Maurice Quinlivan (Limerick City, Sinn Fein)
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The purpose of today's meeting is to discuss living arrangements for people with disabilities, which is resumed. We have been discussing this topic for a number of weeks. The format of the meeting will be that I will invite the witnesses to make opening statements, which will be limited to a maximum of five minutes each. Once opening statements have been delivered, I will call on members in the rota order to put their questions. I also propose that we schedule a short comfort break at the midway point, which is 11 a.m., and resume shortly afterwards.

On behalf of the committee, I extend a warm welcome to the Independent Living Movement of Ireland representatives Ms Shelly Gaynor, peer mentor, and Ms Aisling Smith, who is a community development worker. Inclusion Ireland is represented by Ms Derval McDonagh, chief executive officer, and Mr. Tomás Murphy, co-chair of the board of directors. The National Advocacy Service for People with Disabilities is represented by Ms Joanne Condon, national manager, and Mr. Micheál Walsh, regional manager. The County and City Management Association is represented by Mr. Eddie Taaffe, chair of the CCMA housing committee, and Mr. Gerard O’Sullivan, member.

Before we begin, I will read the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any 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 a person or entity. Therefore, if their statements are potentially defamatory in relation to the identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction 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, they 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 Gaynor and Ms Smith to make their opening statements.

Ms Shelly Gaynor:

Independent Living Movement Ireland, ILMI, is a cross-impairment national disabled persons’ organisation, DPO, which strives hard to ensure disabled people in Ireland achieve equality, choice and control over their lives. ILMI’s policies and practices are informed by the rights-based social model of disability, thereby aiming to tackle the social and environmental factors that prevent disabled people from enjoying their full rights enshrined in the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD.

Affordable, accessible housing and the supports we need to live self-determined lives in our communities are central to realising the UNCRPD. We believe that this session organised by the joint committee on living arrangements for persons with disabilities is timely and useful to focus on how to progress our rights in an inclusive Ireland.

In our opening statement, we are going to talk about personal assistant services, personalised budgets and accessible housing as being key to an inclusive Ireland. Personal assistance services are essential for many disabled people to live independent lives of their choosing in the community. A personal assistance service, PAS, is an individualised support provided to disabled people who feel they need those supports. Personal assistance services, when fully resourced, can liberate us as we are in control. We decide on the types of support we need. We are at liberty to choose how to use the support be it for employment, daily living, social events, etc.

ILMI and its members have been running a PAS campaign since 2018, which is aimed at building a national PAS system that meets the growing need for such a service. It is driven by five core campaign demands: define, standardise, invest, promote and legislate. Our campaign has achieved considerable positive outcomes. The increased year-on-year State investment in PAS and its priority in the national human rights strategy for disabled people have been driven by the demands of our members locally and nationally.

In our submission to this committee in 2023, we stated that despite being one of the first users of a PAS in Europe, Ireland was one of the few countries in the EU in which disabled people did not have a right to this service. Unfortunately, that statement is as true now as it was then. At the time, the HSE committed in front of this committee to establish a working group that would work with ILMI to co-create a clear definition of personal assistance. Most of that work has stalled due to the lack of HSE personnel to finish the work. As a consequence, PAS is often and routinely conflated with care services, despite the fact that PAS is the preferred model by which disabled people wish to access support services.

Personalised budgets are about transferring financial supports directly to disabled people, so we have control over how the services are resourced and managed. Personalised budgets have proven to be best practice in promoting independence, choice and self-determination for disabled people. Under personalised budget schemes in other countries, disabled people will be able to decide not only on the specific elements of the support service but also tailor support to our real lives instead of complying with the decisions of service providers.

The experiences of other countries such as Australia, Canada and the Netherlands have highlighted the immense importance of personalised budgets in promoting disabled people’s rights for independent living. The Irish experience in this regard has much to be desired. ILMI welcomed the establishment of the task force on personalised budgets in 2018, which was tasked to consider HSE disability service funded personalised social services and supports for all adults.

ILMI produced a position paper on the HSE personalised demonstration models in 2021. ILMI has always recognised the importance of the demonstration models and their potential to explore the process of transition towards a person-centred budget to inform future best practice. We are concerned that progress on this much-needed UNCRPD aligned accommodation service has not happened at a pace and scale to bring sufficient change.

It is also our opinion that disabled people and their DPO, including local DPOs, should be adequately consulted in the preparation of personalised budget schemes that meet disabled people's needs and do not bring bureaucracy to our freedom and choice. I hand over to my colleague, Ms Smith.

Ms Aisling Smith:

We at ILMI are clear that a full and timely implementation of the national housing strategy is of critical importance in order to achieve our rights for housing equality. The strategy should serve as the key policy document through which all the relevant UNCRPD-aligned accommodation services must be secured. This committee's scrutiny on the monitoring and implementation of the National Housing Strategy for Disabled People 2022-2027 is crucial to identifying any shortcomings regarding the UNCRPD-aligned accommodation services.

As part of our strategic plan, ILMI is committed to establishing and supporting the development of local disabled persons' organisations. Many of the ILMI-supported local DPOs are members of their respective local authority housing and disability steering groups, HDSGs for short. It is ILMI’s belief that HDSGs should be very effective forms to ensure that local authority development plans include specific targets to meet the housing needs of disabled people. ILMI is concerned about the lack of sufficient support to DPOs, which otherwise are deemed essential partners in the implementation of the strategy. Despite recognition of the key roles of DPOs to inform the implementation of the strategy, there has not been a structured and multi-annual investment to resource the role of DPOs, including local DPOs. Additionally, we are concerned that the uneven operation of HDSGs across local authorities could further exacerbate the uneven implementation of the strategy in different parts of the country.

In recommendations, we recognise the ongoing support of the Joint Committee on Disability Matters in considering this vital issue and inviting us to reflect the authentic collective voices of disabled people. We hope the committee gives due consideration to the following recommendations: ensure that Department of Children, Disability and Equality research on how other jurisdictions have legislated for a right to personal assistance is published; ensure that the HSE deploys staff resources to complete a review of HSE-funded PA services and works with ILMI to finalise an agreed definition of a PA service; and ensure a clear pathway to realise development of real national personal assistance services. We call on the National Disability Authority to publish its review of the pilot programme for personalised budgets; engage DPOs, along with the Department of Children, Disability and Equality and the HSE on co-creation of personalised budget schemes reflective of the collective voices of disabled people; ensure a new personalised budget system is about choice and control for disabled people, not the State, service providers or increased bureaucracy; and ensure that any future personalised budget scheme ascertains the continuity of service for disabled people through multi-year commitments. Regarding the National Housing Strategy for Disabled People 2022–2027, we request that the committee engage all stakeholders on the status of the implementation of the strategy, particularly from the perspective of the UNCRPD-aligned accommodation services; encourage Government to introduce a multi-year core funding structure for DPOs to support their role in the implementation of the strategy; engage relevant Departments and local authorities in identifying mechanisms to support local DPOs; evaluate the current local housing strategies to ensure that they fit the articulations of the UNCRPD and the National Housing Strategy for Disabled People 2022-2027; and engage with DPOs and relevant State bodies to ensure disabled people are included in both public and private housing.

Mr. Tomás Murphy:

I thank the Deputies and Senators for the opportunity to appear before them today to speak about living arrangements for persons with disabilities.

People with intellectual disabilities have the right to live independently and be part of their community. This includes real choice about where we live, who we live with and how we live our lives. This right is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities. In Ireland, many people still cannot exercise this right in practice. Housing and support pathways are often unclear. Support is often not available early enough. Too often, help only comes when a person or a family is already in crisis. This leads to inhumane responses and can result in people with intellectual disabilities forced to live far away from their communities, in houses with strangers.

Our history in Ireland is one of institutionalisation. At its heart, institutionalisation is about taking all choice and control away from people. Although we have closed many of the bigger institutions, there are still almost 2,000 people with intellectual disabilities living in these types of settings in Ireland. Inclusion Ireland welcomed the policy, Time to Move on from Congregated Settings, and the drive for community living. What remains missing, however, is follow-on legislation and policy which ensures the right to independent living.

Alongside legislation and policy, we also need a change in culture and attitudes. What we cannot see is policy driven by fear, even if that fear is well-placed and understandable. What is badly needed is a rights-focused plan which is co-designed by disabled people and their families, aligned with the UNCRPD, with choice at the heart of it. We need to demand an end to people with an intellectual disability having to live in ways that they never chose because the State did not support us in a meaningful way.

Inclusion Ireland’s evidence shows a clear gap between what people want and what happens in their daily lives. In our 1000 Voices survey, 53% of adults with intellectual disabilities told us that getting a home of their own is a top concern but only 10% had a plan to move out. Forty-three percent of families said they did not have the information they needed to plan for the future.

Estimates indicate that approximately 150 adults with intellectual disabilities are living with family carers over 70, including 450 with parents over 80. These figures show why planning ahead matters. This does not mean there is one single housing answer for everyone. We are concerned when solutions start with the buildings and not with the people. Independent living can look different from person to person.

