Tom Clonan (Independent) | Oireachtas source

I bid good morning to the Minister and to all present and I thank the Minister for attending.

I am here as a member of this committee but there is also a provision of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, for parents and carers to advocate and speak to their lived experience. This is specifically catered for within the UN convention.

I am compelled, therefore, to give a little context to some of the issues raised by the Minister in order to ask the question. We are outliers in this country in Europe and are the only jurisdiction in the European Union where there is no legal obligation on the State to provide services, supports, therapies or assistance to people with disabilities; the only one.

We are the only jurisdiction in the European Union where there is no obligation on the State to provide carers, carers’ support hours, or respite. As a consequence, Ireland is the worst place in the European Union to have a disability. For shame, that is the starting point. That is where we are. We are outliers and it is shameful.

I have a young German woman, Evelyne Cynk, who is making representations to me about getting supports to attend a postgraduate course here. When she visits me in Leinster House she flies Ryanair with two personal assistants. When she was 18 she was provided with a fully accessible home and a wraparound package so that she can live an autonomous, independent and fulfilled life. When she visits me here, a team of her assistants come and stay in a hotel with her. That is what empowerment looks like. We have nothing like that here.

I have an adult son and part of the reason why I am late here this morning is because his minimal supports have failed, even though I am a Member of Oireachtas Éireann.

My colleague, Deputy Tully, spoke about regression with regard to the Progressing Disability Services for Children and Young People programme. It is not regression. Children are not being treated. There are tens of thousands of children on waiting lists for therapies because there is no legal obligation here to provide them. We have recently had an obligation to provide an assessment of need and there are even issues trying to fulfil that commitment or obligation. Once you get your assessment of need, however, your piece of paper, you may as well use it as insulation because you will not get any therapies or support here.

Deputy Ellis asked was there a danger of penalties for us not fulfilling our obligations under the UNCRPD. I will tell the committee what these penalties are. They are tens of thousands of children who are regressing, who are not being treated and as a consequence it has life-altering and life-limiting impacts on them. That is a legacy that we are going to have to come to terms with at some point in the future.

The only way we can compel the State and its agents to provide these services and supports at the moment is full ratification of the UNCRPD. My first question to the Minister is when this is going to happen. It is in the programme for Government. I heard, I believe, in “What It Says In The Papers” this morning on “Morning Ireland” that at the parliamentary party meeting, the Taoiseach apparently said that he favours an election in autumn 2024. That gives us approximately one year and six months before the summer recess to ratify the protocol fully. So I ask the Minister if it is going to happen this year or in the first six months of next year, because if it does not happen in either of those two timeslots, it is not going to happen. I ask that the Minister might answer that question when I finish speaking.

The other observation I have is on the rhetoric here about scoping and ensuring that we are in full compliance with all of the provisions of this international treaty. Really, that is nonsense because we are already in breach of the UN Universal Declaration of Human Rights. We do not provide people, for example, with shelter, which is a basic human right. Disabled citizens here are disproportionately impacted by that. There is a very high number of people sleeping in doorways on streets, who are homeless, who are disabled in this State. Perfection is the enemy of the good and I say that this argument that we must satisfy all of the legal obligations is moral legalism. It is unethical. Full ratification, in fact, would accelerate our compliance because it would oblige and make compellable the requirement for the State to upgrade its legislation. That means not waiting around, Minister. It means moral courage and leadership.

Would the Minister be prepared to speak to his Cabinet colleagues and to insist upon full ratification, irrespective of whether or not, as set out in the Minister’s opening remarks, we are in full compliance with our domestic legislation? That is a red herring. We must proceed with this and act with utmost haste because of the completely appalling conditions in which people with disabilities in this Republic live. It is completely shameful.

On the Progressing Disability Services for Children and Young People programme, we had an admission from Paul Reid, the former chief executive of the HSE, in the past year before this committee that this programme has failed. It is a failure. That was corroborated on the record here by Matt McLoughlin, the person in the HSE who, I believe, is responsible for rolling out this programme. It has failed so we have to have the same intellectual honesty which we had with the financial crash where we had the Troika coming in. We have failed.

