Mark Daly (Fianna Fail)
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I welcome the Minister to the House. She is most welcome. The combined opening speeches of the proposer and seconder shall not exceed 16 minutes. All other Senators have six minutes. The Minister has 15 minutes, and the proposer has five minutes to reply.

Tom Clonan (Independent)
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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.

Mark Daly (Fianna Fail)
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Before I call the next speaker, I welcome Councillor Keith Connolly; his wife, Elaine, her parents, Bernie and Cathal, and her great aunt, Phyllis Lavin from Mayo. I hope they are enjoying their time in Leinster House, including Seanad Éireann. Keith's family can rest assured he is doing great work both here and out in the constituency.

Margaret Murphy O'Mahony (Fianna Fail)
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I move amendment No. 1:

To delete all words after "That" and substitute the following: "Seanad Éireann resolves that the Disability (Personalised Budgets) Bill 2024 be read a second time this day 18 months, to allow for the completion of a Personalised Budget Demonstrator Pilot which is expected to conclude at the end of the year."

I appreciate the opportunity to speak on this important Bill and contribute as Fianna Fáil spokesperson for disability, children and equality. Fianna Fáil welcomes this debate. We support the intention behind the Bill and the time amendment of 18 months proposed by the Minister, Deputy Foley, to ensure we proceed in a thoughtful, informed and effective manner.

This legislation seeks to amend and extend the Disability Act 2005 in a meaningful way to make it a legal obligation for the State to provide the option of a personalised budget to eligible disabled adults. This is not simply about funding; it is also about freedom, dignity and self-determination. At its heart, a personalised budget enables a person to take control of how their support needs are met. Rather than being slotted into a one-size-fits-all service package, individuals can design the support that best suits their lives, choosing who delivers their care, when it is delivered and how it is delivered. In short, it is a step towards true autonomy for disabled people in this country. That is a vision that Fianna Fáil shares.

However, we also understand the complexity of turning this vision into a reality. Ireland's current system of disability funding is rooted in a model of block grants whereby services receive funding based on the number of people they serve, not on the actual needs or preferences of the individual. We must remember that the individual is the most important person. This arrangement inevitably limits flexibility. It means that to implement personalised budgets effectively, we must unbundle the costs of services – that is, break down the funding assigned to each person and redirect it in a way that follows the individual and not the institution. This is where the promise of the personalised budget demonstrator pilot becomes so critical. Launched in 2019, this pilot program has provided a valuable testing ground. It has offered the first real chance to learn directly from participants to see what works and what does not, and to see what empowers people and what gets in the way and in their way. We are now in the final phase of evaluating that pilot, and its findings will be vital in informing a national roll-out.

Already, we know that implementing personalised budgets involves significant cultural and administrative change. For service providers, it means a shift from managing groups to supporting individuals. For families and budget holders, it means new levels of responsibility that must be backed by clear support, clear training and clear advice. For policymakers, it means careful evidence-based planning. That is why the time amendment of 18 months is not a delay but a necessity. It gives us space to digest the findings of the pilot and to develop robust structures so that when we do enshrine personalised budgets into law, we do so in a way that lasts and works.

Let us not forget the Government's clear commitment in the programme for Government to support the roll-out of personalised projects nationally. This is not a question of whether we support personalisation – we do – but of how we make it real, accessible and sustainable for thousands of individuals and their families across the country.

As spokesperson, I want to emphasise that Fianna Fáil believes deeply in the principles of equality, inclusion and choice. It believes personalised budgets offer a path forward, not just to better services but also to a more equal society where people with disabilities have the power to decide what happens in their own lives. Yes, let us proceed with ambition, but also with care. Let us build a system that works not just in theory but also in people's day-to-day reality. We support this Bill's intention and the time amendment of 18 months and we commit to working constructively with our colleagues across the House, service providers and, most of all, disabled people and their advocates to make this vision a reality. Again, we must be very conscious that the person with the disability is the main person. It is important that we never lose sight of that.

Linda Nelson Murray (Fine Gael)
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I am grateful for the opportunity to contribute to this important debate on the personalised budgets Bill on behalf of Senator Nikki Bradley and Fine Gael.

