Norma Foley (Kerry, Fianna Fail)

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 This includes individuals who have withdrawn, are inactive, have insufficient funding for a meaningful personalised budget or are on hold pending recruitment of liaison officers.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.