Tom Clonan (Independent)
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I thank the Chairperson. Will the Minister of State, Deputy Rabbitte, be here?

Erin McGreehan (Fianna Fail)
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No.

Tom Clonan (Independent)
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I was informed that the Minister of State, Deputy Rabbitte, would take this Commencement matter.

Colm Burke (Cork North Central, Fine Gael)
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I am taking it.

Tom Clonan (Independent)
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Does the Minister of State, Deputy Burke, have a response?

Colm Burke (Cork North Central, Fine Gael)
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I do.

Tom Clonan (Independent)
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Apologies. Can we start the clock now? I am here to speak about the despicable practice by HSE disability service managers who are refusing to allow disabled citizens to avail of independent enablers - the Minister of State, Deputy Rabbitte, calls them "enablers" - to allow them to have autonomy and choice in personal assistance.

I have two examples in CHO 6, where this seems to be a particular problem. In the case of one family, their son went to London in 2019 and suffered a traumatic brain injury. He was returned to them during Covid-19 and has no personal assistance. He is 29. He went to London with his whole life ahead of him and returned with a traumatic brain injury. Unlike the support and assistance he got with the UK National Health Service, there is nothing for him here. Therefore, he is at home with a traumatic brain injury, with his parents. There is funding for 40 hours a week.The disability service manager in CHO 6, which includes Dún Laoghaire-Rathdown, on her own cognisance, says he cannot use an independent enabler and must use an aged healthcare provider, like Rehab, for example, which is completely inappropriate to his needs.

At a meeting last May, the Minister of State, Deputy Rabbitte, instructed the HSE to facilitate disabled citizens in this way, but I am getting increasing correspondence from disabled citizens all around the country whose disability services managers are saying, in an idiosyncratic and capricious manner, that they cannot use X service and must use a service of the manager's choosing. This is the result of a charity-based model of disability. I am sure my guests from Germany will be shocked to hear this because, in Germany, there is a rights-based approach to the provision of independent supports for disabled citizens.

I have another case, that of Lisa Domican, who was here for the previous Commencement matter. I am disappointed to note that, yet again, the Minister for Health, Deputy Donnelly, has failed to turn up here to give an explanation or answer. Lisa has two children, Grace, who is 24, and Liam, who is 26, both of whom suffer from autism, epilepsy, PMDD, and anxiety disorder. They are at home with no supports or care and the HSE will not allow Lisa to use an independent enabler so that they can have their own autonomy and independence.

I also got a letter from a beautiful lady whom I will call Bláithín because I do not want to give her real name. She is 86 and her husband, who uses a rollator, is 88. Their daughter got a brain tumour in 1970 when she was three years old and they have no supports. Bláithín tells me in this letter - Members can see her beautiful handwriting - that she got cancer two years ago and is just recovering. She is not supposed to lift anything, but in the wonderful Ireland of 2024, she is expected to lift her 58-year-old daughter out of her wheelchair and into bed every day. Yet again, there is funding in place, provided by people like the Minister, Deputy Rabbitte, but the HSE refuses to allow Bláithín and her family to use an enabling broker to get an independent personal assistant service. Imagine an 88-year-old man on a rollator and his 86-year-old wife, who is a cancer survivor, being expected to lift their 58-year-old daughter in and out of bed. I am ashamed of what is happening in this country. This is happening despite the care referendum, when more than 1.2 million Irish people voted to have independent supports, outside of the family, for disabled citizens.

Why are HSE managers bullying families throughout the country in this way? Why are they bullying disabled citizens and being allowed to get away with it, despite the explicit instruction of the Minister of State, Deputy Rabbitte, and the Minister, Deputy Donnelly that this be otherwise and that citizens would have a rights-based, independent, autonomous set of supports?

Colm Burke (Cork North Central, Fine Gael)
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I thank Senator Clonan for raising this important matter today, which I am taking on behalf of the Minister of State, Deputy Rabbitte. The personal assistant service was developed to provide a service for adults with physical disabilities that enables them to live their lives as independently as possible and take decision-making control. Persons with a disability determine the support they need and the activities with which they need support. Typically, personal assistant services are delivered through some section 38, but mostly section 39, organisations that have service-level agreements with the HSE.