I commend those who introduced this Bill. I admire Senator Clonan's passionate advocacy. The idea that people with disabilities should have more control over the supports they receive is not radical; it is common sense and a reflection of what we have heard time and again. For people living with additional needs, choice, independence and dignity matter, just as Senator Clonan pointed out regarding what happened on the summer solstice. At its core, a personalised budget empowers individuals to decide how the support is delivered, by whom and when. That is not just a financial tool; it is a statement of trust in people's capacity to know what they need and shape their own lives. Often questions of choice and autonomy are discussed in the scope of gender, age or nationality. Rarely are these questions considered in regard to those individuals in our society living with a disability, who, as you find out when you research this, comprise about 22% of Irish people. We have seen examples abroad of where personalised budgets work, including in Australia, the Netherlands and England, among others. These models are not perfect but they have shown that, when implemented correctly, they can offer real improvements in quality of life, flexibility in care and, in many cases, better value for money. Like many of the countries in question, Ireland has ratified the UN Convention on the Rights of Persons with Disabilities, and with that comes a responsibility to work towards its goals. These include the right to independent living, in respect of which Senator Clonan is absolutely right, and self-determined support, as outlined in Article 19 of the document. This commitment is reflected in the current programme for Government. I oppose what Senator Clonan said. I think the Government is definitely taking disability seriously in the programme for Government. This Bill speaks directly to that ambition and helps to move us closer to making those rights real in people's daily lives. In Ireland, a demonstrator pilot was launched in 2019 to test this in our own context. I understand the pilot faced challenges, with Covid being the most obvious one. Two methods of budget management were tested as part of the pilot. One was a person-managed method, often referred to as direct payments, whereby moneys were paid directly to the individual. The other method was via the HSE, with individuals directing it on how their money should be utilised. The HSE's latest figures show that 302 individuals engaged with the scheme. Of these, 130 individuals are currently active, with 50 now in the final "living life" phase. These are people who are now using their budgets in real and meaningful ways, and that really does matter. I know Senator Clonan looks forward to that happening for his son.

The evaluation phase of the pilot is now under way. When concluded, it is hoped by the end of the year that it will provide the first in-depth picture of what worked, what did not work and what needs to change to make personalised budgets viable at a national scale. That evaluation is crucial and I know how desperate Senator Clonan and others are to have this for their families, but I support making sure we get this right. I also believe that we need to legislate from a place of learning, not just aspiration. We really have to get this right and we owe it to the community of people with disabilities not to fumble the execution because of haste, even if the motivation is well-intended.

The Minister has proposed an 18-month timed amendment to allow the evaluation to conclude. I suggest we do all we can, put the resources in, and see what happens and if we can get that timeframe to be a bit shorter. The Bill tethers the provision of personalised budgets to the assessment of need process, as a service statement is required for an application for a personalised budget to be made. We know the stress that process is already under. People are crying out for assessments of need at the moment. The process is already under strain. There may be tax implications associated with personalised budgets on both the HSE and service user that must be examined, so I believe that extra time is needed.

We must take time to understand all of this, but let me be clear - a delay must lead somewhere, Minister. It must be used to design a clear, ambitious and inclusive roll-out, and if the pilot shows that this model works when resourced and supported, we must act decisively to move beyond pilot status and provide people with the right of fiscal autonomy. If we are serious about reform, the voices of people with lived experience, like Tom Clonan's son, people who have navigated the pilot or who have been left waiting need to be central, not consulted after the fact. These individuals must be involved in shaping the roll-out from the start.

I fully support the intent of this Bill. I understand why some colleagues seek more time before progressing it and I am sorry that is not what Senator Clonan wants to hear, but I also hope we do not lose momentum or let this issue stall. When we talk about giving people control, dignity and agency, that is not an abstract principle. That is an absolute right and I want to be part of a Government and Legislature that makes it a reality. Go raibh maith agaibh and I apologise for my tears.

Anne Rabbitte (Fianna Fail)
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Not at all.

Pauline Tully (Sinn Fein)
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I speak in support of this Bill. I spent many engaging hours as part of the Committee on Disability Matters during the previous Government term, along with Senators Clonan and Flynn and a number of others. I engaged with the Acting Chair, Senator Rabbitte, as the then Minister of State many times on the issue of disability as well. I learned so much from the engagement with disabled people who were advocating on behalf of themselves or with advocates, perhaps family members, engaging on their behalf. The committee was very focused on the UNCRPD, which is all about rights for disabled people and disabled people being able to control and manoeuvre their own lives. We discussed many issues at that committee that affected the lives of disabled people but one thing that came through was that it was not the disability that was the issue, but the many barriers and obstacles in everyday life that were really disabling people. We spoke about supports and services for disabled people. Maybe some people were happy to a degree with what they were receiving, but many were not. I remember speaking to one father outside of the committee whose daughter had quite complex disabilities and was attending a day service in Galway. He really felt it was not addressing her needs. When he queried the provider or the HSE about getting a better day service for her, he was basically told to take it or leave it, that was what he was getting and that was what was there.

