David Cullinane (Waterford, Sinn Fein) | Oireachtas source

I commend an Teachta Tully on tabling this motion, which gives us an opportunity to discuss this very important issue. The Minister of State would accept that parents of children with disabilities or special needs should not need to battle to get access to an assessment of need or services. In recent days an Teachta Tully and I have met hundreds of parents in person and through Zoom whose experience is one of a constant battle.

It was heartbreaking to hear parent after parent talk about how difficult it is to get an assessment, and even if they get an assessment through the standard operating procedure, they go onto a different waiting list for a multidisciplinary assessment, and very often, even after all that, their children do not get the services they need. Inclusion Ireland will be publishing the results of its survey on Thursday. We have been told the contents of that survey will confirm everything in our motion about how parents feel, the impact it has on their children and their constant battle. It is a battle to get a comprehensive assessment.

The 2005 Act made it very clear that it should be a comprehensive assessment that determines whether the child has a disability, the nature and extent of the disability, and the health and education needs of the child. In many cases this preliminary assessment does not do that. Many parents advise that assessment can take as little as 20 minutes. I have been in GP surgeries and I have been in there longer than 20 minutes. I believe it is a maximum of 90 minutes but it is much less than that. There is no way a child's disability can be determined in that timeframe. That is what advocacy organisations are telling me. AsIAm, Inclusion Ireland, the Disability Federation of Ireland and many more all confirm that is the direct experience of families.

It is a battle to get the assessment on time. This goes back to why parents are forced to take the State to court. Many of us in this House have children. Imagine having a child with a disability or special needs and being forced to take to State the court. How traumatic that would be. The State should be there for families and their children, but they are left with no choice but to take the State to court because the State is not delivering on its obligations. It is absolutely appalling.

Under the 2005 Act the Government is meant to publish at least once a year the aggregate assessment of need and the services that should be provided to children. It should be published once a year and set out the overall staff requirement. I believe that has not happened since 2009. Why is that the case even though we are being told it is happening? I know the Minister of State is talking to her officials, but that is what I have been told. Perhaps she can clarify if that has happened because we cannot get access to those reports.

Over 80% of children who are fortunate enough to have an assessment of need do not get access to any services, as shown in last year's AsIAm survey. Let us wait and see what is in Inclusion Ireland's survey on Thursday. Why should parents have that constant battle? I say this to the officials who are here, to those in the Department who are listening and to politicians in government. For once and for all we must decide we are going to do something about this and then do it.

In the first instance we need to listen to what the Ombudsman for Children said when he pointed to a number of recommendations relating to the 2005 Act. It was very strong regarding the right to an assessment of need. However, I think the standard operating procedure and what some parents quite rightly describe as a short screening is not a proper assessment. However, it is for that preliminary assessment when the six months kicks in and the clock starts ticking, not for those who go on a separate waiting list. That is not fair and rightly it seen as waiting lists within waiting lists - hidden waiting lists. That is not what we should be doing. The 2005 Act needs to be strengthened.

The Education for Persons with Special Educational Needs, EPSEN, Act also needs to be strengthened. We need a new autism strategy underpinned by legislation. We need to communicate to parents in very simple terms exactly what their child is entitled to, how the child will get access to those services, that he or she will get his or her assessment on time and that he or she has a clear service statement or assessment of need which sets out exactly what services the child is entitled to. We then need to set about trying to provide those services as best we can.

What all the advocate organisations and parents have said to me is that the critical solution to this is a proper workforce planning strategy. We need to train more therapists, including speech and language therapists, and child psychologists. We need to recruit and to retain more staff. If we do not do that, we will not address the problems and the waiting lists will get longer.

See this speech in context