Michael Moynihan (Cork North West, Fianna Fail)
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The purpose of today's meeting is to discuss inadequate personal assistance support. On behalf of the committee I welcome from the Independent Living Movement Ireland, ILMI, Mr. Damien Walshe, chief executive, Mr. Des Kenny, chairperson and Ms Shelly Gaynor, peer mentor. I also welcome from the HSE Ms Yvonne O'Neill, national director of community operations, Mr. Bernard O'Regan, head of operations, disability services, and Ms Olive Hanley, disability services in Dublin north city and county. Finally, from the ESRI I welcome Dr. Eamonn Carroll, postdoctoral research fellow and Dr. Selina McCoy, associate research professor in social research and joint education research co-ordinator.

Before we begin, I must read a note on privilege. Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any person or entity by name or in such a way as to make him or her identifiable or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. If a statement is potentially defamatory and a witness is asked to cease giving evidence, it is imperative that he or she complies with this request. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable. Members are reminded that when they are in the precincts of Leinster House, they have constitutional privilege, but this does not apply if they are not on campus. Members should not participate in this meeting if they are not on the Leinster House campus and must confirm their presence on campus before making a contribution.

I now invite Dr. McCoy to make an opening statement on behalf of the ESRI.

Dr. Selina McCoy:

I thank the committee for inviting us to present evidence on personal assistance supports in Ireland. We are drawing on a large-scale, multi-phase study on personal assistance supports in Ireland that we carried out in 2020 and 2021, with the findings published in two articles. The research was conducted as part of a joint ESRI, National Disability Authority, NDA, research programme to explore important issues facing disabled people in Ireland today.

Our research reflects on the current personal assistance structures in place and on the experiences of disabled people as they negotiate and engage with personal assistance services that are intended to support their independent living. It draws on a two-stage multi-method study with both institutional stakeholders involved in service provision and disabled people using personal assistance services. As the research developed, it increasingly drew on a capability approach, focusing on the voices, preferences and experiences of personal assistance service users and their reflections on the role of personal assistance supports in supporting the functioning they want to achieve.

In line with Irish policy, we understand a personal assistant to be someone employed by a person with a disability to enable him or her to live an independent life. The personal assistant provides assistance, at the discretion and direction of the person with the disability, thus promoting choice and control for the person with the disability to live independently. However, most personal assistants are employed by service provider organisations on behalf of service users using the funding allocated to that service user. Personal assistance has long been a key support for Irish people with physical and sensory disabilities, but prior research shows that Ireland lacks national standards for allocation, provision and data collection for evaluation of the service.

The first phase of our research considered aspects of personal assistance provision from the perspective of insiders, gathering the views and experiences of service providers and State-based institutional stakeholders regarding the personal assistance system and its challenges. Drawing on a series of qualitative interviews and a survey of HSE disability managers, the findings highlighted critical issues relating to underfunding, inadequate administrative data records and variation in allocation and provision across the country.

This variation stretches across funding arrangements, needs assessment procedures, principles of provision, accountability requirements and the working conditions of the assistants. The findings give us an understanding of likely issues facing service users in accessing and directing their personal assistance, with particular issues around the evaluation of needs and how this informs allocation.

This first phase provides a valuable backdrop to the second phase, where we address a particular gap in understanding the experiences of disabled people, completing a large-scale mixed-method study with personal assistance service users. Overall, the evidence shows satisfaction among many service users but suggests that systemic shortfalls have a clear detrimental effect on the functioning and capabilities valued by the participants regarding their ability to participate in everyday social and economic activities. The findings of this study provide valuable insights into what good personal assistance means for disabled people’s everyday lives and what Irish personal assistance service users want to see change within the system.

The evidence shows the impact of inadequate support on people’s day-to-day lives. Most of those surveyed wanted a broader range of supports, with some effectively confined to their homes due to the lack of personal assistance hours. Others were reliant on unpaid support from family and friends. As well as dissatisfaction over the number of hours, there were calls for greater control over when and for what their HSE-funded hours could be used. More positively, there was a high level of satisfaction with the quality of existing personal assistance, and especially with respondents’ current service provider and-or personal assistants. Overall, however, the survey points to a significant appetite for change among personal assistance service users and makes clear the impact of inadequate support across their lives.

As supports such as personal assistance are reformed and improved, it is vital that disabled people are meaningfully included in the design and evaluation of services they rely on. The research sought to model this approach by involving disabled people in the design of the study through an advisory group. The research highlights aspects of personal assistance, existing or potential, particularly valued by service users. Having a personal assistant, PA, was felt by many to be necessary to enter and succeed in employment and education. Indeed, earlier ESRI research shows Ireland has one of the lowest levels of employment among disabled people across the EU. Currently, however, PA hours are not widely used for either employment or education. This was partly a result of explicit direction from some service providers, and from the HSE in some areas, that PA hours could not be used for employment, partly due to an overall shortage of hours and partly due to issues finding PAs with the skills needed in the workplace or learning environment.

Insufficient hours were a huge barrier to social engagement, leaving many respondents isolated. When asked about what else they would like supports for, respondents mentioned things most people take for granted, such as trips to the cinema, shops or a café. In particular, leaving the house for events during the evening or at weekends was not possible for many. The relationship with the personal assistant was central to respondents’ perceptions of personal assistance. Managing the personal and professional relationship was challenging, but when it worked it was immensely rewarding. Personal assistants’ working conditions, especially their pay, hours and lack of progression opportunities, indirectly impacted service users as they made it difficult to hire and retain suitable people.

This research shows the importance of adequate and effective personal assistance for disabled people’s quality of life. Disabled people face much worse outcomes than non-disabled people across a range of areas, such as employment, education and social engagement, and supports like personal assistance can help tackle that gap. At present, however, the supports do not go far enough to allow most service users to live a full and independent life.

Ms Shelly Gaynor:

I thank the committee for having me as a presenter, along with my colleagues, Mr Walshe and Mr. Kenny. Irish disabled people were one of the first users of a personal assistance service, PAS, in Europe, yet more than 30 years later, we are one of the few EU countries where disabled people do not have a right to this service. Independent Living Movement Ireland’s vision, as a cross-impairment disabled person’s organisation, is an Ireland where disabled persons have freedom and self-determination over all aspects of their lives to participate fully in an inclusive society. We believe a right to a PAS for disabled people is fundamental to achieving that vision. A right to a PAS, among other issues such as true representation, inclusive participation and real accessibility, is fundamental for disability equality to be achieved in the State.

I will define what a PAS is. A PA is hired to assist us with a range of day-to-day tasks that we cannot physically do for ourselves. Many of us say PAs are the “extension of our limbs” and they are “our eyes and ears”. With PAS we are in control and direct the PA to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising. A PA does not “look after” or “care for” us. We delegate these tasks to our PAs and in doing so take back control of our lives. A distinct benefit of a PA is that it reduces our dependency on family and friends. I will hand over to Mr. Kenny.

Mr. Damien Walshe:

I thank Ms Gaynor. The personal assistance service is a central component of independent living. Disabled activists in Ireland were one of the first group of disabled people to successfully push and fight for a PAS, and many hundreds of disabled people have led real and productive lives by using this basic tenet of modern social democracy. It has proven cost-effective, liberating and a real marker of social justice for disabled people who need the service.

However, disconcertingly, Ireland does not give disabled people the subjective right to a PAS if they require one. The PAS budget is still combined with the overall home care budget, and there is no standard definition of what a PA is across the community healthcare organisation, CHO, areas and no standard assessment of need. As we witnessed in 2012, there is no commitment to giving us a right to this service and it can be taken away immediately. When we consider the massive social and economically positive outcomes of having a PAS, as the ESRI study mentioned, it begs the question why these issues have not been resolved. For more than 30 years, there have been campaigning, struggles and challenges to the PAS. All the time, these predicaments met with resistance and tenacity from disabled activists, yet still the sword of Damocles perpetually hangs over us.

Despite ILMI and our allies’ continual push for legislation, regulation and definition, successive governments have not meaningfully engaged with the issues. We welcome the research conducted by the ESRI, which aligns with our own research and policies that are informed and led by the wider disability collective. Through a nationwide consultation with our members, it is clear that some service providers are moving away from the original ideal started by disabled activists in 1992. This successful model was based on disabled people directing our PAS to enable us to live full lives of self-determination. Many feel the PAS is moving towards a system focused on compliance, regulation and bureaucracy.

ILMI has been running a campaign, PAS NOW, for investing in and creating a system of personal assistance that meets the needs of disabled people. Our campaign has been about five actions required to address the deficiencies that have been slowly but persistently occurring within the PAS. To do this, we need to have an agreed definition of the PAS that places us at the centre of any service provided and is directed by us to meet our need to live independent lives, separated from home help and home care, with its own ring-fenced budget. We need to standardise how the need for a PAS is assessed and ensure there are no barriers to disabled people moving from one area to another for work, education or social reasons.

We need to see a budgetary increase in the budget year on year for personal assistance, which can be achieved by redirecting funds from services that do not support the inclusion of disabled people in society. We need personal assistance to be promoted so that disabled people who could benefit from support are aware that it is available. We need to introduce legislation to guarantee us the right to a personal assistance service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities.

The PAS budget is a tiny fraction of the overall HSE budget and a minuscule amount of the billions spent on disability services but the effects it has, in most cases, are life-changing. Ireland is not living up to its ideals of a modern social democracy. It is not treating all its citizens equally, and it is not upholding the fundamental ideals of the UNCRPD, which it has signed. Every local authority in the State has supported our call for a right to personal assistance. That is democracy.

