Apologies have been received from Deputy Seamus Healy and Senator Nikki Bradley. The purpose of today's meeting is to discuss living arrangements for people with disabilities. On behalf of the committee, I extend a warm welcome to: Ms Lorraine Egan, chief executive officer and Mr. Eamon Nash, chief operations officer, from Horizons; Ms Siobhán Bryan, chief executive offer and Mr. Eoin Mooney, chief operating officer, from the Muiríosa Foundation; and Ms Sarah Jane Dillon, chief operating officer for development, and Ms Angela Colgan, chief operating officer for service, from Stewarts Care.

Before we begin, I will deal with the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against a person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks by me. It is important that they comply with any such directions I may make. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege.

I remind members of the constitutional requirement that in order to participate in public meetings members must be physically present within the confines of the Leinster House complex. Members of the committee attending remotely must do so from within the precincts of Leinster House.

I call on Ms Egan to make her opening statement.

I thank the Cathaoirleach and members of the committee for the opportunity to speak with them today on Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. I am the chief executive of Horizons, which provides services to over 3,500 disabled children and adults, many of whom also experience other co-occurring needs such as autism or physical and medical needs. We employ over 1,600 staff in full- and part-time roles and are embedded in communities in Cork city and county. Our vision is to empower people to live "Your life, your way". For Horizons, Article 19 shapes our vision, mission and values. I am joined today by Mr. Eamon Nash, our chief operations officer, and, in the Public Gallery, Ms Geraldine Grennan, mother of Ioseph, who receives services and supports from Horizons.

In the context of addressing Article 19, it is important to ground our discussion in the experiences of those we serve. While Irish policy and legislation affirm the equal rights of disabled people, a significant gap exists between these affirmations and practical reality. With the permission of Ioseph and his mother, I will highlight the challenges faced by Ioseph, his family, and Horizons as we support them. Ioseph is described as a mischievous young man by his family. Turning 18 this year, he will soon transition to adult services. He is a son, brother, cousin, student, and a much loved family member. Similar to most families, his parents want him to have the same opportunities as their other children. Like many his age, Ioseph enjoys music, YouTube, hugs and connecting with others. He is a wheelchair user with complex support needs, is non-speaking and depends on others for all aspects of his care and support.

Unlike other young men planning their adult lives, Ioseph and his family remain unsure if he will be able to live the life he chooses in his community, as promised by Article 19 and the national human rights strategy for disabled people. For Ioseph, Article 19 means having a choice of where and with whom he lives, an appropriate accessible home and supports that enable him to actively participate in his community and have opportunities that empower him to contribute to society and experience true belonging.

The challenges faced by Ioseph and others in realising their rights aligned with Article 19 can only be addressed with an alignment of policy, legislation and cross-departmental systems and processes. This will empower people to live in their communities as equal citizens. Four main areas require attention. The first is funding. Sustainable funding remains a key challenge. Disability service organisations do not receive multi-annual investment for future planning. This prevents us from responding to the growing demand for services and supports, including developing services to meet the requirements of Article 19. We call on the Government to develop a sustainable multi-annual funding plan for the disability sector, encompassing defined ring-fenced funding streams across all areas including residential services, respite services, home share, outreach supports, therapy services, transport, aids and appliances and personalised budgets.

Accessible housing is essential for upholding Article 19. While initiatives like Housing for All and the National Housing Strategy for Disabled People 2022-2027 exist, there remains a gap between disability service planning and the delivery of housing which meets the needs of the people we support. Policy and legislation must drive housing provision for those who need specialist disability services as opposed to it being a case of relying on stakeholder relationships. We are calling on the Government to embed universal design and universal design plus principles in housing and enact planning legislation which ensures a specific quota of new homes are built to the required standard.

Disability residential services are regulated under the Health Act 2007 regulations, which were put in place in 2013. Regulation is essential for safety and quality but can conflict with the UNCRPD's focus on autonomy and community inclusion. Providers must balance compliance requirements with enabling people residing in regulated services to live as they choose. The regulatory framework requires reform to support flexibility and innovation while safeguarding people. We are calling on the Government to review the 2013 regulations, ensuring meaningful input by people living in disability regulated centres and by disability service providers.

Developing and sustaining services and supports is dependent on a strong, healthy workforce. Investment in the workforce is critical to the delivery of Article 19. We are calling on the Government to support the disability sector to invest in staff development, and health and well-being programmes, in recognition that the State cannot deliver on its requirements under the UNCRPD unless we have a healthy, engaged workforce with the required skills, competencies, expertise and commitment. I thank members for their time and I look forward to their questions.

I thank Senators and Deputies for the opportunity to speak with them today. My name is Siobhán Bryan and I am fortunate to be the CEO of the Muiríosa Foundation. I am joined by my colleague Eoin Mooney, who is our chief operating officer. The Muiríosa Foundation provides services to both children and adults with an intellectual disability and autistic people across the counties of Longford, Westmeath, Meath, Laois, Offaly, Kildare, Tipperary and Kilkenny. We currently provide direct support to approximately 1,200 adults and children and through our clinical services, we support a further 1,000 people. The services we provide include residential, residential respite, alternative respite, adult day, preschool and share-a-break and room-to-share supports.

I want to begin by being clear about the frame I am using. When we talk about living arrangements for persons with disabilities, we are not talking about services or placements first. We are talking about human rights and whether the State meets its obligations under the UNCRPD.

Article 19 of the UNCRPD recognises the equal right of all persons with disabilities to live in the community and enjoy choices equal to others. That right is not conditional on their capacity, communication style, diagnosis, or support needs. It applies to everyone. Too often, living arrangements are shaped by what systems find convenient, what funding allows, or what professionals believe is best, rather than what the individual wants. A rights-based approach requires autonomy as the starting point. People have the right to decide where they live, who they live with, and how they are supported, including decisions that others may often see as unwise. The State's role is to support decisions in line with a person's will and preferences, and not to eliminate risk.

This is particularly important for people described as having complex support needs and for neurodivergent people, whose needs and support preferences may not fit neatly into standard models. Neurodivergent people experience the world differently. Differences in social interaction, sensory experience and ways of communicating mean that people's preferences about living arrangements may not align with what systems traditionally expect or prioritise. It is our responsibility to meet each person where they are, honour different ways of experiencing the world, and not make assumptions about what constitutes a good life. Human needs are diverse, and services run the risk of valuing societal norms over neurodiversity-affirming solutions. Respecting will and preference means recognising that difference does not equal deficit and understanding that autonomy can look different but is no less valid.

If we are serious about consultation, every voice must count, including people who are non-speaking or minimally speaking.

Digital and assistive technologies and other forms of communication support are essential for exercising legal capacity and autonomy. Without them, people are effectively excluded from decisions about their own lives. Consultation cannot stop with families, service providers or professionals People must speak for themselves in whatever way works best for them.

Living in the community is not simply about moving people out of congregated settings. It is about meaningful access to housing, local services, relationships and community life with flexible, person-centred supports. Community-based living works only when systems are designed around the person - not when the person is expected to fit rigid models of care.

Responding effectively requires an all-of-government approach that considers the full life cycle of the people we support. From early childhood - ensuring that families have adequate supports - to adulthood and older age, we must recognise that needs can differ significantly in later life from the general population. Standard older-adult models cannot simply be applied. Living arrangements and supports must be evaluated and adapted so people age well with dignity, choice and fulfilling lives. People are living longer than ever before, which is something to celebrate, but it also brings a responsibility to ensure that later life is lived in ways that truly support people's independence, preferences and well-being and that older age is as meaningful, safe and connected as every other stage of life.

Implementation matters. Ireland has ratified the UNCRPD but rights on paper do not automatically translate into rights in practice. It requires leadership, accountability and the meaningful involvement of disabled people in the design, delivery and evaluation of living arrangements and supports. Living arrangements are not just a policy issue. They are about dignity, identity, safety and belonging. When we describe people as having "complex needs", we are often describing unmet human needs - a mismatch between the person and available supports. When living arrangements are truly person-led, that complexity fades and people flourish. If we truly believe in independent living and community inclusion, systems must be built around people’s will, preferences and rights, including those whose voices are too often overlooked. I welcome members' questions.

I invite Ms Colgan to make her opening statement.

I thank the Cathaoirleach and members for the invitation to speak on the important issue of living arrangements for persons with disabilities. Stewarts Care provides community-based services to over 2,000 children and adults with intellectual disabilities, autism and complex support needs across Dublin, Meath, and Kildare. Our services, spanning residential, day, clinical and respite, are delivered with a clear commitment to empowering people to lead enriched lives based on their own decisions and life choices. Our work is firmly grounded in a rights-based approach continually striving to ensure individuals have the right support in the right place at the right time. However, living arrangements and support needs are not static. They change across a lifetime as individual’s needs, aspirations and circumstances evolve. Services and supports must anticipate change rather than react only when a crisis situation arises. To illustrate this, I will highlight three key stages of life.

In the context of childhood, Stewarts Care aims to support the individual in his or her family unit wherever possible. Through early intervention, therapeutic supports and respite, we work to sustain family life and support the development of life skills that will enable children to thrive and be active citizens over the course of their lives. These services not only benefit children but proactively support and safeguard family well-being. We continue to work closely with the HSE to expand flexible and alternative respite options in response to identified need, including in our regional equine therapy hub.

Moving to adulthood, Stewarts Care supports people across community-based homes and remaining legacy congregated settings. We continue to embrace the HSE’s Time to Move on from Congregated Settings policy. Transitions to community homes are planned and person-led resulting in people now living as neighbours and exercising greater choice and control over how they live. At the same time, we continue to work closely with those who remain in a congregated setting to explore their preference regarding their future living arrangements. For those who wish to live more independently, Stewarts Care supports 34 people in independent living with further individuals awaiting housing allocation and others due to commence our supported independent living training programme.

Meeting this demand requires co-ordinated action across disability services, housing and community infrastructure. No single sector can deliver this alone.

