Liam Quaide (Cork East, Social Democrats)
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I move:

That Dáil Éireann:

agrees that: — every adult with an intellectual disability has the right to live as independently as possible in their own community, with the supports they need to live with dignity, autonomy and security;

— Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) recognises the equal right of disabled people to live in the community, with choices equal to others;

— each adult with an intellectual disability is a unique individual, with their own preferences, relationships, aspirations, needs and levels of support;

— a home is not simply a bed, a placement or a service vacancy, but a place where a person has belonging, continuity, relationships, choice, privacy, autonomy and support;

— planning for supported living and residential supports must begin before crisis arises, not only when an ageing parent or family carer can no longer continue providing care;

— supports should be organised around the person's will and preferences, with the involvement of family members or chosen supporters where the person wishes, and with access to supported decision-making and independent advocacy where required;

— family relationships, community connections and proximity to home should be supported wherever possible; and

— people should have meaningful choice over where, how, and with whom they live, and should not be forced into a single model of accommodation or support; notes that: — too many adults with an intellectual disability, and their families, are forced through a bureaucratic maze involving service providers, the Health Service Executive (HSE), local authorities and other public bodies;

— many families are left without a single public body taking clear responsibility for planning the person's future living arrangement;

— this failure to plan means that the State too often intervenes only when a family reaches breaking point, a parent dies or becomes unwell, or an emergency placement becomes unavoidable;

— the true level of unmet residential and supported living need for adults with an intellectual disability is not known, as the HSE has stated that there is no centrally maintained waiting list for residential services, and the HSE's Disability Support Application Management Tool records applications for additional funded supports, but is not a chronological waiting list and does not represent a statutory entitlement to services;

— available figures are, therefore, only a partial picture of need, and understate the scale of the crisis, as many disabled people and their families do not know that they are required to be on a local authority social housing list to be recorded within housing need;

— at the end of quarter 2 2025, HSE data recorded 1,389 applicants for new residential services, up from 776 in 2019, but the HSE has stated that this was a "point in time" analysis and may not include applications received but not yet processed;

— the Department of Health's Disability Capacity Review to 2032, published in 2021, projected a need for at least 1,900 additional residential places by 2032 under a minimum projection, and up to 3,900 additional places to restore provision to pre-2008 levels;

— the Before We Die campaign has highlighted the fear and uncertainty faced by ageing parents, who do not know where their adult son or daughter will live when they can no longer provide care;

— in evidence to the Houses of the Oireachtas, Before We Die stated that, of 1,000 families surveyed, only 2 per cent had a formal written housing plan for their adult son or daughter with an intellectual disability;

— Before We Die also stated that only 19 per cent of the adults with an intellectual disability in its survey were on the housing list, underlining that official housing and residential data cannot be treated as a reliable measure of true need;

— Before We Die has also stated that more than 2,000 adults with an intellectual disability live with parents aged 70 or older, including 500 whose parents are over 80 years;

— parliamentary question data has shown that at least 606 people with an intellectual disability in disability residential settings were living outside their home county, and at least 193 were living more than 100 kilometres from their family home or community of origin;

— these figures are minimum figures only, because major gaps remain in the State's data on how far people with an intellectual disability are living from home;

— the HSE has stated that information on residents living in residential centres more than 100 kilometres from their community of origin is not collated nationally;

— in HSE Dublin and Midlands, specific data on residential placements more than 100 kilometres from home was not available, with the HSE stating that a proposed information technology change to the National Ability Supports System would be required to provide this data in future;

— in HSE Dublin and Midlands, data was also not readily available on how long people had been living away from their home community, on moves completed closer to home, or on the reasons for out-of-area placements;

— in HSE South West, the reported figure for people living outside their county did not include people from Kerry placed in Cork, or people from Cork placed in Kerry, even where those placements may be more than 100 kilometres from home, because records only captured people placed outside the HSE South West region;

— there is no adequate system for routinely maintaining and publishing national data on the distance from home of adults with an intellectual disability placed in residential or supported living settings;

— emergency and out-of-area placements can become permanent by default, even where a person wishes to live closer to family, community and familiar supports;

— the latest available figures show a growing reliance on private for-profit disability residential provision, rising from approximately 8 per cent of residential places in early 2022, to approximately 16 per cent by the end of 2025;

