Tom Clonan (Independent)

I move: "That the Bill be now read a Second Time."

I thank the Minister for coming to the House this evening, and for meeting me in the past weeks to discuss this piece of legislation. I appreciated that engagement. I will put a context for moving this personalised budgets Bill to debate stage. Ireland is, by all objective measurements, an ableist State. That is a shameful state of affairs, as we have seen recently in the presentation that Children's Health Ireland made to the health committee and in the "RTÉ Investigates" programme on the nursing home abuse of elderly and infirm people. Any disabled citizen in this country, or person who has become infirm by way of age, road traffic collision or acquired brain injury or anyone who needs care supports is discriminated against at every turn. This Bill, along with my Disability (Miscellaneous Provisions) Bill, seeks to address and remedy the primary root causes of the ableist conditions that confront our disabled citizens. Whether it is children who cannot get surgery for scoliotic curves, children who by force majeure are being de facto sterilised through systematic and systemic neglect at Children's Health Ireland, we are outliers in European terms. This legislation brings us into line with our European partners. We are the only country in the European Union, England, Scotland, Wales and Northern Ireland that does not have rights-based legislation for disabled citizens for the supports, interventions and assistance they need. I have the Bill here, and I thank all of my colleagues in the Seanad who have co-sponsored it. Before the general election, 27 of us in this Chamber co-sponsored this Bill. That included Senators from Fianna Fáil, Fine Gael and the Green Party I am grateful to and all of my colleagues in opposition. Some of those who sponsored the Bill have been re-elected to this House, happily. I hope I can rely on their support.

I will speak of how the Bill came to be, and I have to try not to be emotional here. My only reason and motivation for seeking election and my only mandate is from our experience as a family having a disabled son. He is a beautiful young man. He is flourishing. He has just handed in his dissertation in his final year in Dublin Business School, DBS, notwithstanding all of the challenges he faces. He is partially sighted. He has a neuromuscular disease, which is progressive in nature. He is a wheelchair user, and he is always so graceful under the pressures he is confronted with. He is disabled by the State in terms of his access to education, his access to public transport and his ability to participate in the socioeconomic and cultural life of this Republic.

After I was elected, we spent two years researching this Bill, and it is based on every single initiative and policy imperative put in place by this Government and its predecessor. It goes back to 2016 when the current coalition partners were engaged in confidence and supply. It covers everything from the Towards Personalised Budgets for People with a Disability in Ireland report, to when the summary disability action plan framework 2022 to 2025 and the disability action plan 2024 to 2026 were published in December 2023 by Deputy Foley's predecessor. There is nothing in this document that is novel or new. What is novel is the fact that it is being drafted. That is based on two years' work where I got the support and assistance of a legal team from one of the largest corporate legal firms in this city - a big international firm.It gave me the use of a full team for two years to research every piece of Government policy and every aspiration our Government has set out. That is contained within modest legislation that is evidence-based. In researching, the legal team, my team and I looked at international law and policy, the UNCRPD, European law and policy, the Council of Europe and the European Social Charter, Irish law and policy, personal budget models from Australia, Canada, England, the Netherlands, New Zealand, Scotland and Sweden, and personal budget application processes in Australia, Canada, England, the Netherlands, New Zealand and Sweden. As such, this is thoroughly researched, evidence-based legislation, so I refute in advance any assertion it is ill-conceived or ill-researched. It is based on state-of-the-art international evidence and research.

I will speak directly to what the Bill provides for. As I said, it is modest legislation. Massive funding goes to disability supports and we are not suggesting an increase in that, merely that the funding go from for-profit service providers to disabled citizens themselves through the agency of the personalised budget officers referred to in sections 11A(1) to (3), inclusive. It simply says personalised budget officers appointed by the State will look at an assessment of need and a service statement and give the disabled citizen the power and autonomy to direct and control the services and supports he or she requires. This will eventually be legislated for because it is standard practice in all other jurisdictions. It empowers a disabled person to take control over his or her own life.

I will give an example. My son Eoghan, who is 23, is not allowed choose his own carers. He is not allowed choose the manner of his care or the means by which it is provided. That decision is abrogated to a civil servant who works in CHO 6. That person has chosen a care provider over which we had little or no choice. My son is 23. Over the weekend - the summer solstice, the longest, warmest weekend of the year - I was working on Saturday evening and a care provider arrived at our home at 8 p.m. and put a 23-year-old man into bed. A 23-year-old man was put into bed at 8 p.m. on the summer solstice. Do you know what he said? He asked the carer to open up the blind of his bedroom so he could see out and see people walking up and down the road. His 24-year-old brother was out for the weekend, his 21-year-old sister is working in Corfu and living her best life, his 18-year-old brother was up in the grounds of UCD playing soccer with his friends, but this 23-year-old man was put into bed. This is not the fault of the carer who came to our house, because without exception the carers who come to our house from Cameroon, Kuwait city, South Korea, Romania, Ghana and Nigeria are wonderful people. It is the model of their employment that is at fault.