Because of the lack of clarity in relation to personal assistance services, we are now seeing several issues. Service providers have moved away from the initial ethos of the service and it is being more and more aligned to a care role; with disabled people being less involved in the selection, rota or management of their service. Similarly, there is a challenge about personal assistant, PA, recruitment and retention. These issues are rooted in the lack of a legal right to personal assistance. In this vacuum, there is no standard training programme for PAs nor is there any regular assessment of the services.

One example is the lack of continuity for young disabled people who may have a PA in third level education, but once they leave education they are either told to reapply or that there are no PA hours available. It seems that we are often giving young disabled people a taste of independence and then removing it from them.

Mr. Desmond Kenny:

For clarity, there are currently just over 2,000 users of PAs in Ireland, not hundreds of thousands of disabled people. Many do not receive the hours they need to live the lives of their choosing. Many more disabled people, regardless of impairment, could benefit from some support both inside and outside their homes to live the lives of their choosing.

This is not a significant strain on the Exchequer or society. Indeed, it is the opposite; it is central to enabling many disabled people to live lives and not just survive. Ireland wants to be a paragon of modern social equality, forward-thinking and open. Then let us start here. We hear at a statutory level of a commitment to a rights-based, social model approach to disability, of moving away from a charity and medical model. Investing, standardising and legislation for PAS is fundamental to that approach. We do not need to reinvent the wheel; we can see how other EU countries of a similar size and social values do it properly. This is not a new issue, it is three decades in the making, and if this Government, or the next, wants to be genuinely committed to equality, than this needs to be addressed as a priority to realise disabled people’s rights under our commitments in the UNCRPD.

Ms Yvonne O'Neill:

I am joined today by my colleague, Ms Olive Hanley, head of disability services in CHO area 9, that is Dublin north, Dublin north central and Dublin north west. Unfortunately, Mr.Bernard O’Regan, has had to send his apologies after becoming unwell this morning. Mr. O'Regan has appeared before the committee before and he regrets being unable to attend.

The HSE provides a range of assisted living services including personal assistant and home support services to support individuals to maximise their capacity to live full and independent lives.

Pioneered 30 years ago in Ireland, personal assistance is to support a person with a disability to maximise his or her independence, to live in communities and to access community facilities. The home support service separately provides domestic or personal care inputs or both at regular intervals. Temporary relief is offered to the carer by providing a trained, reliable care attendant to look after the needs of the person with the disability.

A vital element of PAS is the full involvement of the individual in planning and agreeing the type of, and the times when, support is provided to them. It aligns with the UNCRPD, which emphasises the right of disabled people to live where and with whom they wish in the community; to self-determination; to exert control over their life; to have opportunities to make decisions and take responsibility; and to pursue activities of their choosing, regardless of disability.

The HSE is progressing a new working group to address common definition and consistency in assessment of, and access to, PAS. Terms of reference and proposed membership are being finalised, with work commencing in April 2023 and the group will have its work completed by December 2023. Progress on these issues, which was planned in 2019 in line with Sláintecare and the UNCRPD, was unfortunately impacted by the onset of Covid. It is now further supported by specific findings in the Ombudsman's report, Wasted Lives, from 2021, which highlighted the lack of consistency in how people access PA services. The working group, which will include representatives of the primary stakeholders, including disabled people, will develop a model of service, scope and access criteria that will feed into the Department of Children, Equality, Disability, Integration and Youth's draft action plan for disability services from 2023 to 2026, and into the policy development in this area.

Currently, each CHO has a process to manage applications and referrals for PA services. People's needs are assessed against the criteria for prioritisation. Resource allocation is determined by the needs of the individual, prioritisation criteria and the level of resources available. The number of hours granted is determined by the available resources and other support services already provided to the person. An individual’s PA hours may be adjusted following service reviews where service demand can result in one individual’s service being reduced in order to address priority needs of other people with disabilities within that community. While there is no centrally maintained waiting list for PA services, the local HSE CHO areas are aware of the needs in their respective areas and work with the local service providers to respond within the resources available.

The national service plan, NSP, for 2023 provides for almost 2,700 people to be provided with almost 1.8 million PA hours, which in the main are being provided through a range of voluntary service providers. The current level of service, through welcome additional annual funding under the NSP, provided for a 15% increase in PA hours since 2020, totalling 270,000 additional hours, in line with NSP targets. In 2020, we had 40,000 additional hours, in 2021 another 40,000 additional hours, in 2022 120,000 additional hours and in 2023, we are funded for in excess of 70,000 additional hours. The level of service delivered is determined by the needs of the person and the available resources, resulting in a range of hours provided to individuals. Additionally, home support hours for people with a disability were increased by 30,000 additional hours in 2022, so that 3.3 million hours were provided to more than 7,000 people that year.

The HSE has contributed to the development by the Government of the 2020 capacity review of the disability sector and the draft disability action plan for 2023 to 2026. These set out the future service needs and how they might be addressed. They incorporate the dual development goals to increase the range of hours available to individuals already in receipt of PA support and increase the hours available to make the service available to more people . While many individuals are adequately provided for by their current level of support, it is acknowledged that many would benefit from more support hours, should additional resources be made available.

The HSE welcomes the ESRI research bulletin, Personal Assistance Services in Ireland: A Capability Approach to Understanding the Lived Experience of Disabled People. It adds to the understanding of how personal assistance is allocated and used across the services provided and funded by the HSE. It sets out the importance of this support to people with a disability living an independent life and in supporting them to participate in community life as an equal. The report also describes the inconsistencies experienced by disabled people in accessing personal assistance supports and the limitations in how those supports might be used.

The report will be used by the working group to improve this important service, as well as making a valuable contribution to the service planning process. It will also contribute to the consideration of appropriate regulation of providers of personal assistance by the Department of Health and the Department of Children, Equality, Disability, Integration and Youth, aligned with the ongoing work to develop a statutory home support scheme. Increased investment by Government in recent years is welcome. The HSE will lead the work to improve how the available resource is allocated and used to provide this essential support for people to live an independent life.

Ms Yvonne O'Neill:

We are in full agreement with the Deputy on the points about the variation and better co-ordination. In fact, that is why we are motivated and had hoped to have already started this work in 2019. The variation will be minimised when we have the model of care, which brings some standardised practice to what are currently CHOs and the future regional health organisations. The better co-ordination piece is essential to the model of care and the database is also key. Unfortunately, I am at these types of forums too often, talking about our lack of information systems in the community, but we have progressed significantly this year. We got approval from the Department of Public Expenditure, National Development Plan Delivery and Reform for our integrated community management system. Understanding from the point of referral through assessment and the type of allocation of hours and review will be critical.

Over-65s will be an important part of the future model of care. If somebody who is in receipt of hours turns 65, in practice, at local level, the hours are not taken away based on the age. There are a range of reviews, depending on the change of circumstance of the individual. This does not undermine the point the Deputy is making, which is right, in that a person over 65 starting the process will be disadvantaged. We should address that in the model of care.

Ms Hanley may wish to answer on some of the other issues with regard to night-time hours and flexibility. Employment is of equal concern to us. Some of our experience in the feedback we are getting, both with regard to personalised budgets and personal assistants, is often around having the right skilled people. This has also come up, rightly so, with regard to skilled and trained staff. I ask Ms Hanley to speak about this. She is also the head of service in the Deputy's area.

Ms Olive Hanley:

When somebody reaches 65, locally, we would rarely reduce personal service in a number of the CHOs. There is a lack of clarity on the definition and database. In a number of cases, a mix of personal assistance might be in the home support budget or some people are accessing both. It is more difficult to start a personal assistance process over the age of 65, to be fair. It is high on the agenda for all of us to look at. Employment is low, from our local experience. I agree with the Deputy on that. The number of requests for it are also low. We have some people in full employment with personal assistants who have graduated from college. Graduation from college and the difference from the education system was referenced earlier. It is another factor that needs to form part of the terms of reference we are aware of because there is a different system through full-time education. That is the case in many different areas, not just in disability.

The Deputy referenced late-night personal assistance. We agree there may be a reliance on family or other peer supports late at night, if they exist. That may be to enhance the waking hours and promote inclusivity, enablement and engagement in the community. The CHO typically works within a resource and agrees what is best with a person. The personal assistance system can be onerous. The ESRI report and the opening statement reflected that as well as the structure around employment and the challenge with regard to employing somebody.

The delegation was spoken out, which is very important. It is the priority piece. There are many systems in place at present. I am very familiar with our own. We try to focus on the individual need.

As Ms O'Neill said, there is no generic standard national assessment tool. That is something we would like to work towards but equally, we do not want a national assessment tool that is prohibitive. Everybody is an individual and we try to look at what can meet their needs. Those tools can sometimes be prescriptive and that is probably why we do not have one to date. It is sometimes easier for all of us and allows us to prioritise. However, it is not necessarily always very person-centred, which is the focus of what we are trying to do.

Ms Shelly Gaynor:

I have been a PA user for nearly 26 years. We have heard a lot today about care. As someone who uses a PA, I do not seeing myself as being in care. I need assistance. The problem with the PA service as we know it now, 30 years after Mr. Martin Naughton and others founded the whole concept of independent living, is that it is too medical. Everyone needs to get up in the morning. Everyone should be able to have a shower.

I class myself as a leader. I know that within the report, it stated "PA users". Thirty years ago, where you used the PA service and you were disabled, you were called a "leader". Some people do not like that term, and that is their choice. I like the term "leader" because it enables me to feel I am in control of my own life. When I am supporting other disabled people within my job, I find it difficult. I have availed of the service for years. I am now getting calls from people saying the HSE is prioritising me getting up, going to bed and having a shower. Every person, whether disabled or not, should have the choice, control and freedom to do what they want. That is one of the main difficulties that we have, and that I have, as a peer mentor. I have over 100 hundred hours a week. That sounds like a lot of hours, and it is, but I know there are loads of people behind me who do not have anything near that. It makes my job very difficult to try to support them to do what they want to do if they only have ten hours a week. Disabled people have the same aims and desires as anybody else. It is difficult if someone only has ten hours a week of support or assistance, not care. There is a difference between the PA service, a legitimate, genuine and pure PA service, and care. If you are only on ten hours assistance a week and it takes you an hour to get up every day, including a shower and whatever else you need to do to get ready for the day, only three hours per week are left for everyday life. It only leaves three hours to lead a life. That is not adequate. It is disappointing and hard to deal with.

