children their disability is not as obvious. It often comes about as part of development checks or suspicions or concerns of parents. Then there is a referral to CAMHS in some cases or through the schools, where teachers reinforce the concerns of parents. One of the huge difficulties with the current model is parents are just fighting for an intervention. What they want is not any technical document but a treatment pathway for their children who they know have needs.

Often, acknowledging the need in the first place is the first step. A parent told me the best and worst day they ever had was when their child received their diagnosis, because at the very least they knew the scale of the challenge ahead and they knew the mountain they were climbing. Part of the debate on the assessment of needs is the desire of the parents to crystalise the diagnosis and the needs. I reference the Taoiseach’s comments earlier on perhaps changing legislation and so on. We need to get back to a place where the diagnosis and the treatment pathway is the priority, rather than a technical document. I say that with some experience, although without the permission to define anybody in my family publicly here. One of the issues we have to deal with is that when people receive a diagnosis there are often different levels of literacy. We talk about digital literacy, but there are different levels of health literacy and sometimes parents are given a diagnosis in the coldest and most clinical of language and they have no real understanding of how they progress it. There is not a continuum of care from the moment concerns are raised to when we diagnose a condition to making an intervention to putting in place the support at preschool and primary school, despite there being lots of interventions available. Part of the difficulty we have and one of the challenges for the Minister is the putting in place of a pathway parents can easily understand so they do not feel they must advocate at every level. Parents only advocate at every level when the services are not readily available and they only advocate at every level when they do not feel they are being listened to.

I have lots of comments around the assessment of needs. One of the most startling things was that a third of therapists’ time last year was taken up by assessment of needs. As somebody who would like to see, and very directly like to see, more treatment, therapies and interventions I have to ask myself what the Department’s priority is. I ask if we can have that better pathway. If we provide a better line of sight for parents, listen to parents more and provide diagnoses we will be able to provide that better pathway and a better experience for the people who have the disability.

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