During the Covid lockdown when many services had to close and disabled people remained at home being cared for by family members, who were often aged parents, I was frequently asked about what was happening to the budget that was allocated to those people while they were unable to access the supports and services. Some services tried to engage, called out to people's houses and provided some form of service, but many did not. Whatever happened to that budget that was supposed to be allocated to a person but was not provided to him or her during that time?

Day services vary but we have such a low level of expectation for many of our disabled people, especially those with intellectual disabilities. It is often just assumed that if a child attends a special school, then he or she automatically attends a day service afterwards. We need to start looking at alternatives to somebody only going to a day service. There are many good examples of training courses out there that are operated well. Even teaching basic living skills would be very important and would engage people. During my time as a teacher, I taught students with intellectual disabilities. I have taught students with Down's syndrome who obtained a leaving certificate through a leaving certificate applied course. I then heard that they had gone on to attend a day service where they were sitting and colouring pictures. We need to look for a lot more for our citizens. People deserve more.

That is why a personalised budget will give people options. It will give them options to purchase or engage services that suit their needs. We have the personalised budget pilot and I know it is being evaluated at the moment. I sincerely hope that we receive that evaluation soon and that we can look to that to guide the way forward to providing people with a personalised budget if that is what they so choose.

There is the whole issue of personal assistance. Senator Clonan referred to the fact that a personal assistant put his son to bed at 8 o’clock on a summer's evening. I have heard similar stories of people who are dependent on a carer coming to their houses at a certain time. It is not about the person who is cared for, but the personal assistant trying to fulfil a number of appointments. A person could be put to bed at 7 o'clock or 8 o'clock in the evening and then may not get the assistance to get up out of bed until 11 o'clock the next morning. What kind of a life is that? The people themselves should have the option to engage the personal assistants who work for them and help them to get up, go to bed or to do whatever it might be, for example, go to work, shopping or socialising during the day, so that they are not tied to the hours of a carer. I know some people have been allocated personal assistance hours but the whole system for employing a personal assistant is awfully bureaucratic and very difficult for some people to manage. We need a streamlined service for personalised budgets, whether that is to employ a personal assistant or acquire other supports and services, that is easy for anyone to access and does not require a company being set up to pay the PRSI and PAYE. We need to find a system that is streamlined and a personalised budget officer and office would be the way to go about that.

I fully support the Bill and I am disappointed about a delay of 18 months.

Laura Harmon (Labour)
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I thank the Minister for engaging with us on this. I commend the Bill and support my colleague, Senator Clonan. He has been more than reasonable and fair in requesting that the delay not be 18 months but that we could look to December of this year. That should be ample time to get this in order. I do not think anyone in the Chamber should apologise for showing emotion. I think the public likes to see our public representatives have humanity. This is a deeply concerning issue that affects so many of our fellow citizens. We all may need this legislation in the future as well. I support absolutely the right to independent living and the review that is taking place. There needs to be a dedicated budget office in each regional health area to support people with disabilities. Persons with disabilities are entitled to the same rights as others, as per the UNCRPD and the European Social Charter.

This amendment to the Disability Act 2005 intends to empower disabled citizens to live autonomous and independent lives in line with EU standards. It would also take away control from the HSE and put it back into the hands of people with disability and their carers. Last week at the joint committee, Bernard Gloster, the HSE chief executive, said that personalised budgets are a brilliant concept but difficult for the HSE to achieve. He said, "...by our nature as public services, still coming from a very paternalistic approach in terms of how to care for people. That is not always the best approach, but we do it from the best place.” This Bill would allow progress it take place in this area.

It is worth noting that we are going back many years where there were promises in relation to this, and it was included in the 2016 programme for Government as well. Ireland is legally obliged under the United Nations Convention on the Rights of Persons with Disabilities, with Article 19 entitled “Living independently and being included in the community”. My colleague, Senator Tom Clonan, said previously that we are 30 years behind the European Union and all parts of the UK in respect of disability rights. I was struck today again at the disability matters committee, where the National Disability Authority confirmed that we have the widest participation gap of disability employment in Europe. We are 20% behind the average of our counterparts in Europe. It is reflected over many different areas.

This Bill is based on consultations conducted by the Government with disabled persons organisations and the disability action plan that was conducted in 2023. It will help citizens impacted by acquired brain injury and road traffic collisions, and older age cohorts. All of us could or would be affected by this at some point in our lives.

