Disability Matters: Statements Seanad Éireann — 2026-04-22 ============================================================ Tom Clonan (IND), University of Dublin Cuirim fáilte roimh an Aire Stáit chuig an Teach. I am always struck by the statements Ministers read out when they come in here. They are full of facts and figures but, in their quantitative way, they do not really describe the objective circumstances of living for disabled citizens. Here are some facts and figures: it was 269 m long and 28.2 m wide, could travel at a speed of 24 knots, cost €7.5 billion in today's money and burned 600 tonnes of coal per day. Fantastic - the figures are like Top Trumps. It sank in two hours and 40 minutes. It was the Titanic . We are on the Titanic as a community. It started to sink significantly during the austerity years. Notwithstanding the ethical and intellectual mistakes made during the Celtic tiger, austerity was a time when successive Governments' enthusiasm for inflicting pain on the most vulnerable citizens in Irish society was seen as a virtue. We are living the dream. I was at the disability matters committee meeting this morning. It was an extraordinary meeting, involving some members of the Minister of State's party. No less than three parents and carers at the meeting expressed on the public record that they wished their children would predecease them. Think about that. We live in a society where we have parents who wish their children would die rather than face the prospect of what will happen to them when the parents die. There are 50,000 disabled men and women over the age of 25 living with elderly parents because there is no other provision for them. I could tell the Minister of State of the despair, trauma and hurt in that community. Not only do you have to grieve on the diagnosis of a disability for you child, but then you have to come to terms with the condition, whether it be an intellectual or physical disability or, in the case of my son, a neuromuscular disease. You have to cope with that but then you have to fight for every item the Minister of State listed. She mentioned respite. I have never had respite in 23 years. Myself and my wife have never gone out together on our own in 23 years. One of us has to be at home at all times with my son. I will not be here for the homeless statements tonight because I have to go home and mind my son. That is the reality: a society where parents would wish their children dead. That is on the record from three parents this morning. This is the Titanic but I do not get that sense when the National Disability Authority comes into the committee and it is all facts and figures. Everything is fine. "Everything is Awesome". We had HIQA come in and celebrate the "Time to Move On" initiative, removing disabled citizens from congregated settings. One disabled citizen who was decongregated went to a lady who wrote to me. She is 89, a cancer survivor, and her 57-year-old daughter, who is a wheelchair user, was returned to her, decongregated - hip, hip, hooray. This 89-year-old woman, a cancer survivor, has to lift her 57-year-old daughter in and out of bed and manage her behaviour because she is agitated after being taken out of the congregated setting she was used to for all her adult life. Her husband is 93 and uses a rollator. The 89-year-old lady asked the HSE for help and the HSE said one of them has to die and the other has to have a diagnosis of a terminal illness before it can provide supports. That is the experience of our community. That is what it is to be disabled in Ireland today. In the context of carers and parents who fear for the future and for what will happen after they die, one lady in Cork brought her child in extremis to the emergency department in Cork. The HSE wrote to her and told her to note that as a parent she is financially responsible for her child until they are 18. She is responsible for them financially and to accommodate them and care for them. If your child is in full-time education, you are responsible for them until they are 23 and if your child is disabled, you are responsible for them indefinitely. The State has no role in supporting disabled citizens to live dignified, autonomous, independent lives. There are 55,000 of them at home with elderly parents. What a disgrace. I get no sense of that in these statements. That letter to that woman has not been withdrawn. I am told there is no legal basis for that assertion by the HSE but it reveals a toxic culture within the care providers that see families and disabled citizens as recipients of charity and have a "You'll take what you're given" mentality. We have 29,000 children waiting for an initial psychology assessment, 25,000 children waiting for an occupational therapy assessment and 21,000 waiting for an initial speech and language therapy appointment, which is an increase of 37%. It is a system that is failing and sinking. It is one where rearranging the deckchairs will make no difference to the outcome. Speaking of letters, I wrote to the Minister of State and the Minister, Deputy Foley, during the Easter break and asked for a meeting to see if they would support my disability rights Bill. I do not think I have received even an acknowledgement of that. I checked before I came up here. In relation to the Disability Act the Minister of State intends to review, the disability matters committee carried out pre-legislative scrutiny on that. The Minister of State says it does not dilute the request for an assessment of need, which is the only right disabled citizens have in Ireland. However, it absolutely does dilute the services and supports set out because the Minister of State proposes to put in a system of triage where a grade 7 administrator in the HSE will decide what my child is entitled to or not entitled to. The Minister of State is shaking her head. She was not at all of those meetings. I was, and I can tell her that is what is there. I speak from lived experience. I am telling the Minister of State that the Government failed in its wording in the care referendum to give constitutional expression to the idea that the family was the primary, if not exclusive, agent responsible for disabled citizens’ autonomy and independence. The Government failed. Some 75% of the Irish people voted against that, the highest ever "No" vote in a referendum held in the history of the State. There will be a reckoning over this. We are coming up to the Presidency of the EU. We are outliers. We have children dying on waiting lists for surgical intervention in Children's Health Ireland. Chloe Maher died this year. Little Harvey Morrison Sherratt died for the lack of a surgical intervention that is routine in other jurisdictions, and the Minister of State tells me that everything is awesome? This is Ireland's darkest shame, and I intend to fully bring this to the attention of our European partners. We are complete outliers in European terms. We are 50 years behind Germany and its principal law. --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-04-22/debate/main Retrieved: 2026-08-14T04:54:50+00:00 Sitting date: 2026-04-22