People with intellectual disabilities are not all the same. For some people, community and independent living means living in their own tenancy with some personal assistance. For others, it means supported living, using personalised budgets, shared living or living with friends, whichever option best matches the person’s wishes and needs. Some people may need a small amount of support to live in their own home. Some of our members at Inclusion Ireland might need around-the-clock constant care and support to live in their own home. The principles underlying independent living, namely, choice and autonomy, should not change based on the level of support a person might need. The key point is choice. People with intellectual disabilities should get the type of home and support that is right for them. Services should be person-centred, should support decision-making and should help people stay connected to their communities.

A home is not just about bricks and mortar. It is about belonging, family, relationships and feeling a part of our community. When we reduce people to numbers on a waiting list or we fit people into houses and settings without really figuring out what their preference, hopes and dreams are, we are still institutionalising people. The buildings may not be similar but the practice and outcomes are the same.

Inclusion Ireland welcomes the recent investment in disability services from budget 2026. For the first time, a number of planned housing supports were announced. This is only the start, however. We are concerned that the bulk of funding does not go towards real community living. This has to change. The Government has already made clear commitments in the National Housing Strategy for Disabled People 2022–2027 and the National Human Rights Strategy for Disabled People 2025–2030. The priority now is delivery. People and their families need to see clear timelines, clear responsibilities and clear results. For us and for our families, progress is not measured by budget announcements; it is measured by delivery. Delivery must be joined up across the Department of Housing, Local Government and Heritage, the Department of Children, Disability and Equality, the Health Service Executive, the Housing Agency and local authorities.

Inclusion Ireland has priorities. First, a national future planning pathway standard with joint accountability across housing, health and disability systems should be set, and a clear, rights-based planning pathway, or a one-stop-shop for housing and supported living in every county for adults with intellectual disabilities and their families, created. This should include a maximum waiting time for first contact, accessible information, a named local co-ordinator and regular reviews. For people using personalised budgets, a solid support structure should be created regionally to take administrative burden off individuals and families.

Second, a housing and supported independent living national policy and implementation plan should be co-created with disabled people, showing each year how new investment is expanding the full range of community-based housing and independent living options, including tenancy sustainment and personalised supports, and housing for those who require more intensive or sustained supports.

Third, the Disability Act should be reviewed and amended to enshrine the right to community and independent living in our legislation.

Fourth, disability disaggregated housing data and reporting should be strengthened and a common data standard across housing systems should be introduced. The Department of housing, the Housing Agency, local authorities and relevant services should publish accessible, comparable data broken down by disability profile, support needs and outcomes. This is essential to measure unmet need, track progress across groups and hold delivery to account.

We look forward to discussing these points and others during the committee hearing.

Ms Joanne Condon:

I thank members of the committee for inviting us today. The National Advocacy Service for People with Disabilities, NAS, provides representative, independent advocacy to people with disabilities. In 2025, NAS provided advocacy support to 1,933 people with disabilities. Some 25% of this work related to housing and living arrangements; 22% to those living in residential and healthcare settings; 13% with the lack of housing options; 10% related to inappropriate housing; and 6% involved under-65s living in nursing homes.

The National Human Rights Strategy for Disabled People 2025-2030 is Ireland's key framework for advancing the rights of disabled people. Yet, it does not emphasise the provision or importance of independent advocacy services. Access to independent advocacy is fundamental to people realising their rights in practice, yet, at the end of 2025, the NAS waiting list stood at 235 people. The Time To Move On From Congregated Settings report of 2011 committed to moving people with disabilities out of congregated settings by 2018. Despite some progress, HIQA’s overview report on disability services of 2024 identified that 25% of people with disabilities living in designated centres were still living in congregated settings. Progress is unacceptably slow and is in direct contravention of Article 19 of the UNCRPD and the public sector equality and human rights duty. A suite of research by the NDA points to significant improvements in quality of life following decongregation and NAS advocates regularly witness the profound negative impact for people of institutional living.

Approximately 1,200 people with disabilities under 65 continue to live in nursing homes in Ireland. A particular concern from our work is the transition of people who have lived long term in disability residential settings into nursing homes. Some people with physical disabilities over 65 have lost their personal assistance and have had to move to a nursing home, despite having no nursing needs. The lack of community-based support and appropriate housing has also resulted in many young people with acquired brain injuries moving into nursing homes. This happened to James, a man in his mid-20s who sustained a physical and neurological disability after a road traffic accident. James previously lived with his parents and was working and saving for a home. Following rehab, he was deemed fit to return home but he did not qualify for adaptation grants and there was no community-supported accommodation available. James had to move to a nursing home where he had no access to personal assistance or occupational therapy. An advocate from NAS supported James to apply for HSE additional supports and to make a social housing application but he was told there would be a lengthy wait. James is unable to leave the nursing home, despite wanting to.

Overall numbers requiring specialist disability services are expected to be 17% higher by 2032. This is going to require a long-term response with adequate, sustainable funding and planning. The national housing strategy for disabled people outlines that there should never be an assumption that an adult with a disability is considered housed because he or she resides with family. Yet, this was the case with Anne, a woman in her 40s, supported by NAS, who lived with her parents. Anne was told she would not be added to the social housing list as she already had a home with her parents. Her advocate supported her to seek legal advice and she was advised this approach was not in keeping with housing legislation. Her legal representative challenged the local authority, which eventually conceded that this was an inappropriate application of the legislation and issued an apology. Anne’s application was then accepted and backdated.

Thousands of ageing parents are providing full-time support for adults with disabilities across the country. NAS advocates have worked with many people in crisis when their parent has ended up in hospital or has died, leaving the person completely unsupported. NAS advocates have also supported many people who have inherited property or a right of residence and who often cannot benefit from those rights due to the lack of appropriate supports to continue living in their homes. NAS advocates report long wait times for social housing, sometimes exceeding ten years. In AsIAm’s Same Chance report, 26% of those represented said their housing situation did not meet their needs. People with disabilities face shortages, inadequate supports and significant issues with the assessment system.

Over 27% of homeless people have a disability. Disabled people are more than twice as likely to report housing discrimination and are over-represented in substandard, poorly heated and unsafe housing. This is due to a critical dearth in wraparound supports for people with disabilities. There are high thresholds in place for support and siloing of funds between disability, mental health, social inclusion and primary care.

It is clear that Ireland continues to have an over-reliance on institutional and inappropriate living arrangements for people with disabilities. NAS calls for: inclusion of the provision of independent advocacy for disabled people in the national human rights strategy and urgent investment and strengthening of independent advocacy; a time-bound and complete closure of congregated settings with ring-fenced funding for community housing; the right to choice, housing and appropriate support for all disabled people in line with the UNCRPD; a national transition planning strategy for adults with disabilities living with ageing carers; the development of a disability-inclusive homelessness strategy; integrated systems and enhanced funding for housing and social care supports; and a long-term and sustainable funding plan to address the growing number of adults with disabilities accessing social care services.

We appreciate being invited to speak today and welcome any further questions.

Mr. Eddie Taaffe:

I am the chief executive of Wexford County Council and chair of the County and City Management Association, CCMA, committee on housing. I am accompanied by Mr. O’Sullivan, director of service with Dún Laoghaire–Rathdown County Council and a member of the CCMA housing committee.

On behalf of the CCMA, I thank the committee for the invitation to attend today’s meeting and for the opportunity to contribute to this important discussion on living arrangements for persons with disabilities. The CCMA welcomes the committee’s continued focus on rights-based, inclusive housing and on the practical challenges involved in delivering Ireland’s commitments under the UNCRPD. Local authorities fully support Ireland’s commitment to Article 19 of the UNCRPD, which affirms the right of persons with disabilities to live independently and be included in the community. In practice, this commitment is reflected in increasing demand for individual tenancies with tailored in-home supports, shared living arrangements and small, clustered accommodation with on-site or floating supports. These housing models align with the principles of choice, dignity, autonomy and inclusion, and reflect an important shift away from institutional or segregated provision.

This policy direction is clearly embedded in previous and current housing plans, such as Delivering Homes, Building Communities, Housing for All and the National Housing Strategy for Disabled People 2022–2027, through the work of housing and disability steering groups, which bring together local authorities, the HSE and approved housing bodies, AHBs, at local level, and through partnership with disability representative organisations and disabled persons organisations, DPOs.

Local authorities provide a wide range of housing responses to people with disabilities, working closely with AHBs, the voluntary and charity sectors, the HSE and other stakeholders. Housing pathways include local authority and AHB social housing, housing assistance payment, HAP, and the rental accommodation scheme, RAS. The capital assistance scheme remains a key mechanism for supporting AHBs in delivering accommodation for priority groups, including people with disabilities, and the role of the Department in provision of funding, including through a range of schemes and grants, is acknowledged.

A central element of this housing response, and a direct enabler of Article 19 rights, is the extensive programme of housing adaptations, extensions and grant supports administered and delivered by local authorities. These interventions are critical in ensuring that people with disabilities and older people can remain living in their own homes and communities, exercise choice and control over their living arrangements, and avoid unnecessary or inappropriate institutional settings.

The tables in the appendix to the opening statement demonstrate the year-on-year increase of grant funding and delivery through housing adaptation grants for disabled persons, the mobility aid grants and housing adaptation grants for older people and people with disabilities. These schemes provide a vital mechanism for supporting people to live independently, consistent with Article 19(a) and 19(b), which emphasise choice of residence and access to in-home supports. The importance of these grants cannot be underestimated, as they are available to both local authority tenants in social housing and also to private homeowners who satisfy the criteria.