Adult respite remains a vital support. Last year, Stewarts Care provided over 3,000 adult respite bed nights. Yet continued investment in respite, including alternative models, is essential if we are to sustain family living arrangements and enable greater choice for individuals. We also continue to source and adapt homes to support individuals to age in place. However, this model is not without its challenges notably the constraints posed by the current housing shortage and the limited availability of universally designed homes. We must consider what happens when an existing home no longer meets the changing needs of the person living there. Where does that person live then?

As life expectancy for people with intellectual disability increases, we are presented with a welcome challenge, namely, how best to support people to age well and live fulfilling lives. We know that people with intellectual disabilities experience age-related health issues far earlier than the general population and many have reducing circles of support as they age. Together, these factors often lead to inappropriate placements in nursing homes. As a sector, we must think differently and plan earlier for ageing with intellectual disability. Too often, sector responses are crisis driven. Decisions made in crisis do not always reflect the person’s expressed will and preferences. We risk making decisions about people, rather than with them. It is incumbent on us as a sector to create innovative and responsive pathways that provide a suite of living arrangements for people at all stages of life, acknowledging changing needs, respecting individual choice and understanding that there is no one-size-fits-all solution. Stewarts Care remains committed to working with the Government, the HSE and our partners across the sector to realise the full intent of the UNCRPD and to ensure that living arrangements genuinely reflect people’s rights, choices, aspirations and changing needs at every stage of life. I look forward to engaging with committee members.

I thank Ms Colgan very much. I invite members to put their questions. As members know, we will speak to the agenda items that we have scheduled for discussion. Members have seven minutes each. As per the rota, the first speaker is Senator Harmon.

I was listening to the witnesses' contributions remotely on the way in. I got everything. That was a comprehensive overview between the three organisations. A number of things stood out to me, including the focus in terms of housing, universal design and adaption, the need for multi-annual funding, the need for a review of the 2013 regulations, the emphasis on workforce planning and the need for us to fully uphold the UNCRPD in practice. When we talk about community living, it much more than decongregation. What struck me is the emphasis on living arrangements, the need for holistic supports across the lifespan and the emphasis on respite as part of that.

I have a number of questions. I will direct them to the witnesses from Horizons initially. Regarding staffing, what areas does the organisation see as urgently requiring more staffing focus and development? What can the Government do in relation to that? For example, in Cork the organisation employs 1,600 people. How could the Government better support those initiatives and the organisation in that regard? I have a broader question for all the witnesses. What do the witnesses think are the primary barriers to full compliance with independent living principles and Article 19 in Irish law?

I will start with the first question. I thank Senator Harmon. It is good to see her again.

Difficulty with attracting and retaining staff is an issue nationally, as we know, and it is particularly prevalent in the health and social care sector. The reality is we are all, in effect, buying from the same pool. For the disability sector, and the health and social care sector in general, there is a unique challenge in terms of our not being able to offer incentives. While we have taken some very innovative measures in this regard, we are always looking for charity, in essence, to enable it. We go to companies and ask whether they can give a better discount on health insurance or give us this, that or the other. In contrast, private companies can offer, for example, refer-a-friend bonuses. I am not suggesting we would do that but the fact is they can do lots of things we are unable to do.

There is a need to look at the health and social care sector in general, what the Government can do and how the State can invest in its people. When we are funded for a whole-time-equivalent post, we are funded just for the post. There is even an issue sometimes with training and development, particularly with historically funded posts. With new posts, we might be able to build that in but the funding does not tend to be there for historically funded posts. Members know about the challenges in terms of funding and all of that. We do not need to speak about it today but it adds to the complexity.

We must acknowledge that unless we address the workforce challenges in the sector, we will not get to where we need to be. I would love to see a task force set up with a specific focus on the workforce issue. It would be helpful to get a group together to look at what can be done to support the sector to attract and retain staff.

I will give a local example. Our organisation is largely based in the midlands and we often struggle to apply resources to initiatives that would really focus on our future workforce. With a commitment received last year, we decided to write to every secondary school in our area and organise information events. They were not like careers events; they were very dedicated sessions. It was extraordinary what we learned. These 16- and 17-year-olds, who are making decisions on what to do after school, are the workforce of the future. We were struck by the number who did not know there was a career pathway and employment opportunities in our sector. They did not know that they did not have to go to college and that there was a pathway to do their Quality and Qualifications Ireland, QQI, training through their local education and training board, ETB.

There are so many things we can do to promote the sector. All too often, however, what we see in the public domain and through media sources are the stories of crises and the struggles people are experiencing. We do not get to talk about and celebrate the amazing experiences a career in disability services brings. We need to do far more in that area. A task force might be able to address the issues from a State perspective. We also need to do much more in terms of informing ourselves, as a nation, about the sector and about the contributions the people we support can make when we knit all of that together.

My colleagues have addressed the staffing issues. I will respond to the Senator's question about independent living and the challenges we face as organisations in that regard. It would be remiss of me not to mention the housing crisis in the context of availability of accommodation. We have all mentioned universally designed homes. Most of us live in two-up, two-down house that are not suitable for the challenge of supporting people with mobility issues or complex issues.

We engage with the local councils and housing authorities on availability but it really is a waiting game. We have several people who have gone through our independent living programme who have the skills to and are ready to live independently but there is not the availability of homes suitable to meet their needs. Quite often, we are offered, for example, an apartment that has an upper floor or an apartment with neighbouring apartments, which, due to the complex needs that may be faced by someone we support, would not be suitable for them. We have a remaining legacy congregated setting where we are trying to support people with additional complex needs and mobility issues. The housing offering out there just does not meet those needs. We really need to come together to look at what living accommodation and universally designed options can be made available to support people with disabilities, mobility issues and complex needs.

I have 20 seconds remaining for a quick question. How do the witnesses see disabled people being included as part of the review of the 2013 regulations?

HIQA already has a number of avenues whereby it consults with people. It holds a lot of forums. It would be a very good place to start if the regulator were to be involved in that conversation.

We can do it through our national federation and other bodies that represent us as well. Ms Bryan mentioned earlier about people who are non-speaking and communicate in other ways. It would be really important that we include everyone's voice and that it is not just the people who advocate a lot. We need to support that as well, but we do have a lot of people who require support to communicate with us. That would be very important.

I thank the witnesses for meeting us and for the huge amount of information they have given us in their opening statements. I always enjoy the question and answer session because every day is a school day. I thank Geraldine and Ioseph for sharing their lived experience. I have some general questions for the three witnesses. The Department of the Taoiseach has formed a cross-departmental task force. Are they involved in that, or do they feed suggestions and so on directly to the HSE to be relayed to the task force by the HSE? We absolutely appreciate the huge work the witnesses do with the communities they serve, given the recruitment challenges they have. I hope things are moving in the right direction in terms of the WRC. Can we have an approximate breakdown in terms of WTEs for each organisation? For Muiríosa, what is the number of homes you have in County Meath? In terms of the link with the community, I am interested in how your community supports you and how your clients participate, whether it is work, education or social life. I have one suggestion. I presume there will be another round so I will not throw everything in. On the ETBs, I think Ms Bryan mentioned the partnership. Dunboyne College of Further Education in its social care courses has gateway courses for occupational therapy and speech and language. They are a fantastic resource as well, through Catherine Fox, the principal. On respite, I would like to hear about the share a break and room to share supports. I commend Stewarts Care on the equine therapy hub that has expanded services to local primary schools in the Meath and North Kildare area. Well done on the inclusive education piece and supports for children. That is excellent. I am sorry I have mixed questions with commentary; I apologise. The witnesses get where I am going.

On the share a break and room to share schemes, it is wonderful the Deputy asked that question. It is an extremely value-adding service that was pioneered in the midlands by a former colleague at Muiríosa. It is sourced locally within a community, a child or an adult may be identified. Share a break is the respite version of it and falls under alternative respite. We advertise locally and families will host the individual and provide the service within their own home. They are not employees of Muiríosa but they receive a payment and it is a social work-led service. It is an extraordinarily value-adding service for many reasons. The costs associated are significantly less. One night of respite in a share a break setting is approximately seven times cheaper than one night in a residential respite. We can quantify that from a monetary perspective but actually it is the experience the child, young person or adult has, because they are receiving their support in a family home with all the normal activities of living, matched to someone that meets their needs. There might be similar interests or another child in the home. In 20 situations, as time has passed, a room to share placement evolved, where that became a permanent living arrangement for the individual. I hope that answers the Deputy's question.

Yes, thank you.

On the numbers of WTEs, I can give the Deputy the breakdown. We have 1,600 staff and that is approximately 1,200 WTEs. I do not have the exact breakdown. We have a lot of people who work more than half time, a lot of 0.6 and 0.7 WTEs. That is the breakdown of everything from a 0.5 WTE to full-time.

We have about 1,200 whole-time equivalents in Horizons as well, which equates to 1,600 staff because of the part-time roles. Again, that leads into our work-life balance piece. It is really important we have flexibility to retain our workforce.

We have a very female-dominant workforce, that is the reality. There is a need for us to be flexible to meeting the needs, particularly at stages in people's lives where they may have young families. The Deputy also asked me about the number of houses in Meath. We have a total of 142 residential houses and only about ten of those are in County Meath. That is largely because we finalised decongregation of Muiríosa last year. It would be homes that decongregated from the original setting in Delvin the Deputy might be familiar with.

On staffing, similar to what Ms Bryan and Ms Egan have said, we have 1,600 staff. I do not have the exact breakdown of WTEs. We pride ourselves on not reducing and not having any agency staff within our organisation. We try to maintain that and recruit staff to ensure the people we support have consistent staffing who are familiar to them, so we do not have a rotating staff coming in. We have 58 homes in the community and have recently expanded out into the Meath area in terms of finding homes. That is down to the availability of homes and trying to find suitable accommodation to support the people as we do.

