Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

I thank the witnesses, particularly from the ombudsman's office, for participating today. It is important we listen to the concerns expressed. All of us meet families with such concerns regularly. Public bodies have a duty to assess unmet needs. It should not be up to the children or their families to tell the services what they need. With the Covid-19 pandemic, the past two years have been horrific for children with disabilities and their families. It is a crisis. We must acknowledge that and, if we do not, we are in trouble. To take the example of children with disabilities being cared for in the family home, more than 400 carers of children with disabilities are over the age of 80. Those are the statistics. I wonder what can we do to ensure this cannot continue to happen. I am in the community healthcare organisation, CHO, 5 area. I had better not say what I want to say because I probably should not and I must be mindful, but the communication is so poor it is unreal. When families and mothers come to me, they are at breaking point. I have contacted HSE CHO 5 and I might as well be talking to the wall because I have not got a response by way of email, a telephone call or an answer. I want to know who is accountable when I submit queries on behalf of families who are at a crisis point and to whom I cannot come back with information? Who do I need to contact when families contact me?

I was contacted by a lady yesterday who is from Carlow and her child, who was diagnosed with autism in 2019, still has not been assessed because she does not have a statement of needs and does not have access to any therapies. That mother was upset, her file was mislaid and when she attempted to lodge two formal complaints, there was nowhere to which to submit them. She said she could not complain about the system because there was nowhere to which she could lodge a complaint. If people like this mother are contacting me pointing out they are not able to complain about the system which their children are very much affected by, how will we resolve the problems? The mother in that case paid privately for an initial assessment to get her child into a crèche but had she not done that, her child would have lost out. She did not have the money to do it but she told me she had no choice other than to pay privately to get her child looked after. She told me that for almost a year while the CDNT was meant to be implemented, she still has not heard from it and now another year has passed.

I do not mean to be hard but for the past two years, families with children with disabilities have been contacting me. I do not know how we will begin to address the demand for respite services. Families are distraught about not being able to access respite services. I cannot get answers for them and I am sick trying to do so. A mother telephoned me about it again the other day. She told me she loved her child but was at breaking point. There has been no communication. If I could get one point across today, it would be the need to address the communication issue.

Another issue is access to transport. The issues involved cut across sectors. The issues with respect to education, transport, respite and assessment hit across Departments. One Department will blame another and it, in turn, will blame another one, and we cannot get an answer. I have raised this issue with the Minister of State, Deputy Rabbitte. I can say this because I work closely with her. I have complained about the system and pointed out that no officials in the Departments will come back to me with answers. If we cannot get responses, how will we fix a broken system where families are crying out for help? I am tormented over it. My nephew has Down's syndrome. I am his godmother and he is the apple of our eye . I often ask his mother what is the biggest need and she would mention Down Syndrome Ireland and being in the system. My nephew, Jamie is in the system. He is the Delta Centre in Carlow. We are blessed. We have great facilities and I can only compliment the staff there. My sister told me she has found it a nightmare to get insoles for Jamie. A child with Down's syndrome needs insoles for their feet but she has told that if she tries to get special insoles for Jamie, the hassle and the rigmarole she has to deal with is unreal.

I am on the board of the Holy Angels day care centre, which does excellent work. I compliment the hard work of the staff, particularly during the past two years. They are getting a new build. I have tried to get information from the HSE on it, and I have been working with the Minister of State, Deputy Rabbitte, on that. The only information I can get is from the Minister of State; I cannot get information from anybody else. I ask today for a contact for CHO 5, who would contact me about the different issues I am trying to find out about. People have contacted me regarding that centre and as I am on the board, I understand the difficulties they have. They are waiting for referrals and are not getting them because assessments have not been done. Technically, we have a system where many children are waiting to be referred and they are not being assessed. They cannot get into the system. It is a nightmare.

I also wish to get an update on the section 38 and section 39 agencies. I would like to get back in later. I hope the witnesses do not think I am being hard on them. However, I am working with families and children in the system and trying to help them but I cannot and it is very hard for the children and their families.