Local authorities play a key role in administering these schemes, including assessing applications, arranging home inspections and overseeing delivery where adaptations are proposed. Through this work, local authorities give practical, on-the-ground effect to Article 19, supporting people with disabilities and older people to live independently, participate fully in their communities and, more importantly, maintain dignity, choice and quality of life within their own homes.

From a local authority perspective, there has been meaningful progress in cross-sector collaboration in recent years. There is now a shared understanding that housing delivery for people with disabilities must be person-centred, flexible and responsive and that a range of housing options are required to meet diverse needs. However, local authority experience consistently demonstrates that housing cannot be delivered in isolation. While local authorities are responsible for assessing housing need, allocating homes and delivering accessible and adapted housing, the responsibility for personal, social and clinical care supports rests with the HSE. This separation of functions can create operational challenges. In practical terms, suitable housing can at times remain unoccupied due to delays or gaps in approved care supports, with individuals unable to move into available homes. This can result in families, particularly ageing parents, living with uncertainty and anxiety regarding future housing and support pathways. These issues underscore the critical importance of early-stage planning, improved sequencing and stronger integration of housing and care decision-making.

Housing and disability steering groups have been established nationally to support joint working between local authorities, the HSE, disability service providers and AHBs. Their purpose is to achieve a co-ordinated and integrated approach to meeting the housing needs of people with disabilities. These groups are tasked with preparing strategic local plans to respond to identified and emerging housing need.

While steering groups have significantly improved communication and local problem-solving, their current remit remains limited. There is an opportunity to strengthen their impact through earlier, aggregated and anonymised mapping of likely care and support needs alongside housing demand, individual care assessment with housing pathways and greater transparency and oversight of nomination, allocation and compatibility processes for disability-specific housing. Importantly, strengthening these groups would not require changes to statutory responsibilities, but they would benefit from clearer national expectations, governance arrangements and accountability.

Another emerging issue is the interaction between housing delivery and HIQA regulation. Safeguarding and the quality of care are essential and non-negotiable. However, there is a growing need to ensure that regulatory requirements are applied in a proportionate and context-appropriate manner, particularly where people with disabilities are living in their own homes or in small community-based settings. A more graduated or tiered regulatory approach could help balance safeguarding with autonomy and dignity, avoid unnecessary delays in housing delivery and ensure efficient use of mainstream housing stock.

Local authority commitments to implementing the UNCRPD, the Disability Act 2005 and wider human rights and equality legislation are reflected throughout corporate plans, county development plans, equality and human rights frameworks and all relevant council strategies. For many individuals, the success of a housing allocation depends fundamentally on the timely co-ordination of housing with health and social care supports. The local authority sector will continue to work collaboratively with the HSE, AHBs, service providers and advocacy groups to improve alignment across systems. The challenges outlined today are not issues of willingness or effort at local level but of system alignment, clarity of roles and sequencing and ensuring that housing and supports come together in a timely person-centred way. Local authorities are committed to exploring all avenues of housing provision and tenure to meet the varied range of housing needs of disabled persons.

The CCMA welcomes the committee’s consideration of these matters and strongly supports recommendations that strengthen joint planning, improve transparency and equity in allocations, and support Ireland in delivering on its obligations under the UNCRPD in a meaningful and practical manner.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Mr. Taaffe and I now invite members of the committee to put their questions when I call them. There is a rota in place and each member has seven minutes, which includes answers from witnesses. If we get an opportunity, we will have a second round.

Maria Byrne (Fine Gael)
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I thank the witnesses for coming and they all made very informative opening statements. My first couple of questions are for Mr. Taaffe and Mr. O'Sullivan about working alongside NGOs, the HSE and so on. How are housing needs assessed for people with disabilities? Are they assessed differently in terms of different people needing different facilities or resources? Do they believe that targets are being met across the country?

Mr. Eddie Taaffe:

When a housing applicant comes in, we look at his or her medical history and any specific reports. We have commissioned some reports as well and have collaborated with the HSE. Also, our staff have received specific training to assess that and we try to tailor the housing as much as possible, gaining an understanding of a person's particular housing requirements or needs, both in terms of the physical structure of the house but also the support needs.

That is where the interaction with the HSE comes in. Having said that, our housing services throughout local authorities are under significant pressure. We try to achieve that, but it is not always possible to get it exactly the way we would like it because of pressure on the resources, time constraints and the need to give it the focus of a person-centred and case-by-case analysis. We do our best. I do not claim we are perfect but we are doing our best.

As regards targets, the honest answer is that we still have some way to go. There is progress being made but we have a way to go to deliver the right amount of housing in the right places that is tailored to people’s needs. That will be looked at in detail under the new housing plan and the new targets for social housing to 2030.

Mr. Gerard O'Sullivan:

On assessing the need, the mapping part is important. One thing we have discussed at our housing and disability steering group is whether everyone identified by the HSE as needing care is on the local authority housing list. Have those individuals with a need who are on the list engaged with their service provider? Have they had those conversations with the HSE and are on its radar so they can start the process of getting the care package they need in place?

On the targets, within the local authorities our allocations are generally above 20% to people with disabilities. However, there is a challenge to provide allocations and the care package to people with intellectual disabilities. An individual will sit on the local authority list if they do not have that care package in place. That seems to impact people with intellectual disabilities more than people with other challenges.

Maria Byrne (Fine Gael)
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The witnesses are talking about that support mechanism and how the person with a disability possibly needs a personal assistant or whatever. There is a discrepancy in terms of shortages of those. Am I correct to take that from what Mr. O Sullivan has said?

Mr. Gerard O'Sullivan:

To sum up, we can build the houses and get the funding to do that but to create a home, people need to be supported to live within that home. The HSE will have to provide that wraparound package and sanction the funding for it.

Maria Byrne (Fine Gael)
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That was going to be one of my next questions and leads me to the wider group with regard to that whole support package. My understanding is that there are discrepancies across the country. What works in one county may not work in another. Will the witnesses comment on that? As the representatives from local authorities have said, it is about that wraparound package. Sometimes, that leads to accommodation being vacant for a while. Would anybody like to comment on that?

Ms Shelly Gaynor:

When people are offered housing off the social housing list we call it a chicken and egg scenario. They might get the property, but they do not have the support package to take up that offer. That is why we are calling for a national PA programme. It is so that it will be a national standard. Whether you live in Dublin or Donegal, once you get PA funding it does not matter. At the moment, as my colleague said, a lot of housing is lying vacant, and it is not because disabled people do not want to move in. Even in terms of care, we prefer the word "support". Care to me, as a disabled person, implies that I do not know how to live. All I need is someone to be my arms and legs. That is why we call it a support package. I have lived independently for the past 16 years as do many members of ILMI. However, without my PA I would not be here this morning. You cannot take up the housing offer if you do not have the support. That is why we need a national support service, whether that be PA or something else. There is no standardisation of a PA service, so someone in Dublin might get their package quicker than somebody in Donegal. That is where the inequality lies.

Ms Derval McDonagh:

As other colleagues have said, it is also about how two parallel system are in operation and they need to come together and work effectively. As our colleagues in ILMI and the council have pointed out, housing is one really important part. It needs to be accessible, based in local communities and connected to families and resources and so on. The support package to live in the house needs to come on stream at the same time for it be effective. Some people might need a small amount of support to live independently. That might be a certain number of hours of personal assistance. Others might need wraparound, round the clock supports, but the principles should be the same - choice, autonomy, local and community. Unfortunately, those systems are not working in that way. There might be multi-annual funding for housing but multi-annual funding is not available for the support packages to live in the house. We were heartened to see for the first time in budget 2026 the announcement of a certain number of planned house supported living packages made available. However, it was a drop in the ocean compared with what is needed over time. That needs to be significantly ramped up and it needs to be done in a planned UNCRPD-focused way.

Micheál Carrigy (Longford-Westmeath, Fine Gael)
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I welcome all the witnesses. I am touched by a couple of comments. I think it was Mr. Murphy who said that homes are not about bricks and mortar but are more than that. The word co-create is important in anything we do in the area of disability. It has to be done in conjunction with the DPOs and people with lived experience. That is essential. I believe we are heading in the right direction with the human rights strategy. I look forward to seeing it implemented in coming years. A lot of work is going on. It will happen and there is a commitment from Government to implement it, to implement the autism innovation strategy and to put them on a legislative footing.

The Minister of State, Deputy Higgins, has got into her brief quickly and I know she wants to deliver across all areas of disability. However, key to that is making sure we have accommodation. Have we enough now? No. Are we planning at the moment? I do not think we are. An issue came up recently in one area. I am Chair of the joint housing committee, which has looked at this area and will look at it again in a number of weeks. A number of organisations were here last week. We caught it on to Mr. Taaffe from the CCMA again. We need to plan at local authority level to deliver more housing for those with disabilities. Of the social housing that has been built over the past number of years, or per year, what percentage is built with proper universal design so they can be adapted for persons with disabilities?