If I can come in on links to the community, that is a very intentional journey that we take with individuals. It is a very individual journey. There is a whole process of working with skilled and trained staff. We have referenced workforce. It is about working with them, that the person has envisioned their life in a community, how they show up and support them to do that, to take on valued roles. The Deputy mentioned employment and that is a key role to support them. It enhances financial sustainability, social circles, and work opportunities for them. Initiatives in supported employment really support positive community living for individuals.

What format does that take? Is it through Intreo, the local authority, volunteering, or partnering with other organisations such as de Paul or Enable Ireland through retail?

In essence all of those could facilitate an individual journey. It is about working with the individual, matching their skills and assets, what they can bring to the workforce, and engaging with employers and skill-building programmes. They could be provided by a provider like ourselves or it could be Intreo. It is very individual but it is tapping into all existing resources.

Apologies for not being here earlier. I was attending the health committee at the same time as this but I had read the opening statements. When we come to independent living and supports, what are the main barriers for service users?

For us, the first barrier is housing. It would depend on the complexity of someone's needs. Some people can go on our local authority housing list, be assigned housing there and then get the level of support they need through the HSE and one of our organisations providing the service. For people with more complex needs, this is why I referenced Ioseph's journey. Geraldine, his mother, is here today. He would need a level of housing that would not be available through the local authority. That creates a complexity for us in delivering that. Housing is a huge issue for us. The other piece that can arise is around budgeting in terms of personalised budgets. I know the committee has looked at that in previous iterations. A lot of people are looking more for personalised budgets. There has been a project around it. However, it does not always suit everyone in its current format. There are a lot of legal implications on the family to take that on. There probably needs to be more work done on that and how it could arise. The last piece I will discuss is around looking at how and with whom people live. Individualised living can turn into one person in one house, and there is a risk of isolation there. We are very conscious of that as a sector and we have lots of conversations with our umbrella body, the national federation, around how we can support people to have those community connections so they are not isolated when they potentially live alone. Ms Bryan might want to add to that.

A barrier in a broader sense, when we take a helicopter view, is how a very paternalistic view is still taken by the State and citizens, which we see as very prevalent in communities. If someone wants to have the experience but their neighbours do not see them as active members of society who do not necessarily need someone to look after them but need to be enabled, supported, facilitated and connected to the local community, this is definitely a barrier. Our experience has been, particularly for neurodivergent people whom we support, that society is designed for the neurotypical experience. We have to get better at creating neuro-affirmative experiences for all of us because it benefits the human condition. This definitely is a significant barrier for a lot of the autistic people we support who want to live independently.

People's lives are fluid and things change. There has to be some flexibility and adaptability. At points of their lives, people need more support and this model of independent living needs to have this layered into it. The committee has had recent engagement and discussions on personalised budgets. These can often be seen as something separate or different to service providers. Our purpose as voluntary providers is to serve our communities. We want the people we serve to have every available option, including personalised budgets. I know it is under review and the HSE ran a pilot which will shortly be published. I do not think this went far enough regarding the evidence it may be able to produce. We are absolutely open to working with the State and all stakeholders to provide all of the options.

To bring it back to the person, it is about being able to support the person on an independent living journey that reduces risk and minimises the risk for that person. If any of us engage with a lease on a rental property we do so knowing we can terminate it but our engagement with local authorities is that if a person accepts a tenancy agreement which then does not work out for whatever reason and there are difficulties, the person's future access to accommodation from the local authority is quite limited. It is about having resources available to support people to engage in independent living training programmes in which they may have the opportunity to experience this independent life with whatever supports they have. Stewarts Care's independent living programme uses the training department that allows people to look at compatibility and experience it without the fear and risk of losing a tenancy and having limited options in future. Resources to be able to expose people to independent living is very important in the sector.

The model is working but are there changes or reforms the witnesses would like to highlight, which they think need to happen in terms of delivery and of support for older people and younger people in the services? This is a general question.

In our opening statement we spoke a lot about people ageing and about being proactive rather than reactive. A lot of the time we are crisis driven. With regard to planning for the future and supporting people as they age, we know there is a high number of people who live at home with elderly carers and who require a long-term plan and options. The availability of respite is important to enable them to know what it is like to live outside the home and beyond the family and to give families this security. It is about us getting to a stage where we are more proactive than reactive and crisis driven. We really need to come together collectively to look at what options are there for families in long-term planning.

I will come in on the funding aspect of this because it comes back to my opening statement on the funding streams available to the sector. We do not have any multi-annual planning or anything to allow us to plan for the future. A lot of our planning is crisis driven because of this. Alternatively, we are waiting for a placement to arise and, sadly, it arises as a result of someone else passing. As people live longer, and Ms Bryan mentioned this in her opening statement, we are in a situation where we have a huge cohort of people who are ageing really well but we need services for them. We also have younger adults with very complex support needs, often young males with autism, and we have not had the funding to allow us to plan for them. It is critical that we plan for the future and that there is some commitment. While I completely understand why we have annualised budgets and the Government the way all of that works, we need to sit down and look at how we resolve this.

If we receive a commitment from the Government we will create the plans. We have the plans and we have them ready. We will enact them but we need a commitment to this because otherwise we are in a situation where the only funding that becomes available is when something becomes a crisis and then the options are very limited.

I thank the witnesses for coming before the committee and taking time out of their very busy schedules. I thank them for the work they do. They all do fantastic work. This is a very important topic, not only for the person with the disability but for their family. Sometimes there is not a combined approach to dealing with a person with a disability that includes the family and vice versa. It is a very important topic. I have one question for each of the groups in this round.

My first question is for Ms Egan or Mr. Nash from Horizons. I acknowledge Geraldine's presence in the Public Gallery and thank her for allowing Ioseph's story to be recognised. I like the way he has been described as a brother and a son. Often the person is defined just by a disability rather than their huge contribution to family life and to the public. With regard to housing, the gap between disability service planning and the actual delivery of housing suitable for someone with a disability was highlighted. What legislative or regulatory levers do the witnesses from Horizons believe would most effectively ensure that a quota of new homes is built to full standard for someone with a disability?

In the context of housing, earlier in the opening statement Ms Egan highlighted universal design plus. We need to take into context our HIQA regulation. We need to ensure houses are built to a particular standard, not only in terms of universal design plus but also in terms of meeting the community dwelling code and other standards. This is a very important distinction. For example, somebody who might live more independently may not need this level of standards in the house structure itself. What we are asking for is a mandate around a specific quota of social housing, or in any development, in the context of building these bespoke service houses. In terms of how many this would be per development, we could align it to various things, such as how many people on the housing list in that particular local authority have these complex needs or to the percentage of the population. There are many different areas we could align it to.

At present, we are relying on retrofitting existing houses. We have data that shows if we retrofit a standard two-up, two-down house to this higher level it costs in the region of 40% of the acquisition cost. We know that if we were to front-load this and implement it at the design and planning phase, it would cost significantly less and would be in the region of 12%. There would already be savings there per unit per person. It makes economic sense to input this at the planning and design stage rather than waiting. It would mean more finance in the coffers to support other areas also.

My next question is for the Muiríosa Foundation. I have a big issue with regard to non-speaking people with a disability. I worked with people with a disability in a former life. I always say that non-speaking does not mean non-communicative. The eyes and the face communicate. On the other hand, the eyes and facial expressions are not enough to tie down a decision. More assistive technology would be more suitable. In an ideal world, what technologies would the Muiríosa Foundation like to see available to non-speaking people?

I thank the Senator. I am really glad she asked that question. It is a huge priority for our organisation at the moment. We just launched our most recent strategic plan. There was a recognition that the voices of the people speaking were extremely front and centre in the design of it. Regrettably, the voices of too many people we support were not included. It is a big part of our strategic plan and we are in the process of developing an augmentative and alternative communication, AAC, assistive and communication devices library. We are only starting, but we have some wonderful recent examples where people in their 40s have for the first time had an opportunity through the library to hire, at no cost, access to eye gaze technology. This is a person who has been unable to communicate in a way through words and then, all of a sudden, we are having conversations. The perception of a person’s ability was entirely influenced by the fact they were non-speaking, but then they got access to a communication device. It connects with so many other things this committee engages with, including the Farrelly report and the fact that the voice of Grace was not able to be front and centre in it. It is absolutely on us as a State to ensure everybody has the opportunity to access this.

Absolutely.

We have some wonderful people working in the sector with a particular interest in this area. I feel at the moment that the funding mechanisms and streams are very structured and for a particular purpose. Our funders, who work closely with us, and we work in partnership with the HSE, do not have the discretionary budgets for innovation that meant I could go to them and ask for more funding. These are small, one-off investments that we require to get started because a lot of this technology is very expensive. The library for us, therefore, is the perfect way to go, but I need to have far more people to support the library to get more people accessing it. I hope that answers the Senator’s question.

Yes. In the short time I have left, regarding people with a disability ageing faster and often being placed inappropriately into nursing homes because of their deterioration with regard to ageing, what alternative ageing-in-place community-based models do Ms Dillon and Ms Colgan think the State should develop?

I think we need to open up new pathways. Currently, there are very limited choices when we compare the situation with the general population. It is about exploring all the expertise in relation to concepts of retirement villages and specialist services that may be facilitated by repurposing some congregated facilities to support people with specialty needs to age in place. An example would be dementia services. It is about opening mobility pathways for people to consider. At the moment, there are very limited choices available and in that crisis situation, when their placement no longer works for them because of presenting needs, the nursing home is, unfortunately, being considered as the first and only option.

It is a pity.

Yes.

I thank Ms Dillon.

I thank Senator Murphy O'Mahony. I now call Deputy Ruairí Ó Murchú.

Cuirim fáilte roimh na finnéithe. Disability housing is no different to any other issue in relation to disability. It is about allowing somebody to be all that they can be and to live their life in a society that we have created and that does not always make it easy. I suppose this concerns everything from housing, including universal design, and the provision of services that work for people, whether those involve personalised budgets, some sort of home care package or whatever else facilitates people, right down to residential care. Obviously, we are in the age of decongregated settings.