There are people I work with and support who are very well educated and have degrees galore but who cannot access employment because they are afraid they will lose their day service. That has happened and it is difficult. We definitely need a definition of "PA". I and the many people who use the PA service, and who class themselves as leaders or PA users, are not looking for care, as we said in our opening statement. We really believe that. I certainly do. PAs are an extension of arms and legs. They do things solely under my direction. I am a grown adult. I know what needs to be done. They carry out the tasks I cannot do. I am lucky in the sense that I have a direct payment so I am the legal employer and do not have to worry about service provision in that regard. However, I get phone calls from many other members and people who want access to PA services and are being told they are priority 3 as opposed to priority 1. The State and HSE need to start to looking away from the impairment and start looking at the individual. Why would somebody be deemed higher priority than me to get out of bed? Disabled people want to do and should be able to do in 2023 what their non-disabled counterparts are able to do and take for granted. That was highlighted within the report. Thirty years ago, when Mr. Martin Naughton and co. set up independent living, they wanted to have a life. Everyone should be able to get up or have a lie-in. When you are disabled, as the Deputy said, everything is on hold. In 2023, that is not good enough. There should not be competition whereby somebody else looking for hours in my area will affect me. We need standardisation of what a PA is across all CHO areas. If a contract is given to a provider, there must be a clear understanding of what that means. PA is not just a fancy term. It is not a nicer alternative to "carer". I do not need care any more than any other 43-year-old. I need political support; that does not mean care. I have my own brain, as many disabled people do. They have their own desires and wishes.

Mr. Desmond Kenny:

Ms Gaynor has said everything. Deputy Ellis could have been sitting on this side of the table as he made his contribution. The over-65s are a group in need and those people should be considered. We must also consider the dismantling of home care hours and giving them back by way of PA hours within that budget. I have heard in recent times of cases involving night care. I heard the mother of a particular individual talking about how he was terrified of moving out on his own because no PA would come in the morning to, as Ms Gaynor said, get him up and shower him. That is a terror people have. It is fear of the unknown and of the undelivered.

The HSE can talk about flexibility and mobility in reassembling the parts. Many HSE services nowadays are like using a jigsaw without a box with a picture to show you how to make it up. The plan is being made up as it goes along because of the goodwill and best ingenuity of the people on the ground. That is no longer acceptable. We need consistency in what we do. We need a schematic for it. This thing about flexibility and mobility is outside of the context of people knowing their rights, how to access them and moderate them, and have them argued for if there is any breakdown.

Dr. Eamonn Carroll:

I will follow on from what Mr. Kenny was saying about the current role of goodwill and ingenuity. There are many informal fixes in the system at the moment. When we surveyed the HSE disability managers, they were pulling all sorts of strings and contorting themselves in all sorts of different ways to get people as many hours as they could. That feeds into the CHO variation, in that what people get is not a function of them as individuals or their specific needs, but is rather a function of what can be assembled for them. It is unacceptable in a modern social democracy to have that level of variation.

A lot comes back to the individual. We interviewed disabled people who were accessing PA supports and many of them were able to supplement their initial package of hours through either following it up with the HSE, and doing so repeatedly and keeping pressure on until they got the hours they needed, or through finding other ways of accessing support. That often led to them getting the total number of hours that they needed. It tended to be those who had more resources to advocate for themselves who were able to access those supports. They were the people who had a high level of education or of personal resilience and charisma to keep fighting that fight.

We spoke to other people, maybe with an equal level of need but who did not have quite that level of sheer fight in them, who were accessing much less support. That is unacceptable.

In terms of the database, we initially set out to do in this project with the National Disability Authority, NDA, to map unmet need in Ireland. We were hoping to map both unmet need in the sense of people who were receiving a certain number of hours but needed more hours and also people who were not receiving any hours, yet the lack of that database and the lack of sufficient administrative records meant that we could not do that. It was not recorded anywhere. There was no way of accessing this data. It was all informally held within the HSE local areas but it was not put down anywhere, and there was no real way of figuring out what the unmet need was. We were able to get a sense of it from talking to the HSE and to service providers and then a sense of that first type of unmet need in people who are getting some hours but not enough, but we were not able to tap into that second type of unmet need of those who were not getting any, which is a shame because it would be great to have been able to record that, to quantify it and to give a sense of what it meant for people as well.

In terms of employment hours, we also saw the informal fix and the fudge. I will not go into the exact strategies the people were using for fear of identifying them. People were being very resourceful and ingenious in finding ways to access that support and employment when it was not necessarily available for them. What it meant was that they were able to access full or part-time employment. You could see the impact it had on their lives was massive economically, socially and personally. Moving that away from this informal ad hocpulling together and towards something that is more outlined in policy would be very valuable.

In terms of the 65 year cut-off, there were also informal fixes. The HSE mentioned there the system could sometimes be onerous. Even in that case of transitioning and continuing with PA support after 65, in some community healthcare organisation, CHO, areas it seemed to be quite straightforward but there was one interviewee we spoke to who had had to fight and fight to keep them. From speaking to this person, who was over 65 but certainly in full possession of their mental faculties, they were well able to direct their own PA support. This person was just having to continually fight to do so.

Finally, it is worth noting, on the role of the personal assistance and the assistant or support versus care role, we see a lot of people who want only support who are accessing it as a support as leaders in full charge of their hours, often fully registered as employers, and taking care of their own tax and legal obligations and everything like that. That model works for a lot of people, and especially for people in receipt of large packages of hours, but that also places a lot of responsibility on people and it is a big burden on them to manage that. From speaking to service users and from our survey, maybe it is not suitable for everyone and there are some PA service users who prefer more of a care orientation and value a more caring relationship with their personal assistant. It was important that the personal assistants were supporting them in doing the things that they wanted to do but also there was a caring element to the relationship that they valued as well. That comes back to the evaluation of need and being universalist - that everyone is getting the same evaluation but that it is individualised enough to recognise what people want and, importantly, involves the personal assistance service users in the selection of their personal assistants so that they can see whether there is a fit there in terms of the type of relationship and rapport they want to have.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Carroll. I now call Senator McGreehan.

Erin McGreehan (Fianna Fail)
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I welcome all our guests this morning. The PA campaign was one of the first issues about which I met with a former colleague of those in Independent Living Movement Ireland, Mr. James Cawley. I am sure he is sadly missed in their organisation.

I suppose the PA is a great liberator. It is the equaliser. Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRP, asks that at the core of independent living and inclusive life in community for people with disability is that the person have control over how he or she wants to live. Then we look at the reality. What the HSE outlines, and the ESRI has well outlined in its reports, is that the HSE has control of how an individual lives. That is clearly a completely inadequate service.

We now have disability services moving into the Department of Children, Equality, Disability, Integration and Youth. What we all want, and the rationale for that Department movement, is that we look towards a rights-based model and move away from the medical model when it comes to disability services. What actions is the HSE taking now to look at its services under the lens of the rights-based model because there is a new game in town now under a new Department? We have to be serious about this. The committee is working towards the ratification of the optional protocol. It should be ratified already. The HSE has to stand up and create the pathways and the reality that we look at disability services in a rights-based model. What is the HSE doing to make that real change for so many people of whom Ms Gaynor spoke?

I have a question for the ILMI. The HSE mentioned there that it does not want a standard assessment process because we need to take account of the individual and flexibility. I ask it to elaborate on that and for that contradiction to be thrashed out a little. It would be helpful.

Ms Gaynor spoke clearly about her experience of PA services. Dr. Carroll spoke about people having to fight for these. Ms Gaynor is that leader who fought and got her services and speaks about the people who are not getting the services. How do we reconcile that lack of and wish for standardisation? Everyone's needs are equal. We all have an equal need to get up in the morning, to go out to work, to travel to school, to socialise, to live. How do we reconcile those two things?

I have a question for Dr. Carroll. The PA budget is small spending in disability services. Has the HSE done a cost-benefit analysis? Is there any information on increasing the spending on PA services and the resulting reduction of costs in other parts of the services because that individual is living a fulfilled life and is able to thrive and survive?

I apologise for jumping to and fro. Going back to a rights-based model and discrimination, we see across different sections that the HSE is quite ageist. When you look at neuro-care, for example, you do not get employment support if you are over 65 in many places. There is different care. Age is a grounds for discrimination. I am wondering has a case ever been taken because it is clear that to cut off someone's opportunities at 65 seems incredibly wrong. My father is 78 and he is working full time because he wants to.

Public bodies such as the HSE have a public sector duty to reduce discrimination under the legislation that established the Irish Human Rights and Equality Commission, IHREC, and they are supposed to report every year. Has the Department or section on disabilities worked on that public sector duty to look at where it is discriminating and where it needs to reduce discrimination on age, disability and all the different grounds for discrimination?

Ms Yvonne O'Neill:

There is common agreement on what needs to be done, the approaches to it and it being rights based. We welcome the opportunity provided by disability being under the Department of Children, Equality, Disability, Integration and Youth. We can use this as a foundation stone. We have worked on the transition to that Department, which only happened on 1 March. We have worked very closely with them on the action plan associated with the capacity review, which involves a rights-based approach. We are operating to a resource limit, so we will always have to prioritise within that. We fully acknowledge that the variation is not currently visible enough to allow us to outline how we are standardising.