Mr. Eddie Taaffe:

I do not have that number to hand because there are different ways to measure universal design, whether it is adaptable in the future or whether it is designed to a different layout. It is one of the gaps in our information that we do not have that. It is something we will be collecting from now on to define and measure that. There are examples of local authorities doing portions of schemes or specific schemes that are universal design and tailored to meet a particular housing applicant or occupant. That is ongoing work, but it is one of the gaps in our information. I suspect it is in the order of between 10% and 15%, give or take, but it depends on how you measure it. We now have the standard house types issued by the Department. There are specific layouts in that and we will get specific targets in our social housing programmes under the new programme. That is something we are in discussion with the Department about at the moment. It is probably a gap in the overall numbers. Local authorities have the individual figures themselves.

One of the issues is that we are measuring it slightly differently as well in what we are including and not including. It is something we will address and look at. Under the new housing delivery action plans, there is a very strong desire by the Department and the Minister that this gets measured and delivered.

Micheál Carrigy (Longford-Westmeath, Fine Gael)
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That is good to hear because in my role as Cathaoirleach of the housing committee, it is something I will be monitoring, along with the rest of the committee. Over the next 12 to 18 months, it is our intention to meet with the various individual local authorities. We will be asking what is being delivered and what plans and numbers they have. I have a couple of other questions. At local level, is there interaction with the HSE? Is there a yearly or regular discussion with each local authority and HSE officials where care plans are needed? Does that conversation happen on a regular basis?

This question might be for Ms McDonagh or some of the other witnesses such as Ms Condon or Mr. Walsh. On the cost of disability, this is a piece of work we did in the joint committee on autism. There are different figures out there about what the cost is but the reality is there is a substantial extra cost for a person with a disability. One figure mentioned was €16,000 per year but that varies. Yet, if a person with a disability applies for a social house, the same income levels are there as to whether the person is eligible. If that person was working, they might not be eligible to go on the social housing list despite having a significant extra cost because they are a person with a disability.

I might ask Ms Gaynor or any of the witnesses to come in on it. I firmly believe there should be an income disregard - whatever that figure may be - for any person with a disability when it comes to applying for a social house because that extra cost is there that I would not have if I was applying. I know friends of mine who cannot access the social housing list because of that. I do not think that is fair. I think Ms Condon referenced the AsIAm Same Chance report, which is about giving everybody the same opportunity in life. We are not giving a person with a disability the same chance or the opportunity of getting on the housing list because they have a disability and they have those extra costs and expenses. It is something in the committee that I intend to pursue and push. There has to be a substantial disregard for a person with a disability when it comes to their assessment.

Ms Aisling Smith:

When we talk about the cost of disability, ILMI as an organisation would always acknowledge the structural barriers that are involved in the cost of disability. What I mean by structural barriers is that the social model acknowledges that people are disabled by society and structural barriers. It is all well and good to give someone a house or offer them a house but if that house is in the middle of nowhere and there is no accessible public transport or things like that, that adds to the cost as well. It is important to acknowledge that, with the definition of disability, the ILMI believes it is about the structural barriers disabled people face. That is one of the reasons and one of the things that adds to the cost of disability.

Ms Shelly Gaynor:

I think Ms Smith is spot on there. The house is one thing but we do not want to create a mini-institution just because the house is there. If you do not have the supports to live a life of your own choosing, it does not matter how accessible the house looks. It does not matter about the gadgets. I have an awful lot of technology in my house that allows me to live independently but as Ms Smith rightly pointed out, if a person living with a disability is not in the right environment in every sense within the community and does not have local amenities beside them, it will factor into how they will live. That could be because of the rental situation. I have been living in social housing for 16 years. I feel very proud that I pay my rent like everybody else. Yes, my costs might be a bit higher because I constantly have the heat on. I am able to pay it but my house is like a sauna, regardless of what time of the year it is. As Ms Smith has rightly pointed out, there is much more to living in one's own home than just the actual environment.

We are talking about housing and it is great that we are getting the stats and figures. Just to be aware, as a peer mentor, I often talk to people who have had a disability from birth but not every disabled person is linked in with the HSE. That is something we need to be aware of. Not every disabled person will have a service provider. I spoke with a young woman last week. She was 42 and had never dealt with a provider. It is very important when it comes to housing that the local authority are not constantly under the illusion that the disabled person is in regular contact with the HSE because many of us are not. I just wanted to make that point.

Ms Aisling Smith:

ILMI and ourselves firstly would always support choice, freedom, equality and control. In that context, I have another example of a lady who I was talking to. It might be going a bit away from the question but I have experience of talking to a lady who was offered a one-bedroom house. Of course, she was grateful for that one-bedroom house but she had to fight and say "No, I might have people, such as family or friends, to stay over." It is not the fact that she was offered or it was presumed she would only want a one-bedroom house, it is the underlying assumption that she would never have anyone stay. If you were talking to a non-disabled person, that presumption would never be made. It is not that it was said outright but it is the underlying tone of why she was offered a one-bedroom house.

Laura Harmon (Labour)
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I thank all of our witnesses for the presentation and discussion this morning. It is clear there is a load of work to be done on housing in general. With housing for disabled people, I feel they are being doubly discriminated against on top of that, between housing and access to services. Last week, we had quite a lengthy discussion about independent living, as the witnesses are probably aware. One thing that struck me about that discussion was the disparity between regions in terms of what a person can access in terms of services, such as personal assistance, PA, services, between Dublin and the south west. There was a huge disparity in that regard. I would be interested to hear a view on that.

Have the witnesses noticed any increase in evictions? Has that affected disabled people? I know there has been an increase in evictions in general over the past year. Is that having an impact as well? In terms of congregated and inappropriate settings, we have to be very careful in general about how we talk as a society about disability and we have to ensure we do not use paternalistic language. It is all about trying to ensure the person can live independently and make their own independent choices in every case, insofar as possible. I understand there is a high proportion of disabled people living in inappropriate settings like nursing homes as well. Does anyone want to comment on that? Has there been increase in that in the last number of years?

From a local authority perspective - I know I am asking a load of questions here - last week at the committee, people described accessing services as a black hole because they felt they were going from pillar to post, be it the HSE or their local authority. They wanted to have more of a one-stop hub to access services. Is that something the witnesses would support? In terms of local level, what would that look like in terms of staffing? What would be needed from the State to ensure the services could be provided, such as housing in particular?

What needs to happen there? Do we need a real injection of funding and resources across the board at a local level? I know my questions were very open, so I would invite any of the witnesses to come in.

Ms Joanne Condon:

We are a nationally based organisation and have advocates in every county in Ireland. Therefore, we see first-hand the disparity in what the Senator has described. Access to services is very different across the country. When our advocates come together to discuss this, they are horrified at the differences between one part of the country and another. There is a geographical lottery for disabled people, depending on what area of the country they are in.

With regard to congregated settings and paternalistic language on choice and independence, I will go back to a previous question that was asked. We heard Ms McDonagh welcoming some of the increases in the budget for various services, which we all welcome. However, one of the big issues that was not addressed in the budget was the cost of disability payment, as well as the weaker response on daily living costs and the removal of previous once-off supports. Issues like that highlight that the provision of housing is not enough. With the issues around day-to-day life costs, there are also the spin-off issues of poverty and isolation. For example, as Ms Gaynor described, there might be rural housing without adequate transport, which ultimately leads to limited choice and autonomy.

If we go back to the premise of the UNCRPD and the era of rights that we hope we are moving towards, all of these things are massive barriers and impediments to people realising their rights in reality. There are great ambitions in many of the documents and strategies that we have mentioned today. We welcome those, and they are rights-based, as they should be, but, as Mr. Murphy said, until we see them materialise, they do not really mean anything. As an advocacy service, we see the whole plethora of issues, many of which we have tried to cover today. Without adequate advocacy support, we imagine that many of the people we meet and try to help navigate through these complex systems would be far worse off.

Ms Shelly Gaynor:

We in the ILMI have not seen many evictions. One of the things I wanted to touch on was that many disabled people, including me, have a package of PA supports. It was mentioned that a lot of disabled people end up in nursing homes. The thing that I have come across a lot, as I am sure others have, is that when somebody has a package, they are told they are fine and they are living their life. However, if they are unwell or something medical happens, there is a fear that if they go into the hospital environment to be treated, when they are ready for discharge, they may not be able to go home to their original home because their medical needs have changed.

Of the many people my colleagues have been supporting in ILMI, I am aware of a case where the person was living with a service provider, but very much had her own front door key. However, because her medical issues had changed, the provider was not willing to take the rap and said she needed more nursing care, which it was not prepared to provide. I would look for support, but also for more accountability. There are many service providers, some very good and some not so good, but they are getting money in our name. They say they represent disabled people, but if you talk to many of our members, they will say that, on paper, they have a PA service or have X, Y and Z of a service, but in reality, they are not receiving that service. There is a fear among disabled people that if they end up unwell, the service they currently have will be taken away, and that is how they end up in nursing homes.

Ms Derval McDonagh:

I agree wholeheartedly with my colleagues at ILMI and the National Advocacy Service. It is clear there is deep inequality baked into our systems as they currently stand - I think that is fair to say. While we have welcomed the increase in the budget, at Inclusion Ireland, we are always curious about exactly where that budget is going, and whether it is going towards human rights-compliant, community-based supports for people, or just to keep the lights on. There are often announcements about increases in budgets, which are welcomed, but when we do the maths underneath it all, when it comes down to it, the amount of money going towards actual UNCRPD-compliant, rights-based community supports is quite low. That needs to be rebalanced over the coming years. While there was a bit of a start last year, it is clear that it needs to be ramped up.