A number of witnesses brought up the issue, and it has been brought up with me many times before, of the sometimes reactive nature of this situation and circumstance. We could quite easily, to use a terrible term, gameplay and have a proper route map. We generally know the number of people we will have on average, but we never allow for it. Therefore, somebody ends up in hospital. My understanding is that - the representatives from Horizons can explain how their model works - in an awful lot of scenarios, for-profit-type operations can step in because they can far more easily draw down money and also charge a lot more. I ask any of the witnesses to comment on the numbers we are talking about and about the cost this could be to the State, while accepting we want to see the best care and whatever else. I am thinking that we are now missing out on all elements. We are doing it reactively. When there is a disaster within a family that might just not have got the supports or when circumstances change, possibly due to a death or whatever, somebody ends up in an emergency room and then the private sector kicks in at a much greater cost.

I think this links very well with the funding streams I brought up in my opening statement. The funding streams are very limited now, and this is why I raised the matter. We need to look at that because we get funding for day service placements. We get some funding for respite, but it is limited. In recent years, it has been focused on children, and I am conscious those children are all becoming adults now and we do not have enough respite for adults, not to mention those adults who do not get respite. On residential funding, only an emergency residential funding stream is available at the moment. This means we are not able to develop. We run extremely tight budgets-----

Would Ms Egan have a notion about what we would need on a State-wide basis? Do we need 200 or 400 places to be there to ensure we do not always end up dealing with this reactively?

Ms Bryan has that data.

The disability capacity review commissioned by the Government has that pathway mapped out to 2031 and it presents with two different components, namely, the likely emerging emergency need within a year and the overall backlog of needs not met in prior years. Although I may stand corrected on this, my understanding is that, as we stand still, 90 emergencies will happen across the country every year.

We need at least 100 places.

Yes, and that is not even dealing with any planned placements or people who had emergency needs last year but did not get places and move on to them. That is the disability capacity review. The disability action plan is the plan to implement those recommendations.

Could anyone give me an average in relation to what the cost is? We are talking about those with complex needs, and I get it is an average and it is a horrible thing to do, but could we work out that price? Does anyone have a notion as to how much more expensive some of the providers that step in in reactive situations are?

Unfortunately, probably none of us witnesses is in a position to answer that-----

Yes. Anecdotally, though. I believe it is considerable and amounts to hundreds of thousands of euro a year.

What I would like to say is that, as a voluntary sector, we want to be able to respond, even when it is an emergency. Obviously, our preference and vision as organisations are to meet people not in crisis. Of course, there are things that cannot be foreseen on a Friday evening in a hospital, for example, like a bereavement. In a lot of these situations, though-----

It can be.

-----we are seeing it for two years beforehand and we know it.

It is older parents.

The HSE does not have budgets available that allow it to intervene at an earlier stage that would prevent the ultimate cost impact of the crisis when it arises, and the very high cost of that. Muiríosa has been able to respond on a few occasions. I may speak to why we often cannot respond. I can think of one gentleman who, as a school leaver, we got to know for a very short few months, but that was amazing for us when the emergency happened because at least we knew him and we had some staff who were familiar with him. However, the risks had escalated to a level where two-to-one staffing was identified as the only way we could transition into a residential service. Within the first few months, we worked so hard to get to know him and get the right staff and the right environment. That is when he started to flourish. Within a year, we were able to reduce those staffing requirements. The voluntary sector is very committed because we see that if there is an over-resourcing here, it will benefit someone somewhere else. Ultimately, on a Friday evening, the biggest thing that inhibits me from being able to be the person the HSE rings is that I do not have an empty building that is registered. We cannot bring people into undesignated centres.

There are people who do have registered buildings.

There are things that the State can do to help the voluntary sector to have the empty buildings so we can respond.

I agree, but I am right that it is only the private sector that has those registered buildings ready to go. Just as the HSE can, those private providers can work out that there are going to be about 90 reactive cases, so they are ready and willing. I am not taking away from the fact that they may offer a very good service, but it is going to be more expensive.

For a variety of reasons such as a bereavement, there are occasions when we may be able to respond, and the HSE will know that because we will have immediately let it know that we have a vacancy. It is probably one of the things we would love to do more of. Regrettably, though, we are not able to prepare in this regard. We still do not advocate for a model that is just about having empty buildings and bringing people in when they are in crisis because that is not the way to support them in transition.

No. In fairness, I am just trying to make the point that we are not dealing with the reactive care situation. Ms Bryan has already stated what the best scenario is. It is where the system has a connection with somebody, is finding out what their needs are and addressing those. Be it in a decongregated setting or particular accommodation, it is about making sure that is appropriate accommodation with the right services.

In some cases, as Ms Bryan said, we can review that from the point of view of removing what is necessary. Ms Bryan has stated what is needed. At this point in time, we are not doing a sufficient amount of that. We know what is coming, we are not budgeting for it and we are just dealing reactively. It is costing more and it is not beneficial to families. In some cases, we are talking about families who have been through the wringer and are worried about this for years.

The Deputy kept to his time for a first.

Sorry, Chair?

You heard me. You kept to your time for the first time ever. Well done on that. We will move on to the Social Democrats. Deputy Quaide has seven minutes.

I thank the Chair. I am not sure if I can make the same commitment.

I thank the service providers for being here. I welcome this session. The more I examine disability services across the country, the more I am struck by the patchwork of provision that has developed over time. A lot of that seems to have been according to tradition more than anything. For instance, depending largely on whether one lives in east, west or north Cork or which part of Cork city one lives in, his or her service provider could be Horizons, St. Joseph's Foundation, the Brothers of Charity, Enable Ireland or CoAction. We have the Muiríosa Foundation in the midlands, south-east and Dublin commuter belts and Stewarts Care in Dublin and surrounding counties. We have many more service providers throughout the country. There seems to be a remarkable arbitrariness to the remit. It does not follow the geography of health regions or any other structure that I can make out.

I very much recognise that all the organisations do invaluable work within their catchment areas. However, stepping back from it, we have to ask whether it make sense for services of such national importance to be provided through so many distinct entities and whether that inevitably results in disjointed working and major variation in what people can access depending on where they live. Does it lead to different service cultures within different organisations? From my own background as a psychologist, I am very aware of the pressures and shortcomings in mental health services in particular. That is where I worked for most of my career. At least there was one single strategic public service framework - A Vision for Change - that set out in a systematic way staffing levels and service provision per head of population under one commissioning authority, which is the HSE. Unfortunately, Sharing the Vision dispensed with a lot of the benchmarks, but we had a seminal document in A Vision for Change. Is fragmentation of services an inevitable feature of a system that is built around multiple State-funded voluntary providers alongside a growing number of private for-profit operators? What do the witnesses think of the idea of a single national strategic framework under the HSE for disability services that sets out, in a much more systematic way, how services can be planned into the future and co-ordinated?

In all our opening statements, we identified that we all have different angles and provide services in different ways. Supported independent living will look different across all three of our services. Is that an injustice to the people who are accessing services and the equity among people? No matter where they live they should have access a service and a good service at that. There is value in looking at a co-ordinated approach and not working in silos. We can learn an awful lot from each other in terms of what we do. We look at individualised support. We look at how we decongregate congregated settings and how we move care to the community. There is value in working together in a co-ordinated approach. The most important thing is the people we support and making sure that they have access to services no matter where they are.

To the Deputy's point on mental health, I have a background as an advanced nurse practitioner, ANP, in mental health and intellectual disability, ID. Depending on where a person is in the country, their access to a mental health and intellectual disability team is varied. It does not matter if I live in Dublin, Galway or Clare. If I have poor mental health, I should have the same access to the same services. There is absolute value in looking at a co-ordinated approach to supporting people and ensuring that voluntary organisations can offer same services. If one model is working really well, then we should be working together on a national framework to make sure that we can deliver that service no matter where the geographical location is.

Is there currently any forum where the service providers come together?

Yes. We are all members of the National Federation of Voluntary Service Providers, of which there are 54 members. Our membership covers the services provided to 70% of people with a disability in Ireland who are in receipt of a service. The federation does a huge amount of work that standardises the way in which we work so that we are not reinventing the wheel in using the precious resources that we have.

Just very recently, an initiative called bridge to community has been established by the federation. There are now 39 of those members signed up to it. I think all of us here today are signed up to it. It is a space for us to now come together to reimagine what the future can look like. A small budget has been allocated. I cannot emphasise enough that giving time and resources to innovation means that the voluntary sector is incredibly vibrant. We have had a challenging decade with the introduction of regulation. It took us all back a little bit to adjust to that. There was a pandemic that completely took us away from our vision, mission and values. It took us away from all the things that we wanted to be aspiring to. We are still in that recovery.

In relation to if everything was standardised, my comments in my opening statement are to emphasise that there is no size fits all because it is about where each person is at. My concern-----

It is about per head of population. I do not mean the organisations to provide the same service for every disabled person. Getting back to the forum, we are all aware that when there is any group of people or group of organisations together dynamics develop, and competition develops. How do the organisations come to decisions in a co-ordinated way? Is there any designated person who leads?

Yes. The federation has a series of subcommittees. There is a chair assigned to every subcommittee. There are members. There is a formal structure. One is not mandated as a member. When the federation, which has presented to the committee previously, come together on a position it is on behalf of the members. There are lots of national structures. For example, the provision of day services under New Directions, the national policy, is clear evidence and has been demonstrated through resources that have been able to be acquired through the Department of public expenditure and the evidence that we can produce. That is standardised. We are all accountable to the same data points that can be collected. There are things that can be done to give the State assurances that we are discharging our duties in the expenditure of public funds in the best possible way for value for money for the State and the people to support.

It sound like I will not persuade the organisations to be subsumed into the HSE so.

We are all very proud of our role in the voluntary sector. Community is where it is at. Our legacy and history as organisations and our employees are embedded in the local communities working with people. It is magic.