The White Paper attached to the Bill examines how this subject is approached around the world, concluding with advice on how best to protect this right to a personalised budget. I fully support my colleague, Senator Tom Clonan, on this.

Eileen Flynn (Independent)
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I rise in support of Senator Tom Clonan’s Bill. All of the Civil Engagement Group supports this very important Bill. I am here five years this week, and since Senator Clonan has entered the House, his passion and determination around equality for people with disabilities has shown and brought things to the table that many of us would not have thought of in this House.

The personalised budget means people will not be told what services they need or what services they should have. They can pick and choose for themselves. This Bill gives disabled people more power and more control over their own lives. Through the work I have done for many years with the Independent Living Movement, every person I have spoken to over the past few years who is disabled would say that having a PA and choices is very important for them. I see this Bill giving disabled people more choices.

As someone said to me in the disability matters committee many years ago, disabled people do not see themselves as being disabled. It is society that disables people with disability. I think that is true.

I know we will look at this Bill again in 18 months, but if we are any way realistic, that means the majority of the term. If we take in the recesses and the mid-term breaks, it is the majority of the term. What can we not do in the six months that Senator Clonan has proposed? Why do we have to wait 18 months to bring this Bill back to this House with the amendments? Why can we not do it in the next six months?

The biggest part of the Bill that I and people who are disabled would support is having choices. Just because you are disabled or have a disability does not mean you cannot make some choices for yourself and, in many cases, all choices. This Bill will provide that people will get to choose what services they want to attend.

I would be delighted to hear from the Minister what the difference is between the six months and the 18 months. What does she hope to do within that 18 months? Does that include recesses? Senator Clonan said it will be December of 2026, but if I am looking at the 18 months as a Dáil term, that is nearly half of our term in these Houses.

Fiona O'Loughlin (Fianna Fail)
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The Minister is welcome to the Chamber. I wish her well in her very important portfolio, with the many challenges it has.

I acknowledge and commend Senator Clonan on his Bill. I was happy to sign it. I am happy to support it. I have always been an advocate of personalised budgets. I have some personal experience also, which I bring to bear. Throughout the disability matters committee, this was something I was consistent on. I ensured it went into the Fianna Fáil manifesto. I often spoke to the Acting Chair in her previous role on it. When there are motions and Bills that can be tabled with cross-party names, it is important we can extend that to others.

The option of having a personalised budget is very important and would make a huge difference to people’s lives, with them being able to have that independence and autonomy to be able to make decisions and decide the timings on different things.

I know some people who have been part of the pilot project. It is important that was established. It has been ongoing for the past four and a half years and will be completed next December. Some have found it very good and some have found it difficult. They have found the process very cumbersome. I can understand, knowing some of the families, because how we all respond and relate to a family member with a disability is different from family to family. It depends on siblings and parents.

I have met Eoghan. He is a fine young man. I know how proud he is of Senator Clonan, and I know how proud Senator Clonan is of him. That is hugely important, as I am so proud of my brother. When I sit down to talk to my brother, I know what he would far rather wish to do as opposed to what he is doing. At the same time, he has a fulfilling life and support. I do not doubt the Senator when he talked about how he was spoken to by the HSE, that his daughter should mind his son. I am shocked anyone would say that. I genuinely have to say that is not my experience, but it is completely wrong for anyone to experience that. The Bill is important because it takes the cost of the individual from the service provider. It is hard to speak about people in terms of the cost of the individual but that comes into it because budgets and legal issues come into it. These are very complex legal situations. I have no doubt about the body of experience that Senator Clonan has in terms of advising on the Bill but I am also very conscious of the Attorney General and the legal advice he and his team give to Cabinet members regarding ensuring that the Bill is robust and fit for purpose and will deliver what it intends to do without unintended consequences and any negative impact on the rolling out of such.

I understand that service providers are nervous about this. That is not my concern. We have excellent service providers but they cater for the median, if one can talk about a median person with a physical or intellectual disability. However, we know every individual has different needs and a having a personalised budget will support the gifts and talents these individuals have. In terms of decoupling, one family I know was delighted when they were able to enter into this pilot scheme. Their daughter was very involved in the Special Olympics so they were able to devote some of that budget towards supporting the local Special Olympics club and enabling their daughter to have transport to and fro. Transport is a major issue.