Ms Hanley’s point about the introduction of standardised assessment is that it should be carried out in a visible way, and that output determines access to services and may also determine the basis of prioritisation. That is the part that the working group has to deal with. This is being done with the involvement of stakeholders, including people with disabilities, in order that they can inform the process. We do have approaches across disability services and older person services around standardised assessment tools such as interRAI. We have been trialling those. Ms Hanley referred to the balance between standardised assessment and having sufficient flexibility. In addition, Mr. Kenny made a point that flexibility is not supposed assist some sort of fudge when it comes to people’s needs being met. Let us be clear about that.

The databases relating to that and to interRAI will be supported by an assessment tool. It would assist with that significantly. Returning to the database, we use the data we have in the limited databases, which we have to try. We also have to tackle some of the points Dr. Carroll made about the report on unmet need and those who we know are not in receipt of services. We use that data in our Estimates submission to the Government each year. We estimate that between 280 to 300 additional people are in need of services. Those are new people rather than individuals who are in need of additional hours but who are already in receipt of services.

The Senator mentioned funding. To be fair, the Government and the relevant Ministers have been very supportive about trying to increase the budget, which has increased from approximately €80 million in 2018 to €110 million now. That is not to say that it is sufficient. Obviously, we want to work towards PA being a model of care that supports which is exactly the point the Senator was making. We have not done the health economics type modelling yet on the money that is saved by having adequate PA services but it could be done, as part of the working group, on a demonstration basis.

IHREC was mentioned. The HSE works with IHREC and it chooses the areas they are going to look at around discrimination. We worked with it recently around interpretive services. It defines its work programme and the HSE participates with it in its analysis, the production of reports, etc. That is part of how IHREC does its work with us.

Dr. Eamonn Carroll:

I am not aware of any cost-benefit analysis in an Irish context. There has been some work done in other countries. It was mostly done at the start of PA provision in those countries, so much of it is about the cost benefit of having people living independently in the community instead of in residential institutions where there were major cost benefits. In an Irish context, that might be less the case and there would be cost and benefits in other ways.

Mr. Desmond Kenny:

There may be something in the Nordic countries where the PA-type service has been run, where there has been some sort of cost-benefit analysis and where there is control over what exists in terms of the individual.

I have some sympathy with what Ms O’Neill is describing. When I hear descriptions of practical assessments, however, I sometimes think in the context of the medical model and of determining physical absence, there is heavy emphasis on what is ultimately going to be provided. The concept of subjectivity when it comes to a person’s needs is very much in the background of the thinking in that regard. It has to measure up to some huge objectivity that people like Ms O’Neill and the people who work with her have to keep justifying.

IHREC is a toothless dog without any bark. In terms of rights for us or anybody else, I am not sure that the loss of the Equality Authority was not the biggest catastrophe that we suffered. People had more rights under the Equality Authority than will ever be the case get under IHREC. It sits there and puts a gloss on everything that this committee does, but it does not adding anything. Even in the context of its public duty, it sends things out but does not follow up. Everyone sees those who work for IHREC as nice, kind people and sees it as a great agency with a great philosophy, but it has no teeth.

Mr. Damien Walshe:

On the standardised assessment approach, I recognise the Senator’s long-standing commitment to the rights of disabled people to access PA. We launched a document last year called Pathways to a Personal Assistance Service. It includes a model we designed in order that disabled people can begin to explore their own needs and what supports might they require inside or outside the home. That would include social activities and employment. It is possible to design a system that gives disabled people an opportunity to assess what they need support with. It is putting the control back with the disabled person. I understand that there is not a limitless pool of resources, but it is possible to design a system that is standardised but that is not based on a lottery in the context of the CHO area. Such a system would ensure that disabled people are empowered and informed to begin to think about what they need, the additional supports they require in order to have the same options and choices inside and outside their own homes. On that basis, we would be able to map out a day-to-day picture and then extrapolate what kind of hours they would need weekly.

We can all accept that where we are is not what was envisaged 30 years ago because we do not have a standardised definition of what constitutes PA. There is a very clear one that has an international basis and that was adopted by the pioneers of independent living in Ireland. It has become diluted and depends on who provides the service. As Ms Gaynor stated, there are multiple ways by which disabled people can access services. As Dr. Carroll indicated, some people are very interested in having total control of their budget, but many disabled people just want a service and to get on with their lives. They are not interested in recruitment or retention. Ultimately, however, what they are able to access is limited by what service providers provide. They are often informed that their personal assistants cannot do this or that, which is contrary to the fundamentals of PA. We are told that people cannot bring their personal assistant to work or to the pub. We are told that personal assistants do not have medical qualifications and cannot administer medicine when people request it. It becomes a farce, because the system is about doing things that a disabled person wants to do in order to have control of their lives.

On the budget, I take on board that there is no assessment of what the unmet need is or what it would cost but the disability capacity review that was carried out by the Department of Health in 2021 stated that day services cost about €25,000 per annum per person. Very few disabled people are asked if that is what they want. This is a significant investment in a system that often runs contrary to the principles of the UNCRPD. This committee is tasked with oversight of how the UNCRPD is being implemented in this country, and it was fundamentally about disabled people being included in all aspects of society. There needs to be a genuine question around how we develop and create a system that is compliant with the UNCRPD, that is led by disabled people and that gives them a choice and control over their lives.

I welcome that the HSE is setting up a working group this year. I am really looking forward to the involvement of ILMI as a disabled persons organisation under Article 4.3 and in the context of general comment 7. It is crucial that disabled persons organisations with an authentic voice based on the experience of disabled people inform that system.

The campaign we have been running for the past few years is to define what constitutes a personal assistant, standardise the assessment of need, promote the need for PA, invest in the service and legislate for it. That was led by disabled people saying that if they were to build a system, this is what they would do. It is worth noting the year-on-year increase in the budget for PA, which is very welcome, but it should also be recognised that was based on disabled people at the grassroots level agitating and campaigning for what they want. In the absence of disabled people doing that, we will see a continual investment in services that disabled people do not want. If we are talking about the UNCRPD and are genuine about inclusion and disabled people having the right to participate in society as equals, we need to build a system for the 21st century that allows them to do that. They should not be told, for example, that if they move from CHO 3 to CHO 5, their service will cease because they do not have that right in the CHO 5 area. When they leave college, having had a taste of freedom and control, they should not be expected to go and live at home until they reach the age of 65 and are no longer considered a disabled person but can move into older people services. Without the opportunity for people to access that service, they are being denied the things non-disabled people take for granted, which is just basic life.

We welcome the commitment from the HSE, but we need to see how that will be done. It should not be something whereby the HSE can say that it will come back to it next year. We need this to be time-bound. We need leadership at the top, so this is actually and practically implemented. When the section 38 and 39 organisations receive that funding, there should be no lack of clarity. They should know the type of service they need to provide and how to promote it. Disabled people should be in control of it whether they decide, as Ms Gaynor says, to have a lie-in and have that flexibility, or decide to go to the cinema, a GAA match or whatever. That is what we do in Ireland and what we take for granted, but the majority of disabled people are denied it.

Within that standardised assessment of need, not every disabled person is going to need the same level of support. That is completely fine. Some people may need support in the workplace and others may need support to access social services. Some people may have higher needs and need a higher level of support. It is about embedding the idea that disabled people, through that assessment of need, are empowered to say what they need in terms of help, inside or outside the home, but it is their choice what they do.

Ms Shelly Gaynor:

As a peer mentor, I am sick to death hearing from very young, articulate and educated people who have gone through to get their masters in whatever they desire to do. They have full-on support while in college - if they need 24-hour care they get it. Then they go to the real world, the world we all live in, and I am told they are suicidal. They legitimately are because we dangle a carrot in front of them for three or four years while they are in college in order that they will study and get their qualifications. Then they leave college, as Mr. Walshe said, and they end up coming across me or ILMI. I literally do not know what to say to them. If someone gets PA during college life, that should stay with them. What benefit is it to go to college, to get a degree or a master's and then go home and disappear? A PA service is about freedom, choice and control but then some people are not able to go outside their own front door because their mother is in her 60s or 70s. It does not really match up. We are giving people the wrong impression. I have often said to Mr. Walshe that I am beginning to hate third level education because it gives disabled people the wrong impression in that the real world will not give them what they get in college. We need to get real. A PA service is not about getting someone up in the morning; it is about giving someone a quality of life in order that they can live and not just exist. That is what it is about.

Today, we have heard a lot about personal care and what people need. The HSE says it is not into standardisation because it is into individuals. That is great to hear. In reality, however, we need to standardise PA services because if I live in Donegal or Dublin, there might be a different level of service and level of hours. It is really about hours. That is what disabled people care about. We do not care about the service. We care about freedom, hours, choice and control. Everybody else involved with matters relating to disabled people seems to care about the service, but we care about what is on the ground. Five hours a day or five hours a week is not living; it is existing. We need to get real. If we are going to say that X body is going to deliver a PA service, we need to know what that will mean. As Mr. Kenny stated, the HSE needs to make that very clear. If it is going to give a load of money to service providers to offer a service, then let us get real about what a PA service involves. That is why ILMI is calling for standardisation of the PA service. It is too much like pot luck. I have three people I am working with in Donegal, and there is no service for them. They are told they will get a PA service but if they say, as Mr. Walshe mentioned, that they want to go to the pub or the cinema, they are told the service does not cover that. If we really care about the UNCRPD, human rights and disabled people's rights, let us get real about what a PA service is. There is too much medicalisation; we need to work on the social model. Every human being should be able to get out of bed. Every human being should have the right to get washed. Every human being should have the right to wear what they want to wear and eat when they want to eat, not when the service that is called a PA allows them to do so.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank you very much. Well done.