The debate I have in relation to the voluntary sector is about bringing a lot of innovation informed by research evidence-based practice, national and international. There is a lot of shared learning across the sector but here is a need to constantly ask and reflect questions on how we can do this better in relation to service provision and change models as we go forward and hold on to what is good.

On the competition, I appreciate that can be perceived to be the case. I have not found that at all. As the Deputy knows, I am recently into my role. I find that in the south we also have the southern area federation, which is a subcommittee of the National Federation of Voluntary Service Providers. Just recently, we sat down and looked at that Cork-Kerry piece and what we can do as a group. We are not there saying that we want to expand any of our individual organisations. What we are here for is to provide the services that are required to the people of Cork and Kerry and how we can do that together in a cohesive way. That is our only aim and purpose. We are not interested in making any of our organisations bigger or better, but the each of us want to be the best at what we do. We want to deliver the best services we can in Ireland in line with the UNCRPD.

I thank everyone for coming in and I thank them for their wonderful opening statements. I enjoyed Ms Bryan's opening statement and the fact that she values her role so much. In relation to the share a room scheme - share a break and room to share - I have constituents like that coming in to me, similar to Ioseph, who are moving towards to adulthood. Respite seems like a scary prospect and families would like that ability to have their child to take a break for a weekend or a couple of weeks in the summer with another family where they can be loved, trusted and supported. I am not saying that they will not get that in respite, but it is obviously a different setting with people going home after their shifts. Is that a scheme that is in place in other organisations or is it specific to the Muiríosa Foundation? Will Ms Bryan tell me a little bit more about the differences between them and how they work on the ground?

My understanding is that the origins of it started in Muiríosa over 40 years ago, but there are many organisations across Ireland providing this model of service. Back in 2017, the HSE took on and commissioned a report. It was an overview of the provision of the service to allow for growth, and we have seen significant growth. We have over 1,200 people who access services through share a break and room to share Muiríosa. The Deputy is absolutely right to pick up on it because there are families that need just a little bit of time, maybe once a month, and the idea of putting their child into a residential respite can be so overwhelming, so they put it off and then the child becomes a teenager and there are other concerns such as compatibility. There is no priority list. If you are top of the list then you get the next host. A huge amount of work is done by our social work department, supported by our share a break co-ordinators. We often advertise and we give very specific details so that families knows there is compatibility, for example, if they have a ten-year old and this might be for a ten-year old so there might be compatibility with one of the children who are in the house. It grows over the years. What we have found in the midlands is that families keep on doing it. For example, my mum did it when I was growing up and now I have my family and I engage in the service as well. People can do it and work full time. You can do it at the weekend and in the evening. It is not always overnight; it might be just picking up the child from school, spending a few hours and dropping them off in the evening. It is extremely varied. A lot of the families say that it is a lifeline and it creates natural supports for many people. Retired staff often engage in it.

Another piece is that every voice must count. Ms Bryan spoke about people's preferences on living arrangements, especially individuals with complex disabilities and non-speaking individuals. How is she living that in her organisation at present and what could be considered best practice, going forward? It is very difficult when you have a non-speaking individual who might not be able to tell you what temperature they like, what noises they do not like and what they want their bedroom to look like. How is Ms Bryan doing that in terms of best practice at the moment?

I would love to say is that we are doing it according to best practice at the moment, but the reality is that we are not. We are not serving the people well in Muiríosa who are non-speaking. It is our absolute intention to change that. That is part of our current strategic plan. We got a very generous donation from a local group, which we have invested in putting together an AAC library that allows people to explore different devices to see what might suit their communication needs. I will just give one example of a gentleman who was a school-leaver with us last year. Before this young man got access to a device, the perception was that he had a significant moderate intellectual disability, but we have discovered he does not have an intellectual disability. It was because his voice was not heard. He went through the whole school system and it never emerged. Now, such is his interest, he wants to formally engage in academia.

The best practice is that we must have not just assistive and digital technology; there are so many ways to engage. We must ensure that being non-speaking is not non-communicative. There are so many ways that people communicate. As a State, in 2026 everyone who is non-speaking should be allowed to explore all of what technology can bring to the table.

We have a challenge there in that all of the children coming up now are being exposed at a very early age and SNAs and teachers are now aware of the amazing capacity of AAC, but it is that cohort of people who are maybe 15 and upwards that need help. There are even people in their 20s and 30s, as Ms Bryan says, who may have been assumed to have a learning disability. I had the beauty of seeing somebody get an AAC device who was able to tell me all about space and Donald Trump. He knew everything, but at the time he was being taught to do inset puzzles. It is great for the younger kids coming up now who are all being exposed to AAC, but there is that older cohort that we have to try to help.

The gentleman Siobhán refers to there told us not to leave our strategic plan on the shelf.

He made a video. It would have been an overwhelming experience for him to be at the actual event because he is autistic, but he prerecorded a video for us using his device. He had only been introduced to it a couple of months beforehand. It was just the most powerful moment at the event for him to tell us not to leave it on the shelf.

In the interests of time, I might move over to Ms Colgan and Ms Egan. They both discussed personalised budgets. I am very passionate about this topic. We have a lady in Mayo, Geraldine Lavelle, who had a spinal injury and was left in a nursing home for many years.

She talked really clearly about the importance of a personalised budget when she spoke about her carer being sick one day and somebody just turned up at the house that she had never met before who had to change her and shower her. The witnesses both spoke about it, but they spoke about it not working in its current form. As there is just a short time, I wonder if they could both take 20 seconds to say what big changes they would like to see so that it does work for them.

We need more support to help people enact a personalised budget. For example, they could have the support of an organisation like ours or another section 38 or section 39 organisation. I have found that it does not work for some of them because of that legal piece about people needing to take on the hiring of staff and all of that. There is just a piece of work on the nuances around it and supporting people to understand it.

There is an issue when somebody is not available for work. That happens in our residential respite day services as well. It is an ongoing issue, but again that is about having familiar people and some people who also know the person so if somebody cannot be there on a particular day, somebody comes who also knows the person.

It is important to give the person themselves autonomy in relation to that. We talk about it being out of their control and someone else turning up. If we could work together so the person has autonomy over the budget and how they spend it in order to be able to have the service that they want, it would minimise the risk of that happening for people.

Gabhaim buíochas leis na finnéithe.

We now move on to Deputy Martin Daly of Fianna Fáil. He has seven minutes.

I apologise for being late. I am on the health committee as well. It is a really interesting living piece for people with disabilities and special and additional needs. I am a GP on the ground as well and one of the areas I find really difficult relates to parents who are getting older. They do not see it as a burden, but it is very difficult not to describe it as a burden of care, with insufficient support services in the community, in health and in education over the years, especially if their kids are now in their 50s. There is no planning for a seamless transition into another form of living, other than at home. I accept that we have to take personal autonomy into account and what people want but these are very particular circumstances. I brought it up with the committee previously that a mother presented to me with her 45-year old son who has neurodivergence, generalised anxiety and inadequate access to mental health services. In fact, he has been cut off by them after attending for nine years because he did not make two appointments. That is beyond my comprehension. She has asked to be admitted to a psychiatric hospital herself because she cannot cope any more. She is a widow. Is there any commentary on that? That is one of the biggest challenges we have going forward.

There are over 2,000 adults living at home with parents over 70, and a cohort of those - 500 parents - are over 80. These situations are not uncommon, which is unfortunate. The point we make in our statement is that we are at a junction now. People are ageing and being supported to age well. We commented on how they could be supported better throughout life. We need to look at good solutions through innovative service provision. Collectively, as a sector, we need to proactively go on a journey with the HSE to create those solutions and create new pathways and options for individuals in that situation so they can be proactively developed. It is a new positive challenge for the sector, but we need to embrace it and we need to move forward.

Community infrastructure and access to services are really important. We work with GPs and general adult psychiatry as opposed to specialist psychiatry. There should be understanding that if somebody does not attend two appointments, it may be for very good reason. It should not fall into the same catchment as someone like me not attending two appointments. We need to look at the education of all those different disciplines to make sure that they fully understand disability and can meet the need of people with intellectual disability. It is important to bridge the gap between practice and the implementation of what community infrastructure looks like.

This is more of a philosophical point. It will not to respond to Deputy Daly's patient's need right now. As a State, we have to accept that 45-year-olds do not generally stay living at home with their parents. The paternalistic approach that parents often have from early on is that they must care for a person until they are no longer able to care for them, and so we are denying everyone in that household their human rights.

This goes back to the recruitment discussion. As a State, an overall discussion of what the UNCRPD really looks like in practice is needed. It is recognising families do not have to do this and for her son or daughter, maybe there are things that could have been done 20 years ago that would have promoted not a residential place but maybe something like a home support model with minimal financial impact to the State. However, what will ultimately happen when she is gone or not able to do it anymore, and a crisis happens, is he will end up spending 40 years in a really high-cost placement that may not be reviewed and if you had looked at that across 60 or 70 years there would have been savings. That is our experience.

My experience is if a parent dies it is sorted in ten days, even where something has festered on - I use that word deliberately - for 20 years or more. Ms Bryan is right about a menu of different services. I have another patient and what he requires, essentially, is support in independent living, like in a superintended flat. It is someone who would help him pay his bills and TV licence, get his phone and Wi-Fi sorted and help him with his shopping. Then he can live independently. He goes to the pub for a couple of pints and comes home. We have to think much more broadly about it because a lot of people living with additional, special and complex medical needs are living longer. They are surviving into late adulthood. If we just take Down's syndrome, the increase in life expectancy over the last 30 or 40 years has been considerable, so it is something we need to take on.

Catchment areas were mentioned. It appears that in the area of mental health and of disability we have no choice. If I send someone to Portiuncula hospital in Ballinasloe and they do not like the cardiac department or whatever they can ask me to send them to Galway or Dublin for a second opinion. It does not happen in the area of mental health or disability, and often in primary care services for the people who have the least resources. Have the witnesses any comment on that?