The Minister has asked for a timed amendment with good reason. It is about extending the time up to the end of the pilot project and to have an appropriate assessment to see the best way forward. While I certainly support the Bill and the principle behind it, I support the timed amendment. It is there for a good reason and I do not doubt the Minister's or the Government's commitment because not alone did we get it into the manifesto, it is in the programme for Government and there is a commitment to deliver this. I can say from this side of the House that I will be holding the Government to account.

Norma Foley (Kerry, Fianna Fail)
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I am very pleased to be here to discuss personalised budgets as raised by this Private Member’s Bill. I acknowledge the very heartfelt, sincere and passionate contributions from all Senators and I know there is more to follow. I reiterate my commitment and that of this Government as set out in the programme for Government 2025 to support the roll-out of personalised budgets nationally. Personalised budgets constitute a significant measure regarding how disabled people can access and manage their support services. Rooted in the principles of self-determination, autonomy and person-centred planning, the personalised budgets approach enables disabled people to exercise greater control over their funding by tailoring services to meet their specific needs and life goals. A key strength of the personalised budget model is the enhanced autonomy and flexibility it offers. Individuals can select services that are most relevant and meaningful to them defining the quality, scope and delivery of their supports.

The personalised budget demonstrator pilot was established in 2019 with the aim of assessing the impact and understanding what is required for the sustainability of the personalised budget approach within the Irish context. Due to the impact of Covid, the pilot was delayed and two extensions were granted. In 2023, responsibility for specialist disability services transferred from the Department of Health to my Department and, with it, responsibility for the personalised budget demonstrator pilot. As part of the pilot, eligible adults were able to utilise a personalised budget to acquire or purchase specialist disability services funded by the Health Service Executive such as home support, personal assistance and respite. I acknowledge the involvement of Senator Rabbitte and her leadership in this respect. Two methods of budget management were tested as part of the pilot: a person-managed method, often referred to as direct payments, whereby funds were paid directly to the individual to pay for their services; and the co-managed method whereby funds remained with the Health Service Executive with individuals directing it on how that money should be utilised to avail of services.

To date, 302 individuals have engaged with the pilot at various stages. This includes individuals who have withdrawn, are inactive, have insufficient funding for a meaningful personalised budget or are on hold pending recruitment of liaison officers. Of that 302, there are 130 active participants, with 50 people currently in the final stage of the pilot, the Living Life phase, and therefore utilising a personalised budget. The evaluation phase of the pilot has recently commenced and is expected to be completed by year end.

Led by the National Disability Authority, the evaluation will gather data on participants’ experiences of the pilot through interviews with personalised budget holders, persons who withdrew from the pilot and those individuals at an advanced stage of the pilot process who have not yet been allocated a personalised budget. This should provide insight into the barriers and facilitators to rolling out personalised budgets on a larger scale. Most pertinently, this method of gathering data puts disabled people at the heart of the evaluation and ensures that their experiences inform the next steps in the development of an effective model for personalised budgets in Ireland.

It is important to note in this regard that a new unit that is being established within my Department will develop a comprehensive new vision and strategy for the delivery of specialist disability services in Ireland out to 2030 in alignment with the forthcoming national human rights strategy for disabled people. The work of the unit will seek to provide a blueprint in the Irish context for disability services that enable disabled people to exercise choice, autonomy and control over their lives and support independent living to the greatest possible extent while also seeking to ensure that services are efficient, effective and financially sustainable into the future. It will include examination of models where personalised budgets are used in the international context and will examine their feasibility or applicability in the Irish context incorporating the learnings from the Irish pilot.

In the context of this ongoing programme of work, the policy intent of the Disability (Personalised Budgets Bill) 2024 to further develop personalised budgets is acknowledged and welcomed. That said, it is prudent to point to the fact that there are a range of issues to be considered before giving any legal right to a form of service acquisition and funding that is being implemented on a pilot basis on a cost-neutral basis and for which there is not yet an evaluation completed. A significant amount of work is needed to consider all the potential service and other legislative changes that would be required to broaden the availability of personalised budgets. Learnings from the evaluation of the personalised budget demonstrator pilot will be crucial. They will enable evidence-based decision-making and inform next steps towards the development of an effective operational model for personalised budgets in Ireland. It is also important to note that while over 300 people engaged in some form with the pilot, only 50 remained at the point of actually utilising a personalised budget. The evaluation will be critical in helping us understand why this was the case. The work of my Department’s new unit on international models of personalised budgets is also crucial and may point to the requirement for more flexible policy solutions rather than legislative responses.

