Ms Gillian Kearns:

I will address the transfer of the disability Ministry. I will speak personally and not as a member of the group. I am a parent and my child is also autistic. I referred my child to services when at the age of four. My child is now nearly nine. The child has been seen by zero professionals. They were aged out of the early intervention service. We have had to fight. We had to pay privately to seek a diagnosis, which we got. My child was obviously autistic. At no point has anybody met my child. They have decided that as she is coping fine in school, what do they need to do? That is the story for many people. While I empathise completely with what Mr. Doyle, Mr. McLoughlin and Ms Mullan were saying about being parents of children who are autistic or have intellectual disabilities, there seemed to be very limited understanding of the number of us who are also autistic and the impact that has on our ability to do the same fighting. We have additional difficulties in that regard. Diagnoses actually talk about our difficulties with social communication although I would prefer to call them differences in social communication. Many of us have co-occurring mental health conditions and chronic fatigue conditions. We are having to fight as well, on top of trying to live our day-to-day lives.

Transferring to a disability Ministry sounds very good and effective. My concern, like what is happening in progressing disability services, is that at present, waiting lists in Waterford are in the multiples of thousands. We have all received a letter stating that our children have been transferred. Absolutely no timeline has been provided for when any child will be met. Multiple roles are not filled. People were seconded during the pandemic and have not returned. This needs to be given teeth and weight. It cannot be another way of pushing everything down the line and a child again goes to the end of yet another waiting list until the parents just give up.

My family is in debt because we had to pay for private services. It was very expensive. We were greeted with people telling us we just bought the diagnosis anyway, which is not helpful. If this is transferred to a new Ministry, it must not become another way to kick the ball down the line, if that makes sense.