Seán Canney (Galway East, Independent)
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I do not know how I can follow that. It was enlightening to hear Ms Gaynor give us a visualisation of what it is all about. There are a few comments I would like to make. I am concerned about the fact that there is a differentiation between services in rural and urban areas. Coming from a rural constituency, I see it on the ground. People are living in more isolation. They are probably not aware of PA services that are there. That may be something the representatives from HSE would like to speak to. The words coming back at me are rights-based individualisation and the freedom to live your life as you want to live it. That is what we are about here. The worst thing I am hearing is that there is this control of what people can and cannot do. That is a world I thought we had left behind us. Significant work needs to be done in this area. The HSE might explain how it is going to balance the differentiation between urban and rural areas. What is stopping this being a uniform service across the State? Is it money? Is it lack of enthusiasm? Is it just that it is something people have no interest in? From my point of view, we are starting from the wrong place.

Ms Yvonne O'Neill:

The rural-urban issue affects every CHO area. Even within the area the Deputy represents there would be quite a high number of PA hours relative other CHOs, but that probably does not reflect the fact that in certain pockets, because of distances and rurality, there would be lower levels of service. Some of that has to do with the way in which we can employ people with the agencies providing the services or how the individuals who are employing directly can get people. It is about the market for PA providers. Some of it relates to the rural-urban aspect. That sort of postcode lottery is of equal concern to us. There is certainly no lack of motivation in the work that has been stood up now to try to address that as part of the standardised definition and the standardised assessment and access. Where we can identify those rural-urban aspects and how they are being negatively affected, we may have to put in some additional compensatory aspects in the context of distance to travel.

That issue is coming up more generally in relation to home support and other types of services which involve distance and travel. The work that is intended to progress the standardised definition and standardised access will begin to flush out some of those issues.

Seán Canney (Galway East, Independent)
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When might we see them being flushed out? What are the timelines?

Ms Yvonne O'Neill:

We are committed to that piece of work starting in April and finishing in December so that we at least have some analysis of the way in which the service can be provided and the model of care. At CHO level, the implications for that model of care for some areas may be different, particularly relating to rurality, the general market of providers and the market for the individuals to be employed. That is part of the analysis.

Seán Canney (Galway East, Independent)
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Does Dr. Carroll wish to comment?

Dr. Eamonn Carroll:

I am just looking at our results. The urban-rural difference did not come out strongly in our research in terms of predicting respondent satisfaction. It was not a significant effect. It came up in terms of predicting whether the respondent was in favour of or looking for reform of PA provision. Compared with those in rural areas, people in urban towns were more likely to be in favour of reform. That could be because they were less satisfied with the package or because they were perhaps more plugged into networks of people and knew this was a possibility. However, it was not something that came out strongly. Perhaps the variation is more area to area than straightforwardly urban-rural.

Something that came out in the qualitative interviews was the importance of other services alongside PAs. We spoke to one individual who was based outside a reasonably sized town – it was not a small village – who was on a bus route but could not use it because it was not accessible. There was no taxi in the local area that was able to carry the person who therefore needed a personal assistant to travel into town where, had there been an accessible bus route, the individual could have travelled in alone. These other services may be what are missing in rural areas, more so than personal assistants.

Mr. Desmond Kenny:

We probably should have reminded or assisted Dr. Carroll and the ESRI team to look at how the cluster of centres for independent living existed around the country. There is one in Galway and 27 in total. ILM is trying to create more. Where they existed, those hours exist in some quantity because of agitation, political support and, variously, the means of agitating for 30 years in localities. That is how one gets, if you like, an unevenness of spread. It is due to the veracity and tenacity of the cases made at those levels in a local CHO or community care area generally in the past. That is probably what allows for the creation of dissimilarity between areas A and B. Again, in the past, that was won through the agitation of, say, people such as Deputy Canney and others who came in behind it and worked at it.

We are back to those days again where we need a collective of allies and individuals to create a new future. I have sat around tables, though not like this one because this is a more eminent body, for many decades now. We have been listened to and gradually included in contributions. However, it goes back to another report, another stage of verification, another collective and another purpose.

The aggregate of actual improvements is minuscule. The only right I have is to the blind person's tax-free allowance, which I got back in 1963. I have no other rights. It is the same with other people out there; they do not have any rights. We have concessions. A big problem is that we are either in a concept of family care or organisational care. The organisational care has emerged and blossomed out of charity care when the nuns, brothers and priests moved on and the charities had to take over in a non-religious context. However, we are still in care. It is a huge industry of minders who keep us not deliberately subject to their care, but speak on our behalf. Others turn to them and say they can do this for Shelly, Des or whatnot who do not need to do it for themselves. They are provided a bus rather than giving them five hours of driver time and if they can afford a car, their PA can drive them. It is back to that. It is trying to dismantle care and reassemble it as rights. I think that is what this committee is about.

Ms Shelly Gaynor:

Just to back Mr. Kenny up on that, I feel like a parrot here today. Personal assistance services should not be referred to as “care”. That is the medical model. We are in 2023. I, and many thousands of people around the country, identify as disabled persons and do not require care. As I said, and I will keep saying it, just because I need assistance to get out of bed, I do not think of that as care. When I am in hospital, I need care. The PA service was not set up 30 years ago to deliver care. It was about giving people with a disability choice, control and freedom over their own lives. If we learn anything today, it should be that the PA service should be legalised and standardised. People should stop referring to it as “care” because it is not care. That is the part of the problem. We are meant to be operating under the social model of disability. We are now in 2023. I do not need care. I run my own company. I have a direct payment, as many of my peers within the disability community do. There are many times that we care for our staff. Please do not say that if someone uses a PA service as a model of support that it is “care” because it is not care.

Mr. Damien Walshe:

I will respond directly to Deputy Canney on the rural-urban divide. To amplify what Mr. Kenny said, because we have never created a standardised system, it means there are significant numbers of disabled people who are unaware of a service that could enrich their lives and give them that freedom. There is also the pure lottery where disabled people are told the service is not provided in a certain area.

To take CHO 1 as an example, centres for independent living were established in Donegal, Leitrim and Sligo. There is a culture and awareness among disabled people that personal assistance is something they could access, notwithstanding the drastic years from 2008 to 2019 when there was no budgetary increase at all. It is through the agitation that Mr. Kenny spoke about that disabled people got the year-on-year increase. That is based on disabled people demanding it. If we take Cavan and Monaghan in the same CHO area, there is no PA service because there is no culture there. We have members there. One member has a direct payment but when other members apply, they are told there is no such thing as a personal assistance service in Cavan and Monaghan. We need to recognise that there is no system there. It is completely dysfunctional. We have a situation where disabled persons in Leitrim can access a PA service but across the county border in Cavan they cannot access one because there is no service provider in place. We need leadership from the HSE to define and standardise. It must decide to create and build a system and to ring-fence a budget that will be invested year after year. Disabled people should be made aware of that and how they can be assessed for it. Regardless of where they live, they should be able to access that support. In the absence of such support, a huge effort is required to drive demand from below and create structures and organisations to have that. That should not be the case.

As Ms Gaynor said, there should be a rights-based model in place to allow people to access the supports they need. Unfortunately, because a PA service was not provided in them historically, in large parts of the country people do not have the opportunity to access one. It is, as Mr. Kenny said, based on where there have been organisations in place that are led by disabled people. In other parts of the country, unfortunately, that is not the case.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I apologise that I had to pop out for a few minutes to speak in the Dáil but I heard the witnesses' opening statements. I welcome them to the meeting. I apologise if I ask a question that was asked in my absence.

If we are serious about the proper implementation of the UNCRPD, about giving disabled people a proper choice, and about ensuring they can access independent living, personalised budgets are the way to go. There was a demonstrator project. I do not think the review of it has been completed. It certainly has not been published. We are a great country for pilots but pilots that go on and on and sometimes are not reviewed so no lessons are learned from them about how to proceed. Only a small number of people ever experience the pilot. Will the witnesses give an update on what is happening with that project? That would give disabled people real choice about how they spend their money, for example, to source a PA or home support or to access services and whatever else they might need. It should not be complex and should not be tied up in bureaucracy. One of the complaints I receive from those who apply for a PA service is that the whole process can be onerous in that people have to prove their need and if they are lucky enough to have a certain number of hours approved, they have go about trying to employ someone and ensure that person is registered for PAYE and so on. I am aware some organisations will assist with that, but they are not everywhere. I know someone in Cavan who was looking for a PA service and had to source a company in Donegal to employ the PA for them. It is important to ensure the process does not get tied up in bureaucracy. It should be easy and straightforward for the people to access and use.

Ms Yvonne O'Neill:

Under the demonstrator model, 180 people are participating in the personalised budget across the nine CHOs. As far as I am aware, the report on the demonstration project is due before the end of this year. Mr. O'Regan would have probably been able to give a better response on this so I apologise that he was unable to attend. We can come back to the committee with an update note on the project. Ms Hanley may be able to speak about this as a few people in her area are participating in it.

Some of the preliminary findings include some of the complexities Deputy Tully has identified that are emerging from the initial analysis. It does not suit everyone. Some people who participated are saying that they need some kind of hybrid response as they feel they have taken on too much responsibility. That idea that has been referenced by the other contributors is important, namely how to ensure we have the right offering where some organisations can offer the right support to enable people to have a PA and-or personalised budget and do not have to take on all the roles and responsibilities of employment directly. I will revert with an update on that. There are 180 participants and as far as I am aware the report on that demonstration project is due before the end of this year.