The Bill also has significant implications for current and future areas of legislation that require further consideration. The programme for Government 2025 commits to reforming the Disability Act in conjunction with stakeholders. Therefore, any amendment to the Act would, if appropriate, need to be done in the context of this crucial work aimed at reforming the Act. The impact of the Bill on the Assisted Decision-Making (Capacity) Act 2015 must also be considered in that the provisions of the Bill could create legal uncertainty and create powers not necessarily contemplated or intended to be created by the court when appointing a decision-making representative or contemplated by the relevant person when appointing a decision supporter. Additionally, there may be tax implications associated with personalised budgets on the service user that must be examined and ameliorated under the law before further consideration can be given to putting personalised budgets on a statutory footing. The broadness of the scope of the Bill is another matter that requires due consideration. The Bill provides for the utilisation of a personalised budget for clinical services, mental health services and education services, including services for children. This is a significant expansion of the scope of the personalised budgets demonstrator pilot. Further work would need to be done with the HSE and relevant Departments to assess the feasibility and suitability of a personalised budgets model that encompassed these additional services.

It is important that we remember that personalised budgets shift responsibility for the organisation of care and support from the service provider to the users themselves. This can be positive and in line with person-centred provision, with will and preference addressed. However, putting personalised budgets on a statutory footing also requires putting appropriate safeguards in place for the benefit of the service user.

I am acutely aware of the importance of personalised budgets for those who wish to avail of them. Personalised budgets enable people to tailor their services to support them in a way that they deem most suitable for their needs, and I am committed to continuing to support the roll-out of personalised budgets nationally. However, in light of the considerations that I have set out today, the Government has agreed to a timed amendment of 18 months for this Private Members’ Bill.

I thank Senator Clonan and all the other Senators for their work on the Bill. Collaboration and co-operation will be the hallmark of how this Government approaches the disability sector. Therefore, I look forward to working with everyone, including the Members of this House, to achieve tangible change for people with disabilities.

Anne Rabbitte (Fianna Fail)
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I am conscious that the Minister needs to leave and that the Minister of State, Deputy Hildegarde Naughton, will take over. I call Senator Boyhan.

Victor Boyhan (Independent)
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I move amendment No. 1 to amendment No. 1:

To delete “18 months” and substitute “6 months”.

I thank the Minister of State for giving us her time. She is at a disadvantage when she comes in halfway through a debate but that is not her fault. I have no doubt she has a good grasp of the legislation and that she may have been looking in from the ante room.

It is proposed that the amendment would read: “Seanad Éireann resolves that the Disability (Personalised Budgets) Bill 2024 be read a second time this day 6 months, to allow for the completion of a Personalised Budget Demonstrator Pilot which is expected to conclude at the end of the year.” I did not say it was going to conclude at the end of the year. The Minister did.

Anne Rabbitte (Fianna Fail)
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Before we go forward, I want to get the technicalities right. The Senator is proposing an amendment to amendment No. 1. Is the amendment seconded?

Joe Conway (Independent)
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I second it.

Victor Boyhan (Independent)
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We are going to share time.

Anne Rabbitte (Fianna Fail)
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Actually, we have time, so I invite the Senator to take his time.

Victor Boyhan (Independent)
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Okay. It is good to have that business out of the way.

At the outset, what can I say about Senator Tom Clonan? He is an amazing advocate. What we have seen here today is the lived experience, the man and the family that have lived with that experience of disability. I commend him. It has been a funny day for us in terms of care generally, given the earlier legislation. On the one hand, there is the Government’s concern. I do not doubt the Government's concern but there comes a time when one has to walk across the floor and stand up for what one believes is right. That is not the whip system. No whip system was ever introduced here but it has become a matter of practice in this House. This is the Upper House. We are a bicameral parliament. We are a revising chamber. Nowhere in the Constitution does it talk about a load of people sitting here in blocks of political parties. There is no provision for it. We all have to go home tonight, put our heads on our pillows and ask ourselves whether we did the right thing or whether we did what we were told to do by headquarters or at some parliamentary party meeting to keep a seat, keep ourselves in salaries and keep ourselves thinking that we are important. Now is the time to sit up, walk the walk, cross this floor and support what is a reasonable amendment. The amendment proposes a period of six months. As Senator Clonan said, we are talking about choice, independence, dignity and agency. Surely no one can make any excuses about that.