How can I go home and look at my son and tell him this legislation that would give him control and direction over his life and care was rejected on the basis of an amendment that seeks to cynically delay it for 18 months? There is no logic or reason to that amendment. Do Senators know what day it will be 18 months from today, 25 June? It will be Christmas Day 2026. I appeal to Senators, especially my colleagues on the Government side of the House. Let us not be like the Grinch. Let us take our inspiration from Charles Dickens and A Christmas Carol, the most powerful social tract of the 19th century, which exhorts us to look after the most vulnerable in society, so that this evening in the Chamber, as has happened previously with legislation of mine, there might be a moment of catharsis and Senators might support my very modest countering amendment to reduce the delay from 18 months to six months. Eighteen months is such a cynical delay. As an Independent Senator, it is extremely seldom I get a Private Member's Bill in this House. It is possibly one every six months. Therefore, to even progress this legislation for amendment - and I am open to its being amended - would take me at least another six months or a year. Delaying it by 18 months effectively kills it within the lifetime of this Government, so I implore Senators to accept my countering amendment and give a shorter interregnum of six months.

Having raised Charles Dickens, I know the objection to this came from the Minister's colleagues at Cabinet and there is an ideological view among some of her colleagues there that the State should have little or no role in providing supports for disabled citizens and older people who require care. That was writ large during the referendum campaigns of last year, especially the care referendum where the Government and its legal advisers sought to give constitutional expression to the notion the family should be the primary, if not exclusive, provider of care for disabled citizens. For shame. It was to indemnify the HSE from providing financial support to people like my son. Do Members know who the primary carers are in Ireland? I mean the unpaid carers, not the paid ones. Some 99% of unpaid carers in the Republic of Ireland are women and girls - women like my daughter who, at 16, had to toilet her 18-year-old brother for lack of supports because the rest of us were out trying to pay the mortgage and working to keep afloat because life does not stop for you. Ireland is a cruel and capricious place, as an ableist state, for disabled citizens and carers. When I asked the HSE what the plan was for my son when I died, a senior social worker there asked me whether he had siblings, to which I said "Yes", and whether he had a sister, to which I said "Yes". I was then told she could look after him. That was not from 1821, but from 2021.

This Bill and my Disability (Miscellaneous Provisions) Bill seek to remedy the defects and gaps in place at the moment. It is based on all the research I set out. It is based on looking at the international models of provision. I ask the Minister to not press the amendment to delay it by 18 months to Christmas Day 2026. I ask her to accept my countering amendment to reduce that delay to Christmas 2025 and then perhaps in that spirit we can work together when her pilot project has been reviewed. We cannot wait. Care cannot wait. I do not want my son to spend another Midsummer in bed at 8 p.m. at the age of 24 or 25. We have had 20 years of this fight. It is traumatising and dehumanising. It adds moral injury to moral distress. For shame. It is completely and utterly unnecessary. We may have a Government, as the Minister's predecessor pointed out to me, that does not want to provide for the needs of disabled citizens and does not want to vindicate the fundamental human rights of disabled citizens for financial reasons, as was set out to me.The Minister's predecessor told me in a meeting at Christmas 2023 that he felt it would be irresponsible to support my legislation in that it would create a burden on the Exchequer. Some of the current Minister's Cabinet colleagues share this view because it was revealed after the referendum campaigns that the Department of public expenditure and reform and the Department of Finance were very keen to ensure disabled citizens did not have socioeconomic rights. If we are to categorise one cohort of citizens of this country on that basis, it is shameful and it is consistent with that ableist concept. Darkness is cheap and Scrooge liked it.

A Christmas Carolwas the first book I read to my children and they giggled when they heard about Tiny Tim. Eoghan said, "I'm not Tiny Tim; I'm big Tim." It would be funny if it were not so poignant.I ask the Government and my colleagues across the hall to be better than this, in the spirit of the catharsis that Scrooge had. Let us have a state that is better than his word: "He did it all, and infinitely more". To Tiny Tim, who did not die, Scrooge was a second father. Those on the Government side should step up to their responsibilities and support me in this. Let us work together to remedy the very obvious defects in this State.