— in 2025, approximately €526 million of public money was paid to around 220 private for-profit providers for disability residential placements, with approximately €306 million paid to the five largest providers;

— since 2021, there has been a doubling in the proportion of residential placements provided by for-profit companies, without adequate transparency on cost, location, quality, distance from home, human rights outcomes or long-term planning;

— the HSE, Section 38 and Section 39 providers, are expected to deliver complex services, while too often operating within short-term and uncertain funding arrangements; and

— younger adults with an intellectual disability should not be left in nursing homes, or other inappropriate settings, because the State has failed to plan suitable community-based alternatives; further notes that: — Inclusion Ireland, and other disability organisations, have emphasised the importance of Article 19, personal assistance, personalised budgets, person-centred respite and short breaks, therapeutic supports and a continuum of community-based supports;

— disabled people, families and representative organisations have led the struggle for independent living, deinstitutionalisation, and community inclusion over many decades;

— this advocacy helped secure Time to Move on from Congregated Settings, Ireland's ratification of the UNCRPD and its Optional Protocol, and the wider shift towards rights-based community living;

— a rights-based system must plan homes and supports around people, rather than placing people wherever a vacancy happens to arise; and

— public funding for long-term disability homes should build public, voluntary, not-for-profit and community capacity, rather than deepen a market in crisis placements; and calls on the Government to: — publish a five-year national community living strategy for adults with an intellectual disability, prepared jointly by the Department of Children, Disability and Equality, the Department of Housing, Local Government and Heritage, the HSE, local authorities and Approved Housing Bodies (AHBs);

— include in that strategy projected need, regional planning targets and annual targets to reduce waiting lists, emergency placements, out-of-area placements and inappropriate placements, including younger adults living in nursing homes;

— ensure that the strategy includes a robust national assessment of unmet need, including people recorded through HSE disability services, local authorities, AHBs and service providers, and people living at home with ageing parents or family carers who are not yet captured on any formal housing or residential list;

— establish a single statutory community living pathway with one point of referral, one co-ordinated assessment process, one named responsible team, clear decision-making timeframes and access to independent advocacy;

— ensure that every adult assessed as requiring ongoing supported living has an individual community living plan developed with the person and, where the person wishes, with family members or other supporters;

— ensure that individual community living plans address preferred location, choice of living arrangement, support needs, safeguarding, healthcare, transport, day supports, family and community connection, decision-making supports and transition steps;

— provide a clear route for review, where the person, their family member or chosen supporter disagrees with the proposed pathway;

— fund a sufficient range of community-based supports, including supported living, personal assistance, personalised budgets, home support, person-centred respite and short breaks, shared living arrangements, individual tenancies, therapeutic supports and intensive community supports where required;

— expand public and not-for-profit community living services through multi-annual funding arrangements for HSE and Section 38 and Section 39 providers;

— progressively reduce dependence on private for-profit providers for long-term community living services, while ensuring continuity of support, independent advocacy and protection from forced moves for existing residents;

— require written reasons, a rights assessment, a safeguarding plan, and a review timeline for any emergency or out-of-area placement;

— prepare a plan to support a person placed far from home to return or relocate closer to their family and home community, unless this is contrary to the person's will and preference;

— ensure that funding and service development are linked to transparent human rights, safeguarding and quality standards, including standards on choice, inclusion, privacy, advocacy, family and community connection, and restraint reduction;

— routinely maintain and publish national data on the distance from home of adults with an intellectual disability, placed in residential or supported living settings;

— publish an annual report, setting out by region and provider type:

— the number of adults with an intellectual disability awaiting residential, supported living or community living supports;

— the number known to be living with carers aged over 70, and over 80;

— the number living outside their home county;

— the number placed more than 50 kilometres, and more than 100 kilometres from their family home or community of origin;

— the length of time spent living away from home;

— the number of emergency placements;

— the number of placements arising from family crisis, including the death, serious illness or incapacity of a parent or primary carer;

— expenditure by provider type;

— progress in implementing individual community living plans; and

— the number of people with a documented plan to move closer to home, and the number of such moves completed each year; and

— present that annual report for debate to both Houses of the Oireachtas, and respond with actions, timelines and funding requirements arising from its findings.