It goes back to that famous word "resources" in terms of ensuring people have access and having sustained models in those areas. There is a national model for mental health and intellectual disability that has been in since 2019 and then in 2020 Sharing the Vision came about. We talk about specialist intellectual disability services within that Sharing the Vision policy, yet if we look nationally we still have inadequately-resourced national intellectual disability teams where we do not have access. I cannot say I want to go to Wexford to access that service, or to Galway. I have to stay within the catchment. We need to look at that in the national framework to see where the gaps are and what the resources are. We say that per 300,000 of population we should have an intellectual disability specialist mental health team, yet on those in some catchment areas, especially in our area, we have consultants but not clinical nurse specialists, the OT or the SLT. We have all spoken about the importance of communication and if somebody has a mental health problem and also an intellectual disability it is so important they have a voice on that and at the moment those teams are not nationally supported or filled. There are vacancies on all of them. We need to look back to Sharing the Vision in 2020, which followed the 2006 A Vision for Change plan. We still have not filled the posts on those teams.

I am out of time but I thank the witnesses very much for their answers.

That concludes round one, so we will move to round two. The first person is Senator Harmon, who has five minutes.

I thank the Cathaoirleach for the opportunity to come in again. I acknowledge those in the gallery, and Geraldine, and we spoke about Ioseph and his story as well. I deeply appreciate it.

I want to give the witnesses an opportunity to speak further on the workforce planning piece, the challenges and whether there are particular areas in terms of recruitment they feel are blackspots that need to be zoned in on. They may wish to speak about retention rates within their organisations. What do the retention rates look like and do they have particular worries there? It is very interesting a call has been made for a task force on workforce planning. Are there countries that get this right that we could be looking to as an example overall or in relation to the workforce piece?

Should I start?

It is not an easy question to answer.

It is not. It is very complex and that is why I feel it needs quite a rounded view. We can all sit here and say this is a national issue. That is often what is said. We say it is everywhere and we struggle attracting and retaining staff in all sectors, which we do. Anyone working in any sector will say that. In the health and social care sector, and in particular for us in the disability sector, we have touched on how important relationships are. Without those we cannot deliver what we need to deliver. It is not the same as another sector where you can bring somebody in because it is about getting a job done. This is not about getting a job done but about relationships and how we get our job done is through relationships. There are pieces around it that do not necessarily need to be very complex either. One of the things I would like to see is funding to allow us to do very bespoke training. That funding needs to allow us to replace staff while we train them. That is the thing that is not often spoken about, but we cannot train our staff unless we also replace them. We need to look at that and to be enabled to invest heavily in our staff.

Ms Bryan spoke very clearly about it earlier, but it is often the poor stories you hear and that is because they are absolutely heartbreaking and they are picked up by the media. However, we could talk all day about the wonderful stories. I do not know if any members got to see the "Nationwide" programme from December we featured on. There were two stories, David's and Benóg's, and they are beautiful stories but they are just two of many in our organisation and out of the whole country. We have amazing stories and we have people who have been working with us for over 35 years. We did long service awards recently for people and it was just amazing. Even something small like that generated such a buzz, but to find funding we could use to buy small long service pins to give people to show our thanks created a huge amount of work on our end to ensure we were not using State money that is for providing a service to do that. We need to recognise that in order for us to attract and retain staff there are very small things we can do, but investment is required. The people we serve deserve that. We need the best people who really - I am going to say it - love the people we support. That is what we need. Love is the thing that will ensure people are safe in services because where there is love you generally do not have to worry once you have the systems, structures and everything else.

It goes back to funding streams and that is why I leaned heavily on that in my opening statement. The HSE, to be fair to it, is limited. It does not have the capacity to give to us. It would give to us if it could. We all have really good relationships with our partners in the HSE. I deliberately use that word because they are our partners in the HSE and the Department, but we do not have the funding streams and that is a particular funding stream as well. It is an investment in our people. We not only need to invest in the people we support but to invest in the people who are supporting them.

If I can add something on recruitment and retention, the kernel of getting success there is the right match of support with individual. The engagement of the individual being supported in the recruitment and selection is key, as is developing pathways so that happens more commonly. That can lead to success. Then we can lean into the bespoke training. Opening up pathways to additional roles through the health and social care professions is good, but bespoke training will match the right person, who might not come from that background. There is flexibility with that and experience has shown that is what works well and that it is where impactful services can really deliver change for an individual and lead them to a rights-driven life.

I thank the witnesses.

Going back to ageing, which is inevitable and ahead of all of us, has a feedback process started from the witnesses? Is there anything tangible or any formal process in train? They say they have plans ready. Are they falling on deaf ears? Maybe they are something we can be privy to so they can become recommendations from this committee.

That is one area that I would like to see our shared engagement in and to move forward on. The witnesses can correct me if I am stepping out of line on this, and I am sure they will if necessary. I think that is so important.

The other area is personal assistance. How relevant is that in the witnesses' organisations? How does that bespoke, person-centred assistance exist, if it does, within their three organisations? Another question is about balancing autonomy and personal choice. Even when a risk is involved, how does each of the witnesses' organisations get that balance between safeguarding and allowing a calculated, safe risk for fulfilment?

I will address the last point. The assisted decision-making Act has been crucial to all of our services, particularly the people we support. Balancing the choice between making an unwise decision and a wise decision is something we all have the opportunity to do. None of us can sit here today and say we have never made unwise decisions. It is about making sure we put safeguards in place to protect people but also allow them to make individual choices and respect that. As organisations supporting people, we have a duty of care to make sure we increase their ability and capacity. We want to make sure they understand the decision they are making. That is a clear role. One of the challenges with that is working with the people themselves and their families because there is a protective element of not allowing people to make an unwise decision even if they understand the full impact of that decision. That is a real challenge but we are lucky, with the assisted decision-making Act, to be able to support people to do that. We need to make sure we allow people to have autonomy but we need to put the scaffolding in place to ensure they understand the consequences of the decisions they are making, put in safeguards where we can, and be there as a support throughout.

Does any of the witnesses have an anonymous working example of how that might play out in their organisation?

We go through a process of discovery with each individual through our personal planning. Through that process, people set goals and we identify how we can support people to achieve those goals. For example, somebody wanted to learn to fly, so we supported them in achieving that goal. In Horizons, we are lucky to have Cork Airport close by and there is a training element in the airport. We were able to support the person to access that and they learned to fly. That was a great opportunity. There was a lot of risk with it, talking through all the benefits but also the pros and cons, and in the initial first phases supporting the person to go there and discuss it with people there. Over time, we stepped back and supported that person to get the bus by themselves to the airport, to have the confidence to go up and talk to the people, and to be able to come home afterwards too.

I am not entirely sure if this is an appropriate example but it occurred to me as Mr. Nash was speaking. We recently supported a lady who clearly articulated that her will and preference was to stop taking many of the medications that had been prescribed for the treatment of her mental health. This is not something we go into lightly but it was her right to make what we perceived as an unwise decision. We supported her to understand what might happen when she exercised the right to make that unwise decision. She did that and we carefully monitored and supported her through it. I will not even comment on what might have occurred in years gone past to ensure a person received their medication. It became a transformative experience for her because she quickly recognised that her mood was starting to deteriorate, was supported through the clinical team and made a decision within three weeks to return to her medication. We did not go into the battle of best interest, knowing what was good for her and saying that she needed to take her medication, but reinforced her in being able to make that unwise decision. Ultimately, as people, we generally decide what the right path in a decision is because we have made some sort of unwise decision in the past. That is what guides us.

My experience so far is that we enable people through the assisted decision-making capacity legislation to be able to make unwise decisions but it does not mean that we as service providers stand back and do not monitor the risk carefully as we support the person to figure that out.

I have one final comment. We have the assisted decision-making policy. We need to educate all around our people and we need courage as leaders to support the local staff and local manager to work with that person to go through that process. What is really needed now is courage from all of us.

I thank the witnesses.

I would like to hear the witnesses' thoughts on the growth of private for-profit services and how they have impacted on the disability sector as a whole because we have had a doubling in proportion of residential services for people with an intellectual disability provided by private companies since 2021. It is up to 15% now. As the witnesses have alluded to, what appears to be happening is that the person with an intellectual disability is almost invariably offered a placement in the context of an emergency and the tiers of support that might have helped to prevent them from getting to that point often have not been there or have been quite threadbare. The private service is able to offer that replacement relatively quickly. That relieves the HSE, which is under pressure to contain a turbulent situation, but then the emergency placement may be hundreds of kilometres from the person's home and it may not be joined up to other holistic supports. People can get stranded there and this can become their long-term destination.

Meanwhile, I have been informed that these private companies are building up property portfolios. They can buy up properties with relative ease from the large sums they are receiving while some of the section 38 or section 39 services may be renting buildings. That seems wrong and at odds with the human rights of those residents to live in their community. It is not remotely economical or reflective of proper service planning for the future. What are the witnesses' impressions of that? What would their organisations need to respond to crisis situations so that they can compete with these private companies? If any of them are renting properties, can they tell me about the pressures of relying on the private market?

We have 142 residential homes that people live in in our service and 46 are relying on the private rental market. It is probably single-handedly the biggest challenge that we have. It is not the only one to be able to respond to the State's need. When the Deputy talks about those property portfolios, under the memorandum and articles of association of the voluntary agency, the assets held by our directors will transfer in the unlikely occasion that the Muiríosa Foundation ceases to exist. An investment in us being able to own properties is an investment in housing for people who require those houses. I could comfortably service mortgages on all 46 of those 142 with the charges of private rent and yet I cannot go to a bank, take out a mortgage and service that as a voluntary agency. If there was one thing to take away that would really help the voluntary sector to become more responsive, it would be to look at what could be done to support us. I know it is complex and will require policy but it is a conversation worth starting.