We had the time to move on from the congregated settings policy, which has been broadly welcomed across the disability organisations. It is beyond time that we moved on from our institutionalised past. What we did not do was replace it with a community living, UNCRPD-aligned policy, with legislation to give it teeth. Until we have that, we are lurching from crisis to crisis. There is no right baked into our legislation. There is no right to independent living in our policy landscape right now. That makes it very difficult to push this further on. We need to see those underpinnings and see a Government focus on this. It is in the programme for Government to review the Disability Act. We need to see that happen, and we need to see the right to independent living enshrined in our legislation. We need to see resourcing, year on year, in a multi-annual, planned way, going towards human rights-based approaches.

At the moment, members of Inclusion Ireland are living at home with elderly carers, as the committee has heard from witnesses in recent weeks. What happens is that we are dealing with this in a crisis management mode. People are taken from their family homes in the worst of circumstances and forced to live counties away with strangers. That is institutionalisation wrapped up in a bow. We are still repeating patterns. We have not moved on. It is time to take that seriously. Those underpinnings of legislation and policy need to be there, co-designed by disabled people.

Ms Aisling Smith:

I would add to what my colleagues in ILMI and Inclusion Ireland have said. We have run a series of Zoom sessions called “Ableism Meets Ageism.” One of the things that has come up in those sessions is the importance of PAs, but also the idea that when people reach 66, the funding for PA services goes from physical and sensory disability to older person's services. With that comes not only a potential reduction in hours, it also moves to the idea that disabled people only ever need assistance with personal care and that their lives are within the home, which, as we know, is not the case for many people over 66. It is about recognising that having a PA service in legislation is about choice, control, equality and freedom.

Mr. Micheál Walsh:

I would make one comment on the nursing homes, which we did not touch on. It is a big cohort of people that we do not want to forget. We have not seen massive numbers move out from nursing homes, and we are certainly seeing some under-65s moving in. The biggest concern for us is that some nursing homes have large groups of under-65s, and they are becoming de facto congregated settings. Admittedly, the HSE has a €10 million fund. Some RHA or CHO areas are much better at utilising that fund, whether to get people out of nursing homes or to improve the quality of life while they have to remain in nursing homes for a short period. It is certainly an ongoing concern.

I will also speak to the disparities. The region I manage runs from Kerry to Wexford, with everything in between, and there are regional disparities. It is not just an urban-rural divide, and even urban areas can be quite different. We can see two very good actors in many cases, with the city and county councils trying to provide the properties and the HSE trying to provide funding for that. However, they are often not linked or joined, and therefore, a house can lie idle for a long time while a disabled person is in quite a difficult situation. It is important to note those points.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Thank you. As agreed, we will suspend for a short period to allow for a break.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Cuirim fáilte roimh na finnéithe. There is an element of this being almost a repeat of the past number of meetings we have had. The numbers will change slightly but the ideas remain the same, whether it is 1,500 people with disabilities, particularly intellectual disabilities or the 2,000 people who are in the care of parents over the age of 70. Some 450 or 500 of those parents are over the age of 80. We all heard the story of the 97-year-old woman who is looking after her son who has Down's syndrome. None of the system works. The witnesses shared that only 10% of those who answered a survey have a housing plan and 90% do not. Before We Die had an even worse figure, which was that only 2% had a plan. Either way, a significant number of people do not have a plan. When I spoke to Mr. Bernard Gloster, his idea was that local authorities would do the heavy lifting and then the supports would be placed around, which is the missing piece . None of that is happening. Some 1,200 people aged under 65 are still in nursing homes. There are emergency circumstances whereby someone ends in an accident and emergency department or dies. The for-profit sector then steps in at almost twice the cost. Somebody could be sent two, three or four counties away and the family set-up is split up and that person could lose his or her connection with disability services.

Ms McDonagh spoke about the fact that she would see an improvement in the sense that there is an acceptance of this and she is starting to hear the right stuff from the HSE. She is not seeing the actions but we are at least trying to put plans in place and to deal with not-for-profit disability services. However, most people have not experienced that. Does she have a notion as to the level of need out there?

Ms Derval McDonagh:

It is pretty well-documented at this stage what we know about the facts and figures. As the Deputy rightly pointed out, thousands of people are living at home with their families and want to move into homes of their own.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Some 250 citizens were dealt with last year and most of those were emergency cases.

Ms Derval McDonagh:

That is absolutely right. This year was the first time we saw announcements from the Government about more planned places for people to move out of the family home and into a home of their own. We broadly welcomed that. Of course, we want to see a process. We want to see how that works in practice. We want to make sure that is human rights focused, etc. I would say the numbers we have are the result of under-reporting. Many people with intellectual disabilities are not yet on the housing list. That is fair to say. It is very confusing-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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The figure we got last week within the same survey was that only 19% were on the housing list. The fact is that an awful lot of parents step up to the mark, over and above, and on that basis the State has been able to lie back, for the want of a better term.

Ms Derval McDonagh:

We at Inclusion Ireland have a job to do to spread the message and help people to understand the importance of getting on the housing list early and starting to have conversations early about what people want for their futures and within their family circumstances. It is important that the message gets out there to get on that housing list and to-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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I agree 100%, but I go back to the lack of a one-stop shop. Some of this stuff should happen seamlessly.

Ms Derval McDonagh:

That is absolutely right. The process and pathway, as Mr. Murphy referred to in the opening statement, is not clear for people. It is important to say that. It is difficult that a person applies to the local authority for a house and then has to go and talk to his or her service provider or the HSE about the package of support. It is very difficult for that person and his or her family to navigate that system. It is incredibly complex to do. People are getting different information from different people, etc. We agree that there needs to be a transparent, accessible pathway to housing and supported living together. The housing and supported living steering groups are supposed to provide an avenue for that. They need to be beefed up and strengthened. They need more teeth. There needs to be multi-annual funding from the HSE to allow support care packages to come on stream at the same time as the housing. There is a lot of groundwork and foundational work that is not there yet that needs to happen.

A lot of the strategies speak to that groundwork and we really need to be-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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We need to see action and resourcing. We saw the issues that Anne had and the huge inroads that were made. Unfortunately we have all seen inconsistencies across local authorities. I will go back to that. The councils are meant to be a major part of this pathway. In fairness, I have seen the local authority in Louth and I would not like to be dealing with the lists the social workers have in front of them. It is huge and really complex. A lot of it concerns disability, and secondary purchases are under disability. Obviously, there are also regular allocations, but the fact is we need the HSE, the disability services and the local authorities in a proper pathway and with a proper plan. To me that is not exactly happening at the minute. As Ms McDonagh has said, it would need a huge level of resourcing. We all know that every local authority is dealing with the housing crisis, but what would it take to have a fit-for-purpose system where we could do this in a planned way so we could help parents? A lot of them just want to know that there is a plan in place. They do not want it tomorrow but they need to know that it is there for when the circumstances get worse, when they get older or when it is not possible to look after their child.

Mr. Eddie Taaffe:

First, if we look at the numbers for the local authorities, in 2024, we allocated 2,900 dwellings, for want of better term, to people with disabilities. The bulk of those-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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But some of those are just people with disabilities who have a mobility issue for whom the fit-for-purpose measures are put in place. I know this and I am not taking away from that. I have advocated for that and I have seen great work done. We are talking very specifically about where someone needs extra care and resources and the local authorities cannot access it, so to actually put somebody in a house would be a disservice to everybody.

Mr. Eddie Taaffe:

Absolutely, but there are a couple of things. The first is that, under the new housing plan, we need to see an emphasis on accessible houses and homes being delivered. If that takes targets, then that takes targets. That is the piece that local authorities can do. I am a firm believer in controlling what we can control. I would be confident that we can continue to do that and ramp that up. The funding is in place with the social housing programme. Our schemes have a significant level of social housing delivery. It is about tailoring a portion of that, a more than adequate proportion, to meet the needs of people with different types of disability on our housing lists. The piece that we need to beef up, which was referenced earlier, is that integration with the HSE, and as early as possible, to say here is-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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It should be running the show. The HSE should be talking to the local authorities and saying what it needs and what it, alongside disability providers, is providing to the authorities.

Mr. Eddie Taaffe:

Yes, absolutely. The housing and disability steering groups are the first step on that. Some are probably getting there and getting to that model. Others maybe have a bit of work to do depending on the resources in the local authority and in the HSE locally to do that. There does need to be a bit of best practice work brought to bear on that.

Ruairí Ó Murchú (Louth, Sinn Fein)
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We will be taking the HSE back in.

Martin Daly (Roscommon-Galway, Fianna Fail)
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I apologise for being late. I am on the health committee as well. I have read the statements. I welcome all of the witnesses. I want to talk to Independent Living Movement Ireland about personal assistance services and the most desirable model of personal assistance. I do not know if there is a cultural problem in this country in that we have a problem with funding personal assistance when we would be happy to have someone in an institution. Will the witnesses speak to that, please?