As part of the HSE-wide requirement to ensure appropriate governance arrangements that underpin the release of the funding of agencies, a governance framework for funded agencies has been developed which ensures a consistent approach in this regard. The HSE must have in place appropriate contractual arrangements, service arrangements and grant aid agreements with all agencies that have funding released to them for the provision of services, in accordance with sections 38 and 39 of the Health Act 2004 and NFR B6. The framework was established to implement the legislative provisions of the Health Act 2004 and to reflect the requirement for public accountability whereby the HSE is legally obliged to account for all public expenditure on health and personal social services. The framework seeks to provide a level of governance which links funding provided to a quantum of services and provides for these services to be linked to quality standards, with continuous monitoring to ensure equity, efficiency and the effective use of available resources.Home Care Direct Limited is a private company set up in 2012 and operates a recruitment platform for disability service users to access personal assistants - home care staff. The Minister of State, Deputy Rabbitte, met Home Care Direct in May 2023 with regard to personal assistants. At that meeting personalised budgets were also discussed as a small number of individuals are availing of personal assistant services outside the traditional service providers pathway as part of the personalised budget plan.

The pilot is trialling three different models of how personalised budgets may be accessed by people with disabilities. Model A is a person-managed fund, often referred to as a direct payment model. This payment option attracts particular legal and financial responsibilities for the individual, including administrative and employee management responsibilities. Model B is a co-managed fund with a service provider where the funding is paid directly to an existing HSE contracted service provider with services provided based on an individual's choices and decision as detailed in their personal support and spending plan. Model C is a broker-managed fund where a broker would support a person to manage their personalised budget with terms and conditions set out in a contract between the person and the broker. In practice, this model would also require a service agreement to facilitate the disbursement of funds.

Home Care Direct confirmed at that meeting that it did not wish to enter into a service-level agreement with the HSE and it was agreed that its business model fell more in line with a direct payment model.

I understand that the Senator met the HSE in February and it was confirmed that the only mechanism for the disbursement of Exchequer funds to provide a private service provider was via the service arrangement process. If Home Case Direct wishes to engage the personalised budget pilot outside of the direct payment model the Minister of State, Deputy Rabbitte, would encourage it to liaise with the HSE once again which will be happy to support it in developing documentation to ensure it meets the standard of a service arrangement.

Tom Clonan (Independent)
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thank the Minister of State. I am disappointed to note that his response really does not answer the question or meet the needs of the people who have contacted me. It is essentially not the case that direct payments can only be made through a service agreement. It is common practice in community healthcare organisations all over the country, and west of the Shannon in particular, that companies such as Home Care Direct facilitate independent supports for disabled citizens. It is not correct to say this is the only mechanism by which direct payments can be made.

I appeal to the Minister of State to impress upon Minister of State, Deputy Rabbitte, and the Minister, Deputy Donnelly, that people are in absolute crisis and it is a very easy fix. I receive correspondence, such as the letter from Bláithín, every day. I note the Minister of State seems to have rowed back on her position somewhat, where she would ask colleagues in the HSE to facilitate families. This is what we are about. We purport to support the independent human rights of disabled citizens. We had a very expensive Government campaign which said that disability rights are human rights so can we see some action on this? I appreciate the Minister of State's response and I conclude by echoing the congratulations from our fellow Senators. Comhghairdeas and well done.

Colm Burke (Cork North Central, Fine Gael)
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I thank the Senator. I, too, have come across very similar cases to those he mentioned, so I very much understand the challenges there. Finally, I thank the Senator for raising this important issue for discussion today. It is acknowledged that there are differences in the delivery of personal assistant services around the country. The Action Plan for Disability Services 2024-2026 commits to a policy review of personal assistant services in light of the UNCRPD with a working group involving key stakeholders and disabled persons' organisations. The Senator may be aware of the personal assistance review group established by the HSE. The purpose of the personal assistance, PA, review group is to develop a protocol for the eligibility and allocation of PA services based on a universally agreed definition in collaboration with the Minister of State's Department, people with disabilities and service providers.The terms of reference of the group are: to carry out a comprehensive review of current personal assistance service delivery; identification and evaluation of best practices in personal assistant services from a national and international context; an examination of the legal and regulatory framework governing personal assistance service in Ireland, identifying any gaps or areas of improvement and providing recommendations for legislative policy or changes; and a comprehensive report outlining a roadmap for the improvement and enhancement of personal assistance services. In respect of the personalised budget demonstration project, it is expected that the pilot will move towards evaluation in 2024.

I accept what the Senator is saying in that the ageing population is increasing. Within five years, there will be more than 1 million people in that cohort and we will have more challenges. Therefore, it is important that we have the correct structure in place as well.