Ms Olive Hanley:

That is exactly it. As Ms. O'Neill mentioned, I have personally met some people who found the task of being an employer - Ms Gaynor referenced earlier that delegating the task was the preference - to be quite onerous. Some people have said they would prefer to go back to a home support model and use the home support for a PA role. We have facilitated that in some cases. The Leader programme is probably a good example of where it works well and there are supports, including peer support, as Ms Gaynor has described. Some people find it quite onerous to find people and to access staff. That is a significant issue. It works for some people. We need a few different models. We need the companies or agencies the Deputy referenced when she said someone had to go to Donegal. It is quite bureaucratic to be an employer as the health and safety legislation, HR issues and so forth must be complied with. It is a lot to ask of someone who is employing two or three people. Challenges like that have come up. Some people have no issue with it. They are fine and it works well.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The biggest issue is the lack of hours. Many people who apply are allocated very few hours that are not enough to help them sufficiently. Someone will get additional hours when someone else loses them or passes away. The number of hours needs to be increased immensely so that all those who wish to can avail of a sufficient number of PA hours to pursue whatever they wish in life whether that is education, employment or health and social activities. That is the biggest obstacle.

Ms Yvonne O'Neill:

We would not disagree at all. Every year, we seek to increase those hours and the associated funding. In recent years notwithstanding other challenges in the employment market, we have been able to deliver the full hours with the funding we have had available. We continue annually to seek additional funding under the Estimates process. We are in complete agreement.

Eileen Flynn (Independent)
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I was once where Ms Gaynor and Mr. Kenny are now, that is, campaigning, lobbying, begging and pleading for basic human rights. As a member of the Traveller community, I know how exhausting it can be sitting around these tables and not feeling heard. Ms Gaynor said that she is sick and tired of what has been happening.

Last May I attended the Independent Living Movement's #PASNOW campaign. It is almost a year later and what has changed? When Ms Gaynor was speaking I felt the emotion. I had to go out for a minute to calm down before I came in to speak to the HSE and the organisations and people that are here. Very little has changed. I had not prepared this question, but I need to ask it. Who is held accountable for the way people with disabilities are being failed? When we talk to the HSE, it is not its fault. It is not the State's fault. Whose fault do the witnesses believe it is? Someone is at fault for not meeting the needs of people with disabilities. Every one of the Members of these Houses has a PA. I have dyslexia and there is no way I would be able to do my job as well without the good person I have with me. She does not tell me what to do or how to do it but she supports me when I ask her for support. People with disabilities are looking for that support to be able to live a free life. We are seeing here today the failures in human rights and equality for people with disabilities. We do not talk about people with disabilities when we are considering the housing crisis, in the same way as we do not talk about members of the Traveller community. Today must be a very sad day for some people who are renting, who are disabled and who are looking for services. We continue to fail people but no one is held accountable. That is my question to the HSE. Who is accountable? If it is not the HSE, who should we be holding to account for not upholding human rights and equality on the grounds of disability?

Mr. Walshe spoke about the new working group that has been set up by with the HSE. My other question relates to ensuring disabled people's organisations, DPOs, are consulted. Which organisations are involved in this working group and how did the HSE approach them?

I do not have any other questions that have not been asked. What struck me last year was that a person gets a personal assistant for 45 minutes a day. The Government and the HSE can pat themselves on the back and say they are doing a great job because of those 45 minutes per day.

I have a friend, Dr. Rosaleen McDonagh. I hope she does not mind me saying this. She comes before this committee, the Joint Committee on Children, Equality, Disability, Integration and Youth and the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science. She brings a personal assistant with her. She absolutely loves her fashion. She is a human being. She is entitled to dress how she wants and to go out if she wants to go out. She would be the first to say that she would not be able to live her life without her personal assistant, PA. How do we fix it? Who is to be held responsible and how do we fix this? This committee needs recommendations from the HSE, from allies and organisations and from professionals, who are the people who have gone through it. We need to hear from them. I could say a hell of a lot more but I would be in very big trouble if I did. I will just calm down a little and take a step back.

Ms Shelly Gaynor:

For me and the people I represent today, those in the disabled community who use a PA or want to use a PA, the biggest way of making our lives easier is to stop medicalising disability. It is not going away. It is something that will always be there. We keep talking about care and what disabled people need. What a disabled person needs is exactly what everybody else around this table needs, although perhaps in a different way. We should stop looking at disability as something that is specialised. Many of my colleagues who use PAs, many of the people I speak to every day within my job and I myself will always say that we do not need care. We need somebody to be our arms and legs or our eyes and ears. Having a disability does not mean you are an eejit. Sometimes, when people acquire a disability, there is an assumption that care will be needed and that everything is going to change. Yes, if you acquire a disability, your life is going to be different from the one you had. If you have a baby today, tomorrow or at some point in the future and the baby get diagnosed with a disability, things will be different than if you had a child who does not have a disability. However, can we stop medicalising disability? That would be a massive step.

Direct payments are not for everyone. I am on a direct payment, although not through the same model. I am on the Áiseanna Tacaíochta, AT, network direct payment. The Senator is right; direct payments are not for everyone. The reason I and many of my colleagues believe they are not for everyone is that it is too complicated to manage a business. That is what having a direct payment actually means. You are managing employees and doing taxes. I never wanted to run a company. I never wanted to be a CEO. That was never my ambition. My ambition and goal when I decided to go for a direct payment and move away from a service provider that allegedly offers a PA service was to break down some of the barriers I was facing. I was being told regularly that a PA, who is very much my arms and legs, could not hand me a tablet for a headache and yet he or she could go out and drive my car, which is a lethal weapon. I have full capacity to live my life so when I heard things like that, I knew it was time to make the jump. I rang Martin Naughton, God rest him, and said that I had had enough and needed to have more choice, freedom and control over my life.

Direct payments are not for everyone but the only reason they are not for everyone is that they are very complicated. We need to look at other models to make it easier and to give disabled people real control over their lives. I believe that should take the form of a direct payment. As Mr. Walshe, Mr. Des Kenny and I have spoken about, if you have a child in this country, you get child benefit. You are not asked anything about what you are going to do with that money. However, when it comes to disability, you are accountable for everything that you do. I understand it is State money but that is what turns people off direct payments. That is what turns my mentees off the idea of a PA service or a direct payment. It is too complicated.

As Mr. Walshe has said, people do not realise that a PA service is available and, if they do realise and are linking in with their peer mentor and their friends who have a disability, they are scared of it. An awful lot of disabled people have not been given options, control and freedom, whether as a result of their parents being overprotective or of not being able to go out and lead their life as a normal child, whatever normal is. An awful lot of the time, disabled people are being sheltered and so, when they get to 18 and are able to go to college or a post-leaving certificate, PLC, course, they do not know what to do. When I went to a PLC course provider for the first time, having gone through the special education system, I did not know what to do when the bell went because there are no bells in special education. We must allow people to make mistakes and to live a life. It is not about existing or about getting people up in the morning, putting them into their chair and saying is it not great that we have provided these thousands of hours.

I have heard a lot of figures today and they sound very good but is this funding and these hours making a difference to disabled people on the ground or are they going into administration? I have had a direct payment for the last four years and I have never been approached about administration costs. That all comes out of my hourly funding. I am very sceptical. My mother would say I have been in the disability movement all my life but I have technically been in it for 25 years. We hear the figures every budget day when we are across the road in Buswells. However, I wonder where that money is going. Is it going into administration? The people we see in ILMI are not telling me that they are being given 20 or 30 hours. They tell me a lot. I hear a lot about how bad people are feeling, how low they are and how much of a burden to their families and friends they feel. However, when you give people real choice and control and a legitimate and pure PA service, it makes a massive difference. I say that we should give the money to the disabled person, which causes people to say "Oh God, we cannot give people €100,000 a year", but we do so in other ways. We do it through child benefit every single month and nobody asks a non-disabled person who happens to be a mother or a father what they are doing with that money but, when it comes to disability, the State and the HSE are very frightened and risk-averse.

I am a citizen, as are others with disabilities. We should remember that, although Mr. Kenny and I are disabled today, anybody in this room could become disabled. For me and for my colleagues and friends, the key thing is to give people control and to stop saying there is a PA service in Cavan or Donegal when, in reality, there is not. People should really go back to the HSE, which has responsibility for this service, and look at the type of service they are paying for. People I talk to every day are telling me that they have a service on paper and that the HSE is ticking a box but that, in reality, they cannot move. They cannot go outside their house. If they do not feel like going to college today, that will be catastrophic because there may not be a PA in the house to be there for them. We are now in 2023. If you really care about disabled people's equality, you should give them power and control over themselves. I believe that should be done through a direct payment but we must make it easier for people to have freedom and control over their own lives.

Many people are turned off by the idea of a PA service because they think they will never have the capacity. I would not know what to say to them. That is because disabled people, historically, have not been given the same options or choices as their non-disabled peers. Does that answer the Senator's question? Give control to disabled people, fundamentally. Allow people to make a little mistake, like everybody else.

Mr. Damien Walshe:

In terms of how to build accountability, we do not have a system to hold to account, which is the fundamental problem. Thirty years ago, seven people pioneered a system and there was a pilot. Deputy Tully said we love to start pilots but we do not assess or standardise them. That is where we are now. We need a commitment from our allies on the Committee on Disability Matters that personal assistance is an issue of huge importance. It is fundamental. It may not be for every single disabled person but when disabled people become aware of it, that is usually the system they seek. More than €2 billion on an annual basis is being pumped into what we call a "disability industry", a tiny fraction of which goes towards what disabled people actually want. That needs to be addressed and a system must be built that can be held accountable and provides clarity for disabled people to be aware of a system that can give them choice and control and not, as Dr. Carroll said, relying on the goodwill of good staff in the HSE pulling strings here and there on anad hocbasis. That is not sustainable and it is completely unfair. A system must be built that is based on compliance with the UNCRPD, and must be invested in on a year-by-year basis. As it stands, we cannot hold a system accountable. Today is important and we need the committee as allies to keep this on the agenda. The disability capacity review by the Department of Health just extrapolated. It gives X amount to PA so, based on projection of figures, it will slightly increase that. It is not just about throwing money into every single service. There needs to be an honest conversation around inclusion in Ireland. Historically, we have funded systems that segregated disabled people. That is not what disabled people want. We need to invest in systems-----

Eileen Flynn (Independent)
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I am not stopping Mr. Walshe from talking but I wish to give an example. In Ardara, County Donegal - we are talking about services in general in rural Ireland as well - trying to get a swing in the local park for children with autism or children with disabilities is a challenge. It is a challenge to even get the local authorities to make it possible, for play time for children. It is as simple as that. Services are not being provided for people or children. It is remarkable, in 2023.