It is worth pointing out that this Bill had the support of the Independents initially and has the support of Fine Gael, Sinn Féin, Fianna Fáil, the Greens and the Labour Party. I thank all of those groups for signing up to it. Therefore, it must be somewhat frustrating for those in the Government parties to sit here and listen to the excuses given. Maybe that is why there are quite a few empty seats on that side of the House. It is not good enough. We cannot keep going out and saying that it is unfortunate. It is not unfortunate. We have it within our hand, within our grasp. Indeed, the Chair herself knows what it is like. She came in here and made many a case and experienced the difficulties and the frustration. I do not want to draw her on that because it would not be fair. However, having talked to her, I know how hard she worked. I know how difficult it is.

This is the Legislature. This is where we make legislation. This is where we put up our hands and say that we actually believe in something and we are going to see it through. So what if someone gets a slap on the hand or gets thrown out of a parliamentary party for six months? Is it better to do the right thing or to always be making the decisions of politicians or of the political party establishment?

I do not think this is unreasonable. I accept that the Minister made a good case about the pilot scheme. Indeed, Senator Murphy O’Mahony made a good case about the pilot scheme going through and the timing, which I accept. However, six months is enough, not 18 months. Let us get real. In the Minister’s own words and in the Government amendment, which is signed by Seán Kyne, a period of 18 months is proposed. However, the amendment talks about the personalised budget demonstrator pilot, which is expected to conclude at the end of the year. In the Government’s own amendment, it is accepted that this scheme will be at the end of the year. This is June. Six months is all we are asking for. I do not see any effort. If the Minister stood up and said she would reduce it to 12 months, that would be one thing, but no, it is 18 months because a group of people sitting around the Cabinet table have told us today that we have to toe the line, and that is decision.

It is about humanity. Let us not lose heart. Let us not be heartless. Let us respond to the needs of real people. To be sure, this story will be relayed in the media and politicians in government will roll up and give excuses. We cannot keep giving excuses. We have to stand in solidarity with people who need us and our support. It is incumbent on us to do that. When we look back on the work that has been done in relation to the United Nations Convention on the Rights of Persons with Disabilities, what does all of that mean if we can come in here today and proffer excuses for another 18 months? It is a very disappointing show. I will finish on that point.

I commend Senator Clonan, a champion and an advocate, who has put his head above the parapet on many occasions. I salute him for it. He will have our support on this side of the House. I wish him well. I beg and implore the Government Members to cross the House tonight and support this very reasonable amendment.

Joe Conway (Independent)
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I will not detain the House long but I have a few impassioned remarks to make in support of the amendment and Senator Clonan. We have an old expression, san áit a bhfuil toil ann, tá slí ann. Members will all know it as, where there is a will, there is a way. There is a way here. My schoolboy Shakespeare brings me back. Senator Clonan asked whether we had it in our hearts. There were a couple of lines in Julius Caesar where there was an imploration to the citizens of Rome:

You blocks, you stones, you worse than senseless things!

O you hard hearts, you cruel men of Rome,

Knew you not Pompey?

That is the question that is before us tonight. Do we know what we are doing? Do we know what we are really engaging in when we set about this whole game that is so often part and parcel of political activity, that is this awful practice of unnecessary can-kicking down the road? This is what we have here. We hear expressions like “life is wonderful", “life is cruel” and “life is for living.” Life is for living but when talking about the disability sector and people who are labouring under a disability, and their families who are trying to support them in the best way they can, all of that time, the clock is ticking.Life is for living. Who are we in this House to put a bac on, a stop to the necessary remediation these people deserve?

I am harking back to another few lines. They are from Sir Joseph Porter in H.M.S. Pinafore:

I always voted at my party's call,

And I never thought of thinking for myself at all.

I am not for a moment saying people on the Government side are not thinking for themselves, but this must be one time they could make that leap.

Robbie Gallagher (Fianna Fail)
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I am very happy to speak briefly on this debate. I welcome the Minister of State to the House and thank her and the Minister, Deputy Foley, for their work on this area and, indeed, you, a Chathaoirligh Gníomhach, for your time as Minister of State. You were very proactive in that regard.

I thank my colleague Senator Tom Clonan sincerely for not just his work on and input into this Bill but indeed his work in this entire area. His commitment, his tireless work and his love for his son Eoghan are clear for anybody to see. All he wants is a better life and a better break for his son and for others, and I salute him for his work. Tom walks the walk each day; therefore, he has earned the right to talk about this and he is the expert in this area. That is why I was happy to support him during the previous term and put my name to this Bill, like others did. I salute him.