We will increasingly see landlords deciding to sell those properties that we rely on in the private rental market. We may have to put in €60,000 or €70,000 to meet the community dwelling requirements that our HIQA regulations require, particularly fire compliance. We have to install all of that into a house and a landlord might decide to sell five years later. We are at the mercy of trying to find another rented property. We can, on some of those occasions, go to the capital assistance scheme and apply for funding. In Muiríosa in the midlands, we have been fortunate with some of those situations, but it is undoubtedly an issue.

I think there is a place for for-profit organisations. We need to make sure that we can meet the needs or include the voluntary organisations or HSE if we cannot meet the need. It is about working together and seeing what the choice of people and their option is.

Could the witnesses' organisations not better meet the needs if they got more funding?

In terms of having a range of options, absolutely. If we look at the crisis-driven solutions, take a Friday evening when somebody is in hospital and the only option we currently have is to cancel someone else's respite and potentially increase the care burden. It is about having options. The alternative then is having that vacant property that Ms Egan spoke to in terms of making sure there is the capacity to take in somebody additional, and how that is run and how it is staffed adds an additional complication. Having additional resources and options regarding what we can do to support people would absolutely reduce the need for for-profits. We need to work collectively on what options we are providing for people and giving them individual choices around what choices are available to them.

Do for-profits interact with the witnesses' organisations in the same way those organisations interact with each other as State-sponsored organisations?

No. There is no formal structure there for us to engage with the for-profits.

In regard to social housing in this space, we are asking to be invested in as section 38 organisations around this table but we also need to look at this in the multi-departmental context. The Department of housing is crucial in this space, especially to support the number of people who are waiting for housing options. If we can create those options through social housing, variations of the H 15 or even increased variation within that and also in other spaces, we will be able to create more sustainable housing for people with disabilities. It is not just about us purchasing; it is also social housing so it is multifaceted.

I welcome all of the witnesses. I thank them for the work they do by looking after those who need that extra little bit of support. All the organisations are section 38 organisations. I work quite closely with a section 39 organisation that provides the same supports, which is St. Christopher's Services in Longford. The funding provided by the State sometimes leaves it very difficult for an organisation like that to provide the services, which they do to a very high standard. They struggle sometimes with staff because people are moving from section 39 organisations to section 38 organisations. The Government over time and through the Workplace Relations Commission has given some incremental pay agreements. It is important that we get to a point where there is pay parity because we cannot have people providing the same service at different pay levels. I know personally the very high standard that is provided there by staff. Could the witnesses comment on that?

I am grateful that the Deputy has brought this up because we are all representing section 38 organisations, so we do not have those same challenges. Do not get me wrong; we have lots of challenges around recruitment, but our section 39 colleagues have greater challenges in respect of pay parity.

This is a particular bugbear of mine because I started my career in section 39 and I still think with a section 39 mentality in some ways, but I always bring it down to the basics and I use examples like St. Christopher's Services and Muiríosa. We could have residential accommodations, for example, in the same community half a mile from each other yet the offer of terms and conditions I can put on the table to the employee working in Muiríosa house and that in St. Christopher's are not equal. That, fundamentally, comes down to the rights of the individuals living in those two houses and they are equal under the law and under the UNCRPD so pay parity is absolutely in everyone's best interests.

I do not think we want to be sitting and having a situation where it is section 38 versus section 39. We want pay parity as section 38 organisations just as much, so there is a recognition that everybody is as deserving of the same level of support and we should not be dealing with issues around pay parity. It is good to have the opportunity to acknowledge that here on behalf of our section 38 organisations. We sit on all those forums with our section 39 colleagues.

It would be remiss of me not to say that I worked quite closely with the Muiríosa Foundation in Longford. There are a number of people with intellectual disabilities who are living in my community and I have worked with the staff there. I am a postmaster in the local community in Ballinalee and I know the difference that supported living has meant not just to the person with the intellectual disability, but to their families. I know that first-hand from those families. We see people who might have been in an institution for a number of years now living and thriving in the community.

I thank the Deputy.

Are there any other comments on that? If not I will ask about the difficulty in providing housing, finding housing and any interaction or engagement with the local authorities. How do witnesses find that engagement with regard to, say, getting somebody on a housing list to have housing supported that way rather than through other mechanisms?

Getting people on the housing list is actually fine. We ask all of our day service attendees when they come to us as school leavers to go on the housing list so the local councils are very aware there then of the numbers that are needed. However, they go on the list as individuals so it then relies on us working with the council to say that, say, two or three of the people want to live together. Again, that comes back to stakeholder relationships, which are really important but we need a system where it does not rely on stakeholder relationships. We need more policy, more flexibility around those housing lists and how we would cater for people.

We find, and my experience has been, that nationally the approach varies depending on stakeholder relationships. We would love to see some policy and legislation around that. We have spoken about this before and Deputy Quaide mentioned there being different arrangements in different parts of the country. It comes back to that. We endeavour to ensure that does not happen and we work really closely together as sections 38 and 39 organisations to do that. However, when it comes to outside bodies we do not always have that control, so it does come down to stakeholder relationships then which can be a challenge.

Do the organisations meet with the County and City Management Association, which is the representative body of all the local authorities?

I do not know if the national federation does. I do not think so. We have a local housing group for Cork city and county. We sit on that. That is for disability in general. We find because the statistics are based on disability in general and there is no specific statistics or quota required for specialist disability services, it is not very helpful when we are trying to get the specialist disability services featured. It is in someways more straightforward to provide for people who might have some mobility issues or some other disability as opposed to the type of housing Mr. Nash was talking about earlier in relation to the community dwelling standards and meeting HIQA regulations, fire regulations and all of that type of thing. We would love to see specific quotas required for those type of people who need specialist disability support.

Something we have not touched on to date in relation to housing access is a barrier that exists in the banking regulation system currently around some people's ability to open their own bank accounts. To be a tenant and do transactions around supported community living that is a key fundamental right. We must look at working with the sector to address and look at the barriers that exist when some people are not given the option of opening their own personal bank account. It is a challenge for individuals currently.

Some of the witnesses were dealing with the issue around getting that mix right with regard to safeguarding versus personal autonomy. I have heard others within the disability sector speak about the fact that there are particular issues with the assistant decision-making. In an awful lot of cases they are very good candidates who at times advocated for the change of rules, but another cohort of people are falling between stools. There are particular issues that exist related to banking, etc. We know there is a problem. We have to look at waiving pre-legislative scrutiny because Governmental plans are way behind in the delivery on the ward of courts. That aside, have witnesses come across many of these particular issues that are impacting on the ability of disability services to operate? I appreciate the examples that were given, which were very good in the sense of facilitating somebody as much as possible even in making a bad decision. I am always afraid of issues around mental health services. I could give a whole pile of examples that do not necessarily fall into a positive bracket.

I get who makes the decision on what is a good decision and what is a bad decision.

Can the witnesses answer on the assisted decision-making legislation and the particular issues it is causing at the moment?

It is fraught with challenges for us at the moment because it requires an entire mindset change. Even though, legally speaking, the changes are not quite as dramatic as we understand them to be - because there was not a legal basis for next-of-kin in formal legislation prior to the enactment of the Bill - we are still very much in that paternalistic approach where we see someone making an unwise decision. Now as service providers we are mandated through the law and there is presumed capacity. Where we find increasing difficulty is with, say, people in their 30s and 40s who might have a family member who wants them to make a different decision. Maybe in the past we would have worked one way but the contract I sign each year on behalf of Muiríosa Foundation is in the provision of the service to that adult with presumed capacity under the law. That is where we are having the most difficulty but that is okay because that is a journey we are on. It is a mindset change and it speaks to some of what I said to Deputy Daly earlier on the eternal child mentality. We have to support families to recognise that their child will transition and become an adult and the law supports them in the recognition of their right to make decisions. Of course, then there are lots of things through the decision support services. They adjust and provide support. We find challenges now where someone needs access to support for decision-making and there might be significant challenges and delays in accessing that.

I believe that is the biggest thing and anything that involves the courts in Ireland is obviously a huge obstacle.

They are doing their absolute best and there is lots of guidance on the website. We are on a journey and we are all committed to it.

That is it. I get that every system has to be reviewed and fixed as we go along.

I spoke to someone with very complex needs. They have severe disability and at one stage had been awarded money in court in relation to the cost of their care into the future. It is now impacting on their ability to get into an appropriate setting. I refer to the HSE being able to make that decision and there are obviously means test issues and whatever. Are these issues Ms Bryan has come across before?

We support a number of people who are still under wardship but we do not have that particular experience.

We do not either. Where that experience arises it would generally arise with our HSE colleagues.

It is 100%. I was just wondering. It is obviously a very particular issue that needs to be dealt with.

I will quickly follow on from a question Deputy Quaide asked. What are the witnesses' asks? They have given the ask in relation to the greater level of resources. I get that we need to see what the need is at all levels and provide everything that is required but in pounds and pence what exactly is the cost of putting someone with complex needs into a residential care setting run by the witnesses at the moment?

Ms Bryan made this point earlier that it is very individual to each person.

No, I get that it has to be bespoke but roughly-----

I would hope that we would be able to sit down after this and look at what those specific funding streams are and what needs to be allocated year-on-year. We know this issue cannot be resolved in one year and we will still need an emergency funding stream so they need to run alongside each other. We need the emergency funding but also to future proof ourselves so we are not in this situation in five or ten years' time.

Could we look at the witnesses putting together what they believe are the figures?

We can for Horizons, absolutely. We would be happy to submit that.

The foundation has put some figures together. I should acknowledge that this year, in budget 2026, there is an allocation to planned residential. It is the first time we have seen that in a budget in recent years. A significant investment has been allocated to the provision of services.

Will it cover the need?

We do not have all the details yet. I have a meeting this afternoon and I am hoping.

If the witnesses could come back with that sort of detail-----

Yes. We have voluntary directors on our board so where deficits exist, which is our lived experience, that is one of the biggest inhibitors for us to be able to respond.

We should probably ask Bernard Gloster who is in next door.