Mr. Damien Walshe:

As Ms Gaynor said, we must normalise disabled people. Having an impairment is part of the human condition. Great strides have been made in inclusion in mainstream education but without that fundamental support, we are saying this is as far as someone can go and we will not actually take our commitments seriously under the UNCRPD. We must actively resource the participation of disabled people in Irish society. I will give a clear example. With the emergence of ILMI and other DPOs, there is now a strong voice from disabled people, saying what they want. There was an absence of that for a long time. Service providers have colonised the space, claiming to speak on behalf of disabled people, which they have no authentic right to do. Only disabled persons' organisations have that right. There are 140 actions in the national disability inclusion strategy in the existing plan. How many references are there to a personal assistance service within that? There is not one single reference to one of the most fundamental systems that will give people control and choice. The committee, as allies, must keep this on the agenda. We recognise that the HSE is discussing setting up a working group to standardise assessment, define clearly what a personal assistance service is and work towards building a system that can be held to account and be invested in year-on-year. Every single local authority in this country - grassroots-level political support, led by our members - recognises that a personal assistance service is the fundamental right disabled people need to participate in all aspects of society. We know colleagues at a party level supported that, so we need to see it brought back in. We need to see how that system can be built first before it can be held to account. It is ad hoc, no one is responsible, yet in fairness, everyone is responsible if it has not been built properly.

Ms Yvonne O'Neill:

To respond to Senator Flynn, regarding accountability, I am the national director for community operations and I am before the committee with accountability on behalf of the HSE. We are accountable for the delivery of health and social care services to people, including people with a disability. That accountability is part of my presence and that of my colleague today and how we report on the service we provide within the funding available to us and within the legislative and policy contexts, of which there are many. Mr. Walshe articulated the point as to how we reconfigure services when there are multiple policies and legislation which require us, on a statutory basis, to fulfil some duties and in policy, to aim for objectives which are policy objectives. We are always balancing all of those requirements within an overall framework of accountability for services. Personally and professionally, in my role, I hold accountability. That accountability is devolved into a delivery system.  My colleague represents one CHO structure. Multiplied by nine, Ms Hanley also holds that delegated accountability.

I hear the point strongly this morning and as a health and social care system, we are trying to move to patient and service user-designed services. That is part of our policy, that is, nothing for you without you. For any of the constructs I have been involved in establishing or that I have seen currently in the HSE, when designing services, we have service user and patient involvement, as there will be in the working group on PA services.

Second, we are trying to move to an outcomes focus, rather than counting the number of hours. I was going to respond to the question by saying what is different from last year. I could say there are 450,000 more hours than there were last year and 250 more people receiving the service-----

Eileen Flynn (Independent)
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What does that mean?

Ms Yvonne O'Neill:

-----but Ms Gaynor is saying not to talk about the numbers because that could mean something different to some people. We are a part of the HSE and, with our providers, service users and patients, are trying to move towards outcome discussion, rather than activity discussions. Some underlying systems are needed to bring us to that point, which is what we are trying to do. In the work of the multiple working groups around disability and other social care services under my remit, we are trying to move towards the language of outcomes.

Eileen Flynn (Independent)
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I know it is different but as it is still on the nine grounds of discrimination, I would like to add some of my own experience. For the past 40 years, we did report after report and there were all of those working groups, but with no action. It is not personal to Ms. O'Neill, but as Ms Gaynor rightly said, in the HSE, as is the case with benefits for people with disabilities - they have a big problem with that Department - on the ground, people do not see that those hours have increased. I could ask any of the other four witnesses whether that is evident on the ground for people. In counties Donegal and Dublin and in the Traveller community, people do not see this on the ground. People with disabilities are feeling failed. Not only are they feeling it, they are being failed. I apologise to the Chair but it is not every day that the HSE appears before the committee. How do we get that system? Even if we did not have a system, how do we get that accountability. Do we go back to the Minister responsible for disabilities and tell him we are being failed?

Ms Yvonne O'Neill:

When I speak about service user involvement in design and delivery, it is also about the service user telling the story of the service and delivery. It is not about me sitting here counting and telling the committee the number of hours but about those same people who sit alongside me in the working groups being able to say they can see it, they can report on it and it is meaningful. While we are talking today, under mental health there is a separate event, one year on from the Sharing the Vision policy, on the actions happening, the work being done around direct service user involvement and executive participation in management teams in mental health and in the functions and working groups we are involved in.

That demonstrates the points the Senator is making, which is we need our own service users to be able to tell the story of what we publish in our reported activity documentation. I think that working directly with our own service users will change that.

Eileen Flynn (Independent)
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Yet we have some mental health services that will not interact with people who have disabilities. They just will not. I have numerous emails from the parents of children with autism, and the mental health services will not engage. That in itself is discrimination. Obviously, we will not have all of the answers today but I do not think any of us can sit here today as committee members and say we are doing a good job because we are doing our best as committee members. However, there is a long way to go and we need implementation and we need a system where we can hold the Government to account.

Ms Yvonne O'Neill:

There we agree.

Michael Moynihan (Cork North West, Fianna Fail)
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I call Deputy Feighan. It is his first contribution to the committee. He is a new member. We welcome him on board and look forward to working with him.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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It is a great honour to be here and I thank the witnesses for their submissions. They have been very powerful and personal and have given us a lot of information. I thank the ESRI for this vital report, and the witnesses for the work they are doing. I represent the Government. I was in the Department of Health for two and a half years, and it is only then you realise what the Department of Health does and what the HSE does. There are some great people in the HSE. Like those here, they see it as a vocation. One thing I have noticed is they like good governance and good data. We are moving towards that situation and a lot of funding has certainly been put in there. However, it is about how that money is spent. There are different ways. Sometimes we have everyone complaining that one size does not fit all and people want a bespoke system. I have heard different views about the way this is delivered. One positive finding in the report was there was a high level of satisfaction with the quality of the existing PAs. That is encouraging to hear, and I wonder if there is a difficulty recruiting and retaining PAs, because that difficulty exists across SNAs, home help and all of that, which is just one area of difficulty. I come from CHO 1, which covers Donegal, Sligo and Leitrim. I am aware of Sligo Centre for Independent Living. Those involved have been huge advocates, like the witnesses, in ensuring that the voices of those with disabilities are heard. They also advocate for service users to be part of the policies.

Another area I am anxious to explore is the systems. During Covid, I saw that a lot of Departments worked together, because they had to do so. Instead of working in their own silos and Departments, people are now getting time to stop, think, collaborate and work together. That is what this committee is about; it is about collaborating and working to better hear people's views and, when something is not working, to try to come up with the best approach that service users and everybody else can be happy with. I wonder why those systems are not in place much quicker. Are we moving at a pace where we can do something to assist? Finally, Ms Gaynor's contributions have been very helpful. She spoke about how it is not just about care - it is about going to the cinema, to the shops and to cafes. These are things that are very important. Mr. Walshe said we need an agreed definition and we need consistency. We need to separate this from home help because sometimes we think something is home help and it is not. It is personal assistance. Is there not a ring-fenced budget there? That is the question. Today we have spoken about the Nordic countries. Is there any other country we can follow, which is doing this better? I do not want to go back over what has already been said, but it has been a very important discussion. A lot of great things are happening, but there are a lot of things we need to do better. People talk about Government, the HSE, the Department of Health and centres of independent living. They are not just entities. There are people working for them and doing great work. We need to collaborate to work much better and deliver a better service for Ms Gaynor, Mr. Kenny and Mr. Walshe. That is the most important thing. Compliance, regulation and employers are difficult issues. However, today has been a very important discussion and it has been a start. We need to work together.

Mr. Desmond Kenny:

Recruitment and identification is important and they have become a huge difficulty. We currently have a working group within ILMI to tease out people's own experience and learn ideas about the best way to proceed. In some ways we can over-sophisticate the expectation. Do I need somebody with a Quality and Qualifications Ireland, QQI, level of training or whatever, to come to the cinema with me, or take me for a walk in the park? The answer is "No". There could be elderly people or family people who want a couple of hours and who can meet certain requirements so far as a minimum standard of training. They could do a lot of work and be more available in communities to do work. We must look at the combination of support. I call them packages but they are more like units of design to assemble what people want in their programme of support. They must decide in some way how to do that. It is frightfully important they do that. It is also important that we recognise, right upfront, how committed to and individually supportive of our systems are Ms O'Neill, Mr. O'Regan and the staff in the HSE. Sometimes they are overwhelmed, and committees like this in some ways overwhelm them even more. Life is now full of squeaking wheels and the pressures of the next discovered inadequacy, the next right not complied with or the next belief that something should happen. The expansion for the cry for redress of neglect over recent decades from committees and active groups like this and the enthusiasm for the UNCRPD is creating a cacophony of extra noise and expectations within the system. Behind all of that, what Mr. Walshe has referred to as the industry of disability, a characterisation I agree with, is adjusting its own language of protection. I have seen it over decades. It started as an immediate fallback from the absence of the removal of religious commitment and personnel from saints being laicised and taken over. They have adjusted to the continuity of their own survival. There are more than 40,000 people working on the periphery of our needs. They do not let us in totally. To some extent, they are part of the largest squeaking wheel system in the whole delay in individualising rights for disabled people. I do not know what can be done about it, as it cannot in any way be dismantled. They are good people and good agencies. However, they are removed from our ethos and the ethos of independence and seeing people as individuals. We are a collective of the disabled - a massive group. That again is part of the problem.