The aim of the Bill is something that I feel very strongly about, and something that I was happy to support back then and am equally happy to support now. I listened carefully to the contribution of the Minister, Deputy Foley, somebody whom I hold in true regard as a very sincere human being. She is very sincere in all she does. I listened carefully to her argument as to why this timed amendment should be put in place. I know it is not the result people have looked for. Others have spoken about this pilot being concluded by the end of the year - that is what the Minister said - but that is not where this work ends, unfortunately. The pilot ends but the pilot then has to be reviewed. In an ideal world, I would like this to happen within six months. Unfortunately, we do not live in an ideal world, but I certainly will press the Government on this. An 18-month amendment has been mentioned and proposed and I will support that based on the contribution of the Minister, Deputy Foley, and her reasoning as to why this cannot happen within six months. I intend, however, to hold the Government to this and make sure, like others have said, that this legislation comes through as quickly as possible for us.

Again, I thank Senator Tom Clonan and others for their work on this area. I am disappointed to say it cannot be done in six months but I accept the reasoning given by the Minister as to why that is so. For that reason I will support the amendment as proposed this evening.

Tom Clonan (Independent)
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I thank the Minister of State for coming in. I have heard nothing this evening to persuade me that there is any reason for delaying this for 18 months. I say that also in the context of a pattern emerging on the part of the Government to put a timed amendment on all legislation proposed by Opposition Members. I thought that, as a Chamber, we had a collegiality here that set us apart from the polarity we see in other parliaments, including across the water in Westminster and in Washington, and the vulgarity and the barbarity that flow from that. I have acted in absolute good faith. We have talked about expertise and legal issues. It was the top international legal firm in the city, one the Government regularly goes to for advice, that formulated this based on the Government parties' own work in the confidence-and-supply Government, in the previous coalition and to date. This legislation incorporates every single policy imperative and aspiration the Government has set out. The Minister came in here and read out a statement that, frankly, I found dispiriting in its paucity of reasoning to suggest that we must wait 18 months. In fact, everything the Minister said and all the contributions signalled the absolute imperative to make progress on this. Delaying it by 18 months is a retrograde step, and no expression of regret can make amends for one life's opportunity misused, which is what this is.

We will press this amendment to the amendment. This session is being watched by hundreds and hundreds of people in our community tonight, and my phone is filling with messages. When Members come in here and vote, they will very clearly signal where they stand on a Bill that many of them co-sponsored. This 18-month delay is not warranted, and to assert something does not make it so. It is Trumpian to simply assert something and therefore believe that that makes it so. Evidence is what makes something so. That is what separates us as a species, and that is what must distinguish us as parliamentarians in an era of untruths, non-truths and false narratives. At a time when a Cabinet colleague expressed concern about trust in politics, to present this set of arguments as set out in this three-page response, bland as it is, is simply not good enough. We will therefore press this amendment.

After all this, I must go home. Senator Gallagher, my good colleague and friend, somebody whom I admire, is right: we walk the walk. My guest in the Gallery, Katy, and I go home to a situation where we must walk the walk but, I am sorry to say, fight the fight every day, and it wears you down. We have to fight every day. It robs one of the anticipation of the future. The Minister of State was not here when I spoke about my other adult children. Where is the joy in not knowing from one day to the next who is coming or if anyone will come at all? In 20 years we have had not one day of respite. I say that to the Minister of State as a colleague here in Oireachtas Éireann - not one day. As a family, as a couple, we cannot spend time away from our son. This Bill remedies that, and it is not something I dreamed up and wrote on the back of an envelope. It is based on 20 years of experience. It is based on all the correspondence with our community of carers and disabled citizens. It is based on every single consultation that this Government, the previous Government and the confidence-and-supply Government engaged in. It is evidence-based.

We all have an opportunity to serve the people. I firmly believe that the pushback against this Bill, as indicated to me by the Minister, Deputy Foley, comes from Cabinet colleagues who have an ideological view that the State should not bear a financial burden in vindicating the rights of disabled citizens.That is wholly consistent with the fact that Ireland is an ableist State, for shame. We can do better than this. We need to do better than this. I ask my colleagues to support us and, as Senator Boyhan said, not to rely on an unethical partisan party line to inform existential action in the interests of our community. Go raibh maith agaibh.

Anne Rabbitte (Fianna Fail)
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Seeing as we have no other Senators offering contributions, we will now move on.

Mark Daly (Fianna Fail)
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When is it proposed to sit again?

Seán Kyne (Fine Gael)
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Tomorrow morning at 9.30.

Mark Daly (Fianna Fail)
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Is that agreed? Agreed.