Seán Canney (Galway East, Independent) | Oireachtas source

I thank Deputy Tully for bringing forward this important motion. As members of the Joint Committee on Disability Matters, she and I have heard at first hand the experiences of witnesses who have come in over the past two years, including parents of children who gave harrowing accounts of what they have to endure when they discover their child has a disability or special needs.

As a Deputy representing Galway East, I have had many parents in contact with me over the past six years, or since I was first honoured to be elected to the Dáil, to relate the same experience.

Parents first need time to adjust to the fact that their child might have a disability or special need. It is a traumatic experience no matter what else happens. The next stage is parents' realisation, as they get involved in the whole process, that they must fight tooth and nail for everything their child gets. They have to fill out forms repeatedly and prove time and again that their child has a special need. They try to get the services their child needs and deserves. The initial assessment, assessment of need and pathway going forward are all in a fog. The parents do not know where they are going. They cannot see where they are going, and no caseworker is available to them to bring them through the process and engage on an ongoing basis. The problem I hear in my office is that families may be waiting for six, eight or 12 months without getting a phone call or email back. They may be waiting for an assessment or therapy, and it is all so stressful.

With regard to the disability network teams that were set up, I still hear they are in the process of being reconfigured and all this kind of thing. It is not good when you hear this. It is as if the whole plan has been changed. All of a sudden, people must learn how to deal with one another within the services. It is important that every parent would have a caseworker to deal with their child from A to Z and bring them through the process. These are not very technical matters. It is about communicating in the first instance. Second, it is about giving feedback and guidance to parents.

The biggest problem we have, which the Minister of State knows well, is that we do not have enough consultants, assessors and therapists in the various fields of care in which they are needed. Throwing money at it will not work. We need to start training people and encouraging more people to come back home to take up the positions.

There are many children with complex needs. They need more help, guidance and advice. Sometimes we set up systems that deal with everybody in the same way. Children's special needs do not all manifest in the same way, nor can their needs be assessed in the same way. We are talking about individuals. They are our citizens and we need to treat them equally.

As we all know and have heard, early intervention is essential. However, if you have to wait for six, eight or nine months to get an assessment, that is not early intervention; rather, it is the cause of six, eight or nine months of hardship and mental anguish for parents. They must look at their child waiting to get a service they are not getting.

Every parent prays for their child to get the best of everything they deserve. Parents with a child with a disability, more than anyone else, want to ensure that child gets the best services and what he or she needs in terms of therapy, guidance and all that goes with that.

The biggest fear of parents is what will happen to their child when they pass away. They start worrying about it the day the child is born. They feel that if the child does not get the early intervention and services, he or she will be worse off when they pass away. They have a duty, but, as a State, we have a duty also. Regardless of what talking we do, we must act immediately to help the children.

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