Linda Nelson Murray (Fine Gael)

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.