The committee members and others here and in the HSE are quite rightly presented with the number of people and with the aggregate of need within a collective of a disability type. Why do we not dismantle the need into a collective of needs to be met, rather than all of the time looking at disability specifically by blindness, deafness, what was once the inability to walk and whatnot. If people require social work, then they do, whether they are blind, deaf, or had polio in the past. What we are doing is contributing to the continuity of the machine of disability that exists and supports, but it does minimise the right to access.

In my last years, I have come back to the belief it is again time for direct action. The continuity of survival within the system of people continuously presenting and representing in regard to the next report and the next feasibility study goes on. In a way, we have all contributed to that. What we need to do is to decouple ourselves from the collective of noise in order to create our own individuality of lives. That is not in any way to denigrate our bigger gains. I think this committee will do great things within the UNCRPD and in its the unravelling of the multiple streams of complexity, and God help us listening to the multiple squeaking wheels that will come before the committee.

Dr. Eamonn Carroll:

To return to the point about good governance and good data, that is certainly something the ESRI came across. In all of our dealings with disabled people, disabled people's advocates, the service providers and the HSE, everyone came across as very committed and doing their best within a system that was not setting them up to succeed. Obviously, as a research institute, we keep coming back to the importance of good data in that we cannot meet needs if we do not know they exist. It is very important that this data is collected and recorded, and that it is transparent and accessible. If someone is assessed, their needs are evaluated and they are given a certain number of hours, if the number of hours they are given is under the number of hours they need and if the hours they need are recorded, that gap is recorded and it can be tracked.

Another point worth mentioning is that this research was done under our joint research programme with the National Disability Authority, NDA, and we are currently finishing up some work with it that looks at attitudes towards disabled people. I cannot give away too much as the report has not yet been launched but one thing we have found is a very high level of public support for policies to support disabled people and specifically for increasing the funding towards this. Even when we go into things like acknowledging that this might mean a budget reallocation or a tax increase, I think there is a public will and public support for it.

There was a question about whether other countries were doing well. The Nordic countries always come up and the UK comes up but again since 2008 they saw a retrenchment similar to here. I do not think any of them have fully moved past that yet. We could be plumbing into uncharted territory here but it would be great for Ireland to able to be front of the pack on this.

Mr. Damien Walshe:

In terms of recruitment, I think we can see a generalised trend in Ireland of moving away from institutions and building supports that support people inside and outside their homes. Certainly we have witnessed challenges in recruiting and retaining staff. One of the things Mr. Kenny touched on is that without a clear definition of what a personal assistant is, it if often highly medicalised. Ms Gaynor said at the start that is a very simple system. Disabled people will tell people what they need. It is not a carer or medical support. However, when it is advertised as such, it puts off a lot of people as they assume they need some kind of highly-regulated, medicalised training. Some service providers have put that onus on that kind of recruitment process and it has become overly bureaucratic and formalised. Fundamentally, disabled people are looking for supports for the things they cannot do themselves. That can vary across what disabled people need. One of the huge challenges is that we get people employed to act as a personal assistant for one person, but who then moves into another setting where they act as a home help or home carer, so it blurs their roles.

In order to have a recruitment drive, and I think it is really important that this not only falls on the HSE but that we look at the Department for Social Protection, we need to make this a career that is attractive. As Mr. Kenny said, it could appeal to people who are not looking for a 9 a.m. to 5 p.m., 40 hours per week job. It could be made attractive in that this could be something that is recognised as providing potential liberation for somebody and a connection within the community that might not be onerous and allows a flexibility based on where people's life circumstance are. As Mr. Kenny said, in our working group, we have seen no such drive to say, "This could be a job for you". We need to think at a statutory level in the long term. If we are continually trying to meet commitments under the UNCRPD and in relation to older people and move away from institutionalisation and warehousing people, we must build a system and structure of support that gives people choice inside and outside of the home. Part of that is that when we have a system in place and we have invested in it, we need to message that so people may think that it could be the job for them because it is not overly bureaucratic and not overly structured and that they could get great enjoyment from being in a role where they provide that help and support that gives people that bit of freedom of choice in their lives that they are looking for.

Ms Shelly Gaynor:

I definitely echo that as someone who has been using the service. Whether we like it or not, it is because of that medicalisation that people are very reluctant to apply. People have emailed me and have told me they have QQI qualifications or a healthcare assistant qualification but that does not interest me. What interests me as a person, because that is what I am, is that I get someone into my home who I connect with. I do not really care whether someone has a QQI qualification. Showing someone how to use a hoist can be done. Everyone who decides they want to use the PA service is able to articulate what they need. We are well able to speak our minds. I am well able to tell somebody what they need to do. There is the fear of the HSE and of service providers as they do not allow me to be me. They tell me, as a service user of a PA, that anybody coming into my home should have a QQI. I have had some amazing PAs. I had an ex-garda, a florist and many great people who would have absolutely no interest in getting a healthcare qualification. It came up with my service provider, because two of my staff did not have the famous QQI qualification. When I said it to them that they would have to get that qualification to maintain their jobs with me, they both categorically told me they would leave if they had to get a QQI. Not everyone is academic and not everyone is into going to college. For me, as a disabled person, and for many of the members of ILMI, we want someone who we connect with, who has a bit of cop on and who can take direction. If someone is a PA and wants to get a healthcare qualification, that is their prerogative. However, as Mr. Walshe said, it stops an awful lot of people applying for the job because one hears people say it is a calling. Why is it a calling to be somebody's arms and legs? There are some people who are very dedicated to what they do and to helping.

My PA, who is with me today, has been with me for five years. She happens to have a HCA qualification but, as I said to her when I met her, that does not interest me. It does not make a person more favourable for the PA role than if they swept the streets. That is the fear. We are not medicalised and we should not be medicalising disability. When we put barriers like that in place even before somebody can join a provider, then it turns people off. All of us in the disability movement face difficulties getting PAs.

There is not one person who is not struggling to get a PA in the door and it is because of the qualifications. Another reason is where people live. The service provider may decide they only get two hours. Another person who lives down the road - let us call him "Joe" - and is a bit easier to get to may get more hours. Qualifications are great for the individual if that is what they want as the employee. However, they can stop people applying for what can be a great job. People can travel the world, depending on what they do. We are stopping people from getting a very good job. If I had my way, I would not stipulate that PAs need a qualification because right now everybody is struggling whether they are from Dublin or Donegal. It does not matter whether the allocation of hours is five hours or a 105 hours, we are all struggling to get staff and that is across the board. If it is stipulated that a person must have this or that, then it will make things more difficult and disabled people cannot live an independent life.

That is why disabled people think they cannot get a PA. They have a fear of being left in the bed because the provider will say they cannot somebody to them today. That is the reality. Many service users cannot live their lives. Many of our members have children. They are mothers or fathers and they cannot bring their children to the park for a walk or attend an after-school activity because they do not have personal assistant hours or they have not been prioritised. That is what they want to do with their hours but they are being told "Joe" down the road needs to be fed at a certain time, so they must wait. Therefore, everyone suffers, including the whole family. That is not good enough in 2023. If a PA service is offered, then it must be a real PA service and it must allow a disabled person to do what they choose to do or choose not to do.

Ms Yvonne O'Neill:

The points made here are relevant in terms of how we are trying to do the workforce planning piece for models of care in the areas of disability, mental health and older persons. When the service being sought is defined, then we can have a reasonable job description and a reasonable set of qualifications or otherwise for that purpose. I am conscious that we should acknowledge that there is a policy context around introducing regulation into this environment. Today's contributions are important to inform the committee's thinking about policy.

On the point about collaboration and the systems working together, in terms of the employment market, we have a problem as members will know from other engagements around home support-type workers, including PAs. Within our resource for PA and home support for disability, we have not yet reached at point where we have not been able to recruit what we need but we know we are in a problematic market. Some of the work we have tried to do across government is to say that there is a potential workforce who are precluded from applying for jobs because of the nature of their social benefits and how their benefits will be affected once a threshold is reached. Yet these people could be a very flexible workforce as they may be free in the morning or evening, depending on their other commitments. That is the type of collaboration to which the Deputy referred. We tried to do that through a cross government piece as well.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank all of our witnesses for their engagement and commitment. A number of issues were raised. There is the legal definition which is the building block. I take the point about reports. This committee meets once a week to deal with disability issues. In previous times, such discussions only took place once or twice a year. It is hugely important that we have continuous engagement because, irrespective of how many wheels squeak, we need to make sure this wheel squeaks the loudest about the challenges. In our pre-budget submission, we looked at personal assistants and the fact more money was needed. The HSE's personal assistant budget has increased from €80 million to €110 million but it needs to be further increased, which is something that we, as a committee, will carefully consider over the next couple of months ahead of the budget.

There is also the definition of "PA" and the great enabler a PA is. This can have a hugely positive impact on society, on the person with a disability and on the personal assistant. We must use that language of the great enabler to try to get this up and running. It must be properly structured. Someone mentioned people had to navigate the system to get a service which is no longer acceptable. We will continue to work on that.

I thank the members for their engagement and dedication to the job that we have. We will continue to bang the drum or oil the squeaky wheel as best we can. Finally, I thank our team who work on this committee.