If the Minister is going to succeed, the first thing he has to do is to address the recruitment and retention issue. We have almost 1,000 hospital consultant posts here unfilled. Our physiotherapists, occupational therapists, OTs, and speech and language therapists are going to Australia, Canada and the UK: to anywhere but here. Does the Minister know why? It is because the HSE, as has been demonstrated in research, is an environment which is not equality-friendly or a good workplace for clinicians to work in. We had a recent professor of innovation who has just resigned from the HSE who cited bullying and an unwillingness of management to allow clinicians to have the necessary change take place. It is a system which undermines medical and clinical leadership and that is why these people are leaving.

To that end I ask whose idea it is to impose the consultant contract on consultants without any further negotiation. Is it the idea of the Secretary General of the Department of Health or is it the Minister’s idea? Is that a good idea? The signal that sends to all of our young clinicians is to take it or leave it. Are we trying to attract people into the health service because that is one of the reasons why we have no therapies and supports? I ask the Minister to go back to his Cabinet colleagues to ask is this wise. Is Robert Watt going to go to Australia with this contract which he is going to impose on consultants, and ask all of our young doctors to come back? What kind of a signal is that? Does that demonstrate a genuine and sincere commitment to address the problems of bullying and the appalling working conditions?

I have a family member who is a hospital consultant and I can tell the committee of that day-to-day experience. Consultants are in on the shop floor 365 days a year, 24-7, because I have often gone up at 3 o’clock in the morning to make the consultant in our house a cup of tea when they are dealing with and heading into the hospital to be on the shop floor.

There was an absolutely disgraceful attempt over the Christmas period to seek to blame hospital consultants for the experiences which the general population are now having and that people with disabilities have been experiencing for decades.

My final question for the Minister on disabled services is that my son is there and there are no services. He has no social life and is completely isolated. When a person is pregnant and a person goes to the National Maternity Hospital, Holles Street, or the Coombe Women and Infant University Hospital, they say "congratulations" because that person is pregnant. Do they say that they have an appointment for that person in five years time? In the meantime, do they give the pregnant person a little video about childbirth, perhaps asking if there might be somebody in that person’s family circle who can cut the umbilical cord, wishing that person the "the best of luck", and that the service will see them in ten years’ time? That is what people with disabilities face. There are no services, no therapies and no treatments.

My son was so delayed in getting surgery for scoliosis that he was an anaesthetic risk. He was right down to 20% lung function. His heart was pushed into a part of his chest cavity where it should not have been. That is absolutely foreseeable, preventable and avoidable. We would not tolerate that for people on the basis of ethnicity, religion, sexual orientation or gender identity but we accept it for people on the basis of disability. The key to unlocking the beginning of this is to ratify fully the optional protocol. I urge the Minister to get this done. I want to hear from him whether it is going to be done this year or in the first six months of next year. I ask him to listen to the DPOs and the lived experience. We are in an absolute crisis. I cannot come in here in good conscience and not repeat this over and over again.

My final question was whether the Minister would consider it acceptable in maternity services that on becoming pregnant, somebody would have to wait two or three years before they got their first appointment and would be left to their own devices. If the Minister believes that is not acceptable then the situation that confronts people with disabilities is equally unacceptable. It is completely and utterly unacceptable; it is intolerable. The Minister is a person of the utmost integrity and is absolutely motivated to seek and drive the necessary change required and the same is true of the Minister of State, Deputy Rabbitte. In highlighting these issues, I do not intend for a moment for any of it to reflect on her or the Minister personally, because they are both persons of the utmost integrity who have a desire to see the necessary change. I wish the Minister the very best of luck with the portfolio and especially with progressing disability services for children. We are failing children. We know about the mother and baby homes and all that has passed before in this State with how we treat women and children - it is happening right now and we need to intervene.