Ms Aisling Smith:

We need to define what a personal assistant is. A personal assistant is not a carer. A personal assistant is about choice, freedom and control. Within that it is about giving control to the disabled person. When we think about carers, we think of the many wonderful family members who care for and help disabled people. But when we think about care, with think of the idea of a personal assistant, first of all, not as a carer. When you are trying to get funding for these, you must go through individual assessment of needs and all those sorts of forms and tests where personal care is prioritised as the only thing that needs to be looked at. However, this is like saying to a disabled person they cannot live outside the home and the only existence that they have is the assistance they might need at home. As an organisation and as disabled persons ourselves representing Independent Living Movement Ireland here today, the reality is a PA service is used for a whole lot more than personal care. Yes, personal assistants are used for personal care and to help with household chores, as with anything else, but they are also used to help people with note-taking at college, with education, with transport and with travel if people want it. It is to give people that choice. As we said in our opening statement, we need to clearly define what we see personal assistants as. We need to move away from the medical model idea of disabled people needing curing or fixing or things like that. We need to recognise that it is a rights-based issue and that those rights exist not just in the home but outside the home also.

I go back to my previous comment about being over 66. It is stereotypical to say that life after 66 no longer exists. There are many active members in our society who are disabled people. They do not stop being disabled just because they turned 65 or 66. It is important to acknowledge this and not legislate for PAs just within the age range of 18 to 65. It must be recognised there are many people over the age of 66 who lead full and active lives. Where the funding from 18 to 65 goes under the realm of physical and sensory disability, when a person reaches 66, at times it can go to the older person services, which restricts people to in-home work because they generally only care for things like personal care and what people deem as essential.

When we are talking about personal assistance, it should not come down to us only having the funding for this or that. Of course there is only a certain amount of funding but when the State is providing that funding, it cannot provide funding for something it does not understand. We need to understand what a personal assistant is and what they provide for disabled people. It is to live the life that we choose.

Ms Shelly Gaynor:

To back up Aisling's point, for me as someone who is using the PA service for 28 years, I can say that a PA is so much more than somebody who gets me out of bed. Why, in 2026, do we always talk about disabled people only needing care. Anyone who knows me will tell you that I hate the word "care". The only time I want to be cared for is when I am in a medical emergency. If I am in my home or in my community, I am typically in work. Without my PA today, I would not have been able to get up and I would not have been able to have a shower, but most of all I would not have been able to leave my home. That is the big difference. I always say to people when I mention it to them as their mentor that a PA allows the person to go outside the home. Many times the traditional carer will only be allowed to care - again, I hate that term - for the person and will only be allowed to do that job within the home. As a 46-year-old woman, I do not want to be told by the HSE or by society overall, "Well aren't you great because you got up?" Did anyone give you a slap on the back for getting up? There is more to living a life than just getting out of bed. That is what the PA is for. I always describe them as the extension of my arms and legs. They do everything that I cannot physically do. There is much more to leading any life, particularly for a disabled person, than just getting out of bed. I think there is too much emphasis on we got Johnny out of the bed today and Johnny had his breakfast and was able to have a shower. No other society that I am aware of would congratulate a human being because they got out of bed and had a shower. Yes, we are all going to need care at some point in our lives but we need to move away from the thinking that care is the priority when we are talking about disabled people. It is not necessarily the number one priority.

When I leave here today, I am going to go and meet friends and do what everybody should be able to do, but unfortunately, for many disabled people, if they do not have the right supports and the adequate amount of funding, they cannot do that.

Ms Aisling Smith:

The Deputy mentioned families wanting reassurance about housing.

Martin Daly (Roscommon-Galway, Fianna Fail)
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Individuals.

Ms Aisling Smith:

Disabled people need reassurance about housing.

Martin Daly (Roscommon-Galway, Fianna Fail)
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Yes, point taken.

Ms Aisling Smith:

It is not to discredit the Deputy's point, but disabled people themselves need to know that they will not have to go through loops of forms and bureaucracy to gain equal rights to accommodation.

Ms Joanne Condon:

We have very clearly described the complexity of the system that exists. I challenge anybody to try to draw it out. It is complex. The Deputy described all the nuances around being 66, things changing or the siloed systems between the different elements of where you happen to fall as regards where the funding comes from, but some people cannot self-advocate at all. Some people do not have any natural supports. Some of the people we support cannot communicate verbally; they communicate in many other ways. As such, there are even more barriers.

We have mentioned structural issues, but sometimes even being able to navigate the system is completely out of reach for a whole cohort of people. That becomes starker when you realise that the types of support we offer in our service are also out of reach for people because of waiting lists and our inability to go and find those who might need our help. They are even more at risk of having their rights violated in all the ways we have described and more.

Liam Quaide (Cork East, Social Democrats)
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Apologies for joining the meeting late. I was caught up with other commitments.

For anybody who would like to speak on it, I have a question about policy positions on congregated settings and whether we are sometimes potentially at risk of being too general with that. I completely accept the history here. Many people with intellectual disabilities were institutionalised, segregated, and denied autonomy and the right to participate in their community. That legacy is undeniable and the general trend is progressive. However, is there a danger in assuming in a blanket way what every person with an intellectual disability needs or wants? I ask that because in my constituency in Midleton, I pursued a campaign over several years regarding a 20-bed service for people with severe and enduring mental health difficulties where many residents had lived for years or even decades. It was located in the town centre and was close to shops, cafes, services, amenities, transport and the ordinary life of the community. When its sudden closure was announced, the residents and their families were uniformly devastated. For those residents, it was their long-standing home and it was uniquely connected to the town around it.

As has been discussed here a lot, some smaller residential settings can be physically dispersed and quite socially isolated and, in a way, almost resemble a version of neoliberal alienation rather than community inclusion. For some people, living in the centre of a town like Midleton with multiple other people is far more preferable than living more remotely in a small property without that community access. However, that is not to say it is the case for everybody.

Crucially, of the "progress" that has been made on decongregation, is there any in-depth evaluation of the services people have transitioned to, particularly in terms of community connectedness?

Ms Derval McDonagh:

I thank the Deputy for his question. At Inclusion Ireland, when we speak about housing and supported living, it starts with the person, their wishes, their will and preference, and you build out what a good life looks like from there. Sometimes, we are in danger of repeating patterns if we start with the buildings rather than the people, or we start with the idea that something might be a good model of housing to fit together rather than asking what people are telling us and how they want to live their lives. Far be it from any one organisation or group to ever dictate how people choose to live their lives. There are many different ways that people should and could be able to live their lives with the right supports, but it has got to start with the real will and preference of the person and build from there.

Our history in Ireland of institutionalisation is well documented by HIQA and others, as the Deputy rightly pointed out. The real danger is when we group people together and do not have choice and autonomy for those within that. We see poorer care, poorer outcomes, poorer community connection and all of that. However, I absolutely agree with the Deputy that whatever the support or housing option is, it has got to be built with community-first principles in mind. Setting up isolated housing outside of communities far away from family and natural supports is absolutely not acceptable. Setting up housing where there is not access to transport and all the good things in life that all of us want to include in our day-to-day lives is unacceptable.

As Mr. Murphy pointed out in the opening statement, a house that is far more than bricks and mortar. It is about how we live in that house, how we connect with our community, the relationships we have and the quality of life we have. The narrative has got to start from there rather than us continuously going back to fitting people into buildings. It has got to be about what people's will and preference are and how people want to live their lives. It is about starting with that rights-based approach.

Liam Quaide (Cork East, Social Democrats)
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As regards any analysis of placements or services that people have transitioned into, do we have any sense of the quality of services in a systematic way? If the HSE is saying that we have X amount of people who have moved on from congregated settings and this is a marker of progress, how do we know that is actually a better life for the people, even in a general sense?

Ms Joanne Condon:

One statistic, which is not so much a review but would be relevant, is HIQA's report regarding the contrast between smaller community-based homes versus congregated settings. Repeatedly, its findings are that people's quality of life is poorer, their integration into the community is poorer, and their overall engagement in civil life and sense of serving a meaningful purpose are diminished. That is the one that comes to mind.

Adding to what Ms McDonagh said, I fully agree that our bread and butter as an advocacy service is establishing people's will and preference. We are an entirely personalised service, so that is what informs our work with somebody. To that point, we have supported several under-65s in nursing homes, a small cohort who have decided that they want to stay there. Obviously, we will appreciate and completely respect somebody's personal wish in that regard. However, there is a caution I would bring to applying that broad concept of congregated settings as fine for some people. In our experience, particularly for people with intellectual disabilities who have lived for a long time in institutions, sometimes the first thing they will say is that those institutions are their homes and they want to stay there, but an important thing to point out is that many of them have never experienced an alternative in their lives, so they have no point of reference. They have lived their entire lives in an institution. I say this by way of caution. We have to make sure that we take an individualised approach, as Ms McDonagh said, and understand the full context in which people are stating such things.

Ms Aisling Smith:

On that point, if you have never known or been exposed to anything different, how can you say whether something is good or bad?

As Ms McDonagh said, this is not just a question of choice - we at ILMI support choice - but also of equality. We would never expect an non-disabled person to have to listen when being told somewhere is where they should be. Why is it any different for disabled people? This is a question of equality and we should be living on an equal basis to our non-disabled peers. The first point of that involves choice and an exposure to different settings, as my colleague in the National Advocacy Service said.

Ms Derval McDonagh:

There is no other group of people where it is a uniform thing that they are told they are going to live somewhere and that will be it for the rest of their lives. Most people get to say that they will live with their families for a certain amount of their lives, albeit possibly longer than they would have liked. They might live with friends for a while and then change and live with a loving partner. They might then move out and live with friends again. There is a kind of life trajectory for most people where it is just assumed that change is possible.