I nabbed him this morning, do not worry.

I thank Ms Bryan. Deputy Keira Keogh is next for Fine Gael. She has five minutes.

I think it is worth acknowledging the fact that the disability budget did get a 20% increase this year of €3.8 billion. It sounds like a huge amount but when you divvy it out, it probably still does not go far enough.

Hopefully, we will see 250 extra residential places and 1,400 day service places. Let us see if they materialise. I know it is like the loaves and the fishes in some cases trying to make things work.

Touching on the independent living training programme, which I think Ms Colgan spoke about, what does it look like and do other organisations have something similar? I was familiar with the Award Scheme Development and Accreditation Network, ASDAN, programme with certification around using a bus, making a bed, etc. Is it similar to that or is it a different type of programme?

It is similar. We look at different modules within the component of the independent living training programme. Modules include personal care, money management, food and cooking, household management and also health promotion. Being proactive in people’s health has become a really big part of the programme over the last couple of years. I spoke earlier about supporting people to be able to explore what independent living looks like so we move from people who have lived at home for a long time and do not have those independent living skills or have not even had the opportunity to be at home on their own for a weekend let alone have the perspective of moving into a house by themselves and what that looks like and resourcing that. We have been lucky enough to have a training apartment where we can support people to have the opportunity to go in there where there is reduced anxiety and the support is there. They can share with a companion to see whether they are compatible and if they want to approach a council, as Ms Bryan spoke about, to see about having the opportunity to get a tenancy together. The real component is to support people to have what is a real life experience of actually living independently. You can go into a classroom environment and do independent living – cook dinner, make a bed, clean and engage in personal care – but it is a very different perspective when you move out of home for the first time and realise that you are the only person who can do something. As an organisation, we saw the value of giving people that lived experience because it allows a person to say they are not ready for it and they need to do A, B and C before they progress to that. The real lived experience and real life experience have been valuable elements of that programme and allow people to have that experience without the risk of losing a tenancy or losing financially. If you put a deposit down on a house, you are tied into a tenancy. It is really important to give the lived experience, and the real life format of that has been valuable.

You often meet parents of children who might have a diagnosis of Asperger’s – I know we do not talk about Asperger’s anymore – or ADHD and lack the executive functioning to get them up and about their day. Often, parents do not realise, if they have been caring for someone since they were small and now they are a teenager, that kids in other households are getting themselves up, putting their uniforms on and making their breakfasts and lunches whereas they are still doing that for their 16-year-olds. That transition-----

That is fear for a lot of people around the question of whether they will be able to do it. We have seen some lovely success stories where people have been so proud of their new home and having a house warming where they bring their friends in to celebrate – the things that everyone does in typical society. Your first home is a really big part of moving out. For people with intellectual disabilities to be able to have that experience is valuable, and it is really important for other parents to see that that projection, plan or goal can be achieved.

I have a follow-up question and will then ask for further examples. Has the foundation started using AI such as Goblin Tools or even just ChatGPT for planning the day? I will ask the others if they have other similar programmes.

On AI and assistive technology in homes, when we look at someone moving into a home, it is a question of profiling them to see what needs that person has and determining at the outset of developing what that home looks like whether there is assistive technology that can be put in place to support that person. Partners in Donegal have done this really well by using assistive technology for cookers, lights and blinds and for ensuring that, when they are fitting out a place, it enables the person with additional needs to sustain living there from the outset rather than getting to a point where the apartment no longer meets their needs. The investment at the outset has been valuable in that.

I will go to the others in the short time left.

We have a programme called New Horizons. It supports people to live independently and in community. Similar to our colleagues in Stewarts Care, we also have a training apartment. This is a new initiative. Ms Egan referred to the “Nationwide” programme. There was a programme earlier last year celebrating somebody moving into their new home. I encourage everyone to watch that.

I would like to focus on funding for these types of programme. There is no dedicated funding to support and develop this. We rely on our internal funding structures to move resources here or there and to be innovative in this space. It restricts us in some ways because we have so many people looking for that type of service but it also allows us to be creative in that space.

It is chicken and egg. If we provide more funding there, there will be fewer people relying on a full-time service.

The ask is to invest in this innovative space. There is a requirement to look at this on its own, separate in a way from services that need higher support initiatives. There are many people we support who were in congregated settings with 24-hour health and social care supports who are now living independently with people dropping in and out. We have developed a new model and a different way of working. That is a key part but we need investment in that innovative space to grow it.

I thank the Chair for facilitating me. I am not a member of this committee but since there is a crowd from Cork up, I said I would come in. I will have to go next door because I am due to speak next at the health committee with Bernard Gloster, as was alluded to.

I will ask a few questions. Will the witnesses give an indication of any capital funding their organisations have received from the Department for residential provision alone in 2023, 2024 and 2025, if they have those figures to hand? If not, I will gladly take them afterwards. Do they have ballpark figures for what they received specifically for capital projects?

We did not have any capital projects in 2025 but we have put in submissions with a capital allocation through budget 2026. We are optimistic. Ninety sites have been identified by the membership of the federation representative body and a generous capital allocation relative to other budgets in recent years. If the Deputy asks us this question this time next year, I hope we will have a more favourable response.

The only reason I want to know is I am due to go in next door to speak to Bernard Gloster and I want to be able to say specifically to him that no funding was allocated in 2024, 2025 or whenever the case may. That is why I am interested in the figures.

There was no Muiríosa development in 2025 but some respite services were stepped up in our region. Unfortunately, I cannot give the Deputy anything further at the moment. I will get it.

What is the average waiting time when an application is made for funding like that? Is it years to get a response?

Anything allocated in capital is through an individual budget. It happens in the calendar year.

In those cases, are the organisations given money to bring it through planning and tender? Are there multiple phases to that application and then ultimately an award to actually build the complex, apartment or whatever it might be? How does it work?

Most of the capital funding we are talking about might be for adjustments to existing buildings and redoing roofs and bathrooms, not capital projects for significant builds. I do not know if any of our agencies-----

I might come in there. Years ago, there was. The Deputy visited Horizons. Back in the early 2000s, we got major capital funding to build particular services but that has not happened in recent years. We call it minor capital. It is to make necessary adjustments to services. It is very limited. We received a small bit last year but it was mainly linked to fire safety for our HIQA-registered buildings.

What has happened in the past few years in the provision of new residential places?

We have not received capital funding for it. We use the capital assistance scheme, CAS, model. That is how we have to resolve that issue. We mainly do that for our decongregation programme at the moment but it is limited. We spoke about that a bit before the Deputy came in.

I have a general question. It is a topic I would like to explore over the next few months, which is why I requested to meet the organisations in the coming weeks. Have they engaged with housing bodies? Is there an existing housing body or a new one under one of the organisations' umbrellas that could take this forward? People are coming to a cliff edge at the moment.

The National Federation of Voluntary Service Providers, of which we are all members, has a subcommittee dedicated to housing. It and we as individual agencies meet local authorities and housing bodies.

I have to say that the experience differs depending on where you are in the country. We have been very fortunate. Deputy Carrigy spoke about Longford earlier. It has been a county where we have had lots of great successes through CAS applications, but it is not consistent. Through the federation, we are creating a mechanism to meet at a national level to have those discussions and influence.

I might be parochial to Cork and ask about the engagement with the city and county councils.

We are an approved housing body, so we do have that. We also engage with the city and county councils. I raised earlier in the discussion here things being dependent on stakeholder relationships. We are all very good in the disability sector for developing and maintaining relationships, but what we are really looking for are policy and legislation on quotas for specialist disability services, because that is where we are particularly challenged. Mr. Nash gave the example of how, when we get housing, it costs us 40% more to retrofit it to the standard required. If that had been done at the time the housing was built, it would only cost maybe 12% to 15% more. That type of policy and legislation would be extremely beneficial to the sector.

I have about 20 seconds left, but I did not realise Horizons was a housing body. Could the witness give me an indication of what draw-down or what projects have been funded in the past three years, in terms of the HAP applications?

I do not think we have that, but we can come back to the Deputy afterwards.

We will come back to the Deputy on that outside of the House, if that is okay. We have ongoing projects, especially linking in with councils on a number of things.

I thank the Deputy and witnesses. That concludes our discussion. If any members have a brief comment they wish to make, we can wrap up. Does anyone wish to come in?

I have a brief question.

You have a minute, Deputy.

One of the recurring issues we hear from families is the immense challenges of navigating the system. It can be quite labyrinthine. I find it quite difficult, as a former clinician, because of how disability services are configured.

I recently connected with the Before We Die campaign group of families, and Tony Murray is here with us today from that group in the Gallery. I have heard from some families within Before We Die that some service providers, not necessarily the witnesses' organisations, are not willing to engage with a parents representative group, citing the capacity Act and GDPR as their reasons. What are the witnesses' thoughts on that, and how can we help families to find their way through what is often a very confusing bureaucratic system, particularly for older families, where it can be more challenging?

It is very important. Within Stewarts Care and our organisation, which I can only speak for, we have looked at reconfiguring an engagement and advocacy role for someone to develop family networks and engagements. We see that as a crucial role, particularly with the enactment of the decision-making Act. Everyone has spoken about the challenges of moving from that paternalistic view of supporting individuals and to ensure that families are a crucial and important part of that. It is very important we all invest in making sure we engage with families and strengthen their advocacy role for the people they support as well.

Adding to that, there is an important programme of information and learning for families as part of the policy-making, which can support families gaining more of the system as well as directly from providers. There needs to be an opportunity for families to gain access to that information and for conversations among themselves through those forums.

Does anyone else wish to speak?

I thank everybody for today. It was highly informative.

That concludes our discussions for today. I propose we publish the opening statements on the committee website. Is that agreed? Agreed.

I thank everyone for attending today and for their insightful contributions and aiding us in our work on the living arrangements of persons with disabilities. It is very much appreciated.

We will now go into private session, with the agreement of the committee. Is that agreed? Agreed.