For people with intellectual disabilities and other disabled people, we minimise that all the time. We do not allow for change or growth or for life opportunities to open up. That is the inequality again baked in. I feel we are starting at the wrong place if we are starting with fitting people into things. We have got to start with what the person's choices are, real equality, as Ms Smith said, and real autonomy.

Ms Aisling Smith:

It is choice on an equitable basis and being given the same choices as a non-disabled person would be given.

Liam Quaide (Cork East, Social Democrats)
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I fully subscribe to all that. My concern is that what might be presented as progress in a policy document or in an update on service transformation-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the Deputy; he is well over time.

Liam Quaide (Cork East, Social Democrats)
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-----could actually be a major step back for the person who is living in those circumstances.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I am sorry. There is no chance for a response there. We will move on to Deputy Healy.

Séamus Healy (Tipperary South, Independent)
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I thank everyone for attending and for the very helpful and informative presentations.

First, I acknowledge the benefits of the disability grants referenced in the County and City Management Association presentation. That is a very good scheme. It is one that my office deals with literally on a daily basis. It is operated very well by the local authority staff. It was in serious difficulty until the grant levels were increased about 12 months ago. That has certainly helped considerably. It probably needs to be increased further, but that has been a significant help. The other possible area that might be looked at in relation to that scheme is the fact that private houses and local authority houses are dealt with separately. Oftentimes, that means local authority tenants wait much longer for the work to be carried out than somebody in a private dwelling.

The main issue, which was raised here last week and is in some of the submissions again this week, is the whole question of a one-stop shop for housing for people with disabilities. The view has been put forward that this would allow for the planned development of housing on an ongoing basis into the future to allow the co-ordination of both building and the services that people would need. There is a strong feeling - certainly, we got it last week and again this week - that something like that is needed. I accept that there is always tick-tacking and collaboration between local authorities and the HSE. People are looking for something more significant than that, possibly even on a statutory or semi-statutory basis. I am wondering what people would think of that.

In relation to other housing matters, adaptions can take forever sometimes. Some of the difficulty in relation to that is because individual refurbishments for individual houses have to go individually to the Department. I have come across significant delays in relation to that; it was nearly two years in one case. The other issue is the HMD Form 1, which is a sort of one-size-fits-all approach and does not always reflect the situation, particularly for people with chronic disabilities who may have been diagnosed years ago and been discharged to their GP but do not have a second professional medical person to sign that form. That is something that needs to be looked at.

I will ask about personalised budgets. This has been going on now for eight, nine or possibly ten years. Has there been any significant development in relation to that? Are there any individuals with personalised budgets as we speak? If there are, well and good, but how long are we going to wait? Does anyone have any idea how long we are going to wait for these personalised budgets? Obviously, I think everybody accepts that it is the road to go down. Someone might respond to that.

Maurice Quinlivan (Limerick City, Sinn Fein)
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We will take Mr. Taaffe from the CCMA first.

Mr. Eddie Taaffe:

I thank Deputy Healy. I will touch on the first two points he raised. The disabled persons grants is a hugely significant area of work that we do. There were about 2,000 DPGs done in 2024. One of the issues with that scheme as we see it is that we do not have significant in-house resources. What I mean by that is occupational therapists, OTs, and engineers to drive on more of those schemes. We do not get funded for the actual management of the scheme, if you like. We would like to see ring-fenced funding to project manage those because we think we could deliver a lot more and deliver them quicker. Each individual DPG is tailored to meet the needs of the person, so it takes a bit of consideration, time and interaction with the people and families involved. One of our asks, therefore, is that there would be additional project management funding put in, and we could really accelerate that programme and do more with it.

On the Deputy's suggestion about the one-stop shop or, certainly, better co-ordination between local authorities and the HSE, the local authorities are absolutely up for that. One of the things we have done, for example, in County Wexford, and it is only an example, is co-locate HSE staff into the county council housing section. It was primarily done for people with additional needs, particularly around the area of homelessness. That co-location works because it does not require any fundamental change to anybody's way of working or structures, procedures or legislation. What it means is that council staff and HSE staff are sitting in the same room together and they can literally talk to each other across a desk and solve problems. That is one way of looking at it that can be done. The CCMA is definitely up for better co-ordination and better interaction with more teeth to join up those services and really put the firepower we have together to fill in those gaps and delays we have. We are up for anything on that.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Mr. Taaffe very much. Does Ms Gaynor want to come in on that?

Ms Shelly Gaynor:

I will come in on the personalised budgets. I have a personalised budget. I have had for a number of years, but it is not through the one the HSE set up. Our understanding within ILMI is that it has not really met its target. There were meant to be 88 people on it and only 20-odd people have gone through it. We are calling on the committee to try to find out what is going on with that. Our understanding is that there is a delay in it because of personnel within the HSE. Personalised budgets can really work. The scheme I am under means that the person has to set up a company limited guarantee, CLG. That is why we are really looking forward to finding out how the pilot scheme of the direct payment went. The thing about the direct payment is that there is an awful lot of paperwork for the disabled person. Anyone who has a business will tell the Deputy that it is a lot of hard work. That is one of the reasons why an awful lot of our members are very against it or people are very scared of it, should I say, and they choose to stay with the service providers.

I have a team of PAs and I am a legal employer. That is an awful lot of work. That is why we look forward to the finding of the pilot scheme. Unfortunately, however, because of HSE personnel, that has not really been delivered to the level we want. We have a number of people who applied to go on the pilot scheme and they never heard back. I do think personalised budgets can work. I and many others who were getting 18 hours have proven that it does work. There is an awful lot of work to it. I do not think anyone should have to set up a CLG to run their life. That is why an awful lot of disabled people and, indeed, their families kind of think, "Oh God, no." I personally believe, and we do within ILMI, that if the budget is given to the disabled person, they will know best but because of legislation and all the work that goes with running a company, many of the people I hear from and have spoken to are very scared of it. In actual fact, it is financially better because I am now getting more hours out of my personalised budget than I would have been had I been with a service provider. Economically, it is better.

It is because of the amount of work that is involved. The hope with the pilot scheme was that it would make things easier for the disabled person. They would not necessarily have to set up a CLG. As someone who has a CLG, I can say that it is hard work, but at the same time, it is the way to go forward. Financially, we get more buck for our money, and instead of getting five hours, we might get ten hours.

That goes back to my earlier point. I want the committee to look for the accountability of the service providers that are getting money in our name but not really providing the service that many people here believe we are getting.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Thank you. We do not have time for other contributions on that question. We have to move on. There are two members who want to speak, and we have limited time.

Gillian Toole (Meath East, Independent)
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I thank the witnesses for meeting with us this morning. I have to single out Shelly Gaynor, Aisling Smith and Tomás Murphy, as well as everybody else that we have met. Fundamentally, it is their experience that has to inform what suggestions we put forward. Regarding the personalised budgets, Ms Gaynor was on the button. The NDA is finalising its report, and many of us are very keen to know how that progresses. Does Ms Smith or Mr. Murphy have a personalised budget?

Mr. Tomás Murphy:

No, I do not have a personalised budget but I am on the housing list with my local council. You go to the local council and get all the paperwork, but it is not easy to read and you have to sign everything. There is something online every so often, which I think is CBL, or choice-based letting. You see the picture of the outside of the house, but you do not see what it is like inside. Every few years, they send out a form to ask if you would still like to be on the housing list. It is very complicated. You have to sign that again, and everything has to be done again.

The system is not accessible and is not great for people with disabilities. It needs to change. The information needs to be easy to read, with good support to help people sign the forms or look for things online. The system needs to change.

Gillian Toole (Meath East, Independent)
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Does Ms Smith have a personal assistant?

Ms Aisling Smith:

I have a personal assistant through a service provider, unlike Shelly. I do not have a personalised budget. A point to make is that when I was looking into getting a personalised budget, and I am sure this is reflective of the experience of many other members, there is usually a go-between company that would help you to set up your own company. However, while I have hours, I do not have significant hours, and to make it financially feasible, I would need to have significant hours.

Again, I come back to the point that choice and preference should not come down to funding. It should be about what the person wants and needs. It is about choice, control and freedom. I realise the country is not rolling in money, but it should not come down to funding to give someone the choice, autonomy and freedom they are entitled to, as any other non-disabled person would be entitled to and can take for granted.

Gillian Toole (Meath East, Independent)
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Absolutely. Ms Gaynor made a valid point about trying to navigate the personalised budget piece. A recommendation has been made to have an overarching administration support system that would navigate this. First off, we have to try to get the personalised budget away from being a pilot to being the mainstream. Ultimately, that is where the will and preference of people with disabilities will sit.

I will move on. The witnesses are giving very valuable feedback. Mr. Gerard O'Sullivan and Mr. Eddie Taaffe are here from the County and City Management Association. The common thread that we have had over these two sessions is the difficulty in navigating the system. Mr. Murphy made the point about the application form. Another bit of feedback from people is the need to have a report from two different doctors who cannot be within the same practice. However, two medical professionals within the same practice will approach it from a different angle. It is something that needs to be looked at. There is a difficulty for somebody to have to trot off, or wheel off, and get a consultant, particularly given the difficulties, the wait times and the pressure that general practice is under, never mind tertiary care through the hospital system.

Regarding the one-stop shop, we heard about this today and also last week. In their role as representatives of the CCMA, how do the witnesses see a one-stop shop rolling out from today? Will they take the recommendation on board? Is it something that is being worked on? Can they give us a timeline? There are differences from local authority to local authority. Is there any standardisation going on in the background? Can the witnesses tell us what is happening? They are at the coalface, and they are hearing about it here now. I am a fiercely impatient person. I can only imagine what people who have waited years for services and supports are thinking. How do we move things along? If the CCMA is doing that, I want to give the representatives the time to respond.

Mr. Gerard O'Sullivan:

The first thing to say is that we have housing and disability steering groups in each local authority. They are legislative committees that have a remit to work collaboratively with all stakeholders, including the HSE and people with lived experience. That is in place. However, for that to work as a one-stop shop, we would have to enhance their remit and power. As someone mentioned earlier, we would need to give that the teeth and the power to make decisions. That could be looked at. If that was done, given it is in place and set up, we could move it along quicker than setting up something completely new.

Gillian Toole (Meath East, Independent)
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Does the CCMA co-ordinate that or is it done by each local authority? I hate the word “silo”, but is there co-ordination of the data, and then linking it in with the HSE? You cannot manage what you cannot measure.

Mr. Gerard O'Sullivan:

Each local authority manages it. That is a good recommendation that could be done with some oversight through the CCMA in order to make it happen and give it the impact that we need it to have.

Gillian Toole (Meath East, Independent)
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It can be done.

Mr. Gerard O'Sullivan:

Yes.

Mr. Eddie Taaffe:

It can be done. In a nutshell, we are open to anything that makes services, whether HSE services, local authority services or joint services, easier to navigate. Local authorities operate under strict regulations, guidelines and policy documents from our parent Department, the Department of housing. We want to do that, but at the end of the day, we would need the Department of housing and the HSE at a national level to buy into that, and to listen to everybody's input, not just the CCMA and local authority staff, but all the advocacy groups and service users. That would feed into how we can make our services better. It requires buy-in at a national level from the Department of housing and the HSE. It cannot just be bottom-up. We need to operate on a legislative basis. If we look at the housing application process, that is heavily governed by national legislation, regulations and the policies and procedures of the Department of housing.

As for the accessibility and usability of the forms, that is something we are always trying to look at. We would always stress to people that our staff are available to sit down with people, go through the form with them and help them to fill in the form. We appreciate that the amount of data that is required can be daunting at times, but we are there to help people. Applicants can make an appointment. We have clinics to help people. They can come in, and we go through it with them and help them to get it right.

Margaret Murphy O'Mahony (Fianna Fail)
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I welcome the witnesses. I apologise that I was late. It is just one of those mornings, and I had 101 things on. I apologise if these topics have been covered. If so, the witnesses can tell me, and I can ask my colleagues what was said.

I will start with the NAS. I think everyone has a big issue with young disabled people being put into nursing homes. Are there figures as to how many are involved? Do the witnesses have suggestions for immediate policy changes that could address that? It is dreadfully sad to see someone, just because they have a disability, put into a home that is meant for older people.

Ms Joanne Condon:

In my opening statement, I mentioned there are currently approximately 1,200 people under 65 living in nursing homes. That figure obviously changes every day. Some of the money that has been made available is moving people, although that is happening slowly and not fast enough. The issue my colleague, Mr. Walsh, has already mentioned is that people are being admitted as others are being discharged.

In terms of an immediate change, I would love to see the immediate cessation of the placement in nursing homes of people who do not want to be there, whose needs will be inadequately met there, who will not be happy there, and who cannot have the choice and autonomy there that we have spoken about as being essential for equality for citizens and for them to live their lives as everybody should have the right to . Nursing homes are not suitable places for the majority of under-65s to live.

We have encountered many people who are under 65 and living in nursing homes. Last year, we supported 108 such people through our advocacy service, although that figure is a drop in the ocean compared to the number of people who probably need advocacy support. They describe various situations to us. I vividly remember a call to our service that I personally took. It was from a man in his 20s who happened to hear something on the radio about the Ombudsman's Wasted Lives report and realised there was an advocacy service that could help. He described his situation, saying that he was in his 20s and living in a nursing home surrounded by people in their 80s and 90s who were dying around him. He said he wanted to do normal things like learning to drive, going to the pub, meeting his friends and going on holidays. He said he had been living in that nursing home for two years and could not get out.

That story is repeated time and again all over the country. It comes down to a lack of suitable supported accommodation in the community where people can go to receive the type of support they need to be rehabilitated. The conditions of many of the people we meet can actually be improved with appropriate supports. I refer particularly to people with acquired brain injuries. However, they are very often left to effectively wither away in a nursing home without the supports they need to rebuild their lives and reintegrate into work and the life they would like to live. The HSE has certainly begun huge work. We welcome the additional €10 million provided in this year's budget to move people out of nursing homes. However, as long as we continue to admit people, the problem is just going to continue.

Margaret Murphy O'Mahony (Fianna Fail)
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I came in when Ms Gaynor was speaking about care. I know an awful lot is made of people getting up and having a shower but that is so basic. Ms Gaynor was right to talk about going off to meet her friends, as she should if she wants to. With regard to the personalised budget model, which is obviously excellent, looking at international practice, what should be avoided if we are to introduce such a model across the board?

Ms Shelly Gaynor:

It is very straightforward in my head. It is about always talking to the person. We have been talking about service providers all afternoon. For many people who are living with a disability or disabled people, that is key, but I deal with a huge cohort of people within ILMI who have never dealt with a service provider. They do not go to day centres and do not even have an occupational therapist. Many disabled people are attached to service providers but it must be remembered that many people who have been disabled from birth or who have an acquired disability have no knowledge of any service provider. I often get phone calls. My job is to mentor people. It might be the first time the disabled person on the phone has ever even heard of ILMI. I always ask them who their local TD is and whether they have anybody who can support them locally but they tell me they do not know anyone and that I am the first person they have talked to who is also disabled. I am often their first point of contact. NAS will probably hear from people who are in crisis. Ms McDonagh will probably hear from family members who are literally in crisis. When I get a phone call, it reminds me that there are other people like me who want to live their lives. That is why I always say that, to me, it is very straightforward.

We all know it comes down to money. Whether you have a disability or not, everything in life always comes down to money. However, as Ms McDonagh mentioned earlier, you must put the person at the centre because they are the expert. I can sit here and talk on behalf of ILMI about what our members tell us every day, every week and every month, but the only person who really knows is the person you are dealing with. It is about having conversations with the disabled person and letting them tell you. I can tell the Senator what is happening overall but I cannot tell her about people's individual situations.

Ms Smith and I both have a personal assistance service. We run them very differently but we both need similar supports. However, equally, we are all individuals so what she does with her package is very different from what I do with mine. I am a great fan of personalised budgets because the person with the disability is in control. I set my wages and the times my PAs come in and go home. That is basically what time I get up in the morning. There are many people around the country who are told they have to get up ridiculously early to accommodate the carer. In many cases, the HSE tells them that this is independent living. I know many people who live a short distance away from me who do not have a genuine PA service. When I say "genuine", I mean that many service providers claim to offer a PA service but, when you talk to the individual disabled person, you find out that what they are getting on paper and what they are getting in reality are very different.

Margaret Murphy O'Mahony (Fianna Fail)
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We are going back to the shower and so on.

Ms Shelly Gaynor:

Exactly. I have friends down the road who allegedly have a PA service but who are told they have to get up at 7.30 a.m. because the carer, the so-called PA, has to be gone by 8 a.m. That is not choice, freedom or control. We are now in 2026. We should not just be saying that it is great that a certain number of people got out of bed today. As Ms McDonagh mentioned, no other cohort in the country is told they are great because they got out of bed today. Many times, when I was with a service provider, if I spoke up and said I was not happy, I was told that is independent living.

Maurice Quinlivan (Limerick City, Sinn Fein)
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We have to finish up the meeting so we will have to talk to the other witnesses.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I talk over the Cathaoirleach and just keep going.

Maurice Quinlivan (Limerick City, Sinn Fein)
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We are well over time. I will bring in Ms Condon and Ms McDonagh for a few seconds each.

Ms Joanne Condon:

I have a super quick point. I just want to address the international piece the Senator asked about with regard to personalised budgets. We have connections with advocacy services in Australia, which has a national disability insurance scheme. I have had lengthy discussions with those services about how that has played out. A very comprehensive review of that NDIS in Australia has been undertaken and we can learn from that in an Irish context. It will be very interesting to see what that report says but we should be looking to our international counterparts to see what they have learned from the roll-out of schemes that have been in place for a number of years.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank everybody. We have run over time. I am sorry about that. I propose that we publish the opening statements on the committee's website. Is that agreed? Agreed. I thank all the witnesses for attending today and for providing the various materials in advance, which have assisted the committee in its deliberations. The insight and expertise provided are critical to us in our consultations with those who have first-hand knowledge and in shaping our understanding of the policy course we should take with regard to living arrangements for people with disabilities. I apologise that the meeting has to end. We have to be out of here by 12 noon. We have gone well over. As everyone can see, the guys have come in. I am in big trouble. We will now adjourn the meeting until 9.30 a.m. on Wednesday, 6 May.