Worried, anxious, fearful, angry, afraid, powerless, terrified, scared, overwhelmed, abandoned, hopeless. Words like these came up again and again in a survey the Social Democrats conducted in the run-up to this motion. Most of the 513 responses came from families of people with an intellectual disability but we also heard directly from people with an intellectual disability themselves and from advocates. Then there were the written responses that stopped us in our tracks – parents saying in different ways that they hoped to outlive their own adult son or daughter because they had so little confidence the State would support them properly when they were gone. That tells us the depths of this crisis in community and living supports for people with an intellectual disability and the emotional reality for the many families caught up in it.

The Social Democrats are bringing forward this motion because adults with an intellectual disability are being left without a clear plan for where they will live, what supports they will have and what happens when a parent becomes ill, can no longer continue caring, or dies. Thousands of families are living in that kind of purgatory. When crises come, the answer from the HSE is too often whatever placement can be found, even if that means traumatic upheaval from family, community, routines and friends.

Each person with an intellectual disability is a unique individual with their own preferences, wishes, relationships, fears, strengths, vulnerabilities and support needs. The starting point must be the person - where they feel a sense of belonging, their relationships, connections, the pursuits that give their life meaning and the place they can truly call home. The current system could not be more jarringly at odds with that basic right. Too often it asks where is there a bed or vacancy - somewhere, someone can be put. This motion is about bringing humanity, planning and accountability into a system that has drifted for far too long.

The Before We Die campaign deserves enormous credit for taking this crisis out of the shadows and bringing it into public view, for uniting families in common purpose and for turning private anguish into a political force. In particular, I thank Tony Murray, his wife Susan Corrigan, their daughter Aoife, and also Sinéad McGrath, who has led the campaign in Cork and her sons Alex and Lee. Their dynamism, openness and encouragement have inspired many families and helped ensure that this motion is rooted in real lives and real experiences. I also thank Paul Alford, whose experience has helped inform this motion. Paul has an intellectual disability and spent 30 years in an institution before he was finally able to rebuild a life in the community. He now works with Inclusion Ireland. He has spoken about what the institutional life meant for him: very little freedom and other people making decisions for him. Paul is working to make sure nobody else has that experience. He is worried about people living far from their communities with no choice in their lives, and about Ireland ever going back to institutions.

As Tony Murray, chairperson of Before We Die, said at a recent public meeting in Cork, we have replaced the high walls of institutions with distance. For many people with an intellectual disability, moving on from congregated settings has meant a new form of alienation, dislocation from home, being placed in an emergency arrangement and being left there until it effectively becomes long-term exile.

Before We Die has highlighted that more than 2,300 adults with an intellectual disability are living with parents over 70, many with parents over 80 and some with parents over 90. Replies to my parliamentary questions show that at least 606 people with an intellectual disability in residential settings are living outside their home county and at least 193 are living more than 100 km from home. However, these figures are likely to be much higher because large parts of the country were unaccounted for in the HSE's data. A major part of the current crisis is that we do not have a full picture of its scale.

The motion requires a proper assessment of unmet need; one integrated referral pathway with clear lines of responsibility so families are not passed between local authorities, the HSE and other service providers; individual community living plans built around the will and preference of the person; and a five-year national community living strategy with funding, targets, regional planning and public reporting. The motion calls for the provision of multi-annual funding so public and not-for-profit providers can plan and sustain proper supports and a phased reduction in reliance on for-profit residential provision. This is not about writing a blank cheque for service providers on a simplistic notion that non-profits are all good and for-profit companies are all bad. It is about ensuring that Government investment is tied to a strategic plan for services and to human rights standards.

We are approaching this constructively and are ready to engage with the Government on it. I acknowledge the valuable work of Fianna Fáil TD, Deputy Pádraig O'Sullivan, in Cork, linking the Before We Die campaign with both city and county councils. This is a crisis that will require sustained efforts across the Oireachtas. To borrow one of Micheál Martin's favourite phrases: We do not claim to have a monopoly on compassion on this issue but we do have the drive to address it. We approach the crisis with ambition and humility. Ambition, because families have waited far too long for a planned system of community living. Humility, because the dysfunction in the system is so deeply entrenched. Entrenched does not mean inevitable. A crisis that has been years in the making will be fixed only by people who are in it for the long haul and by proper investment. If the Government is serious about this, we are ready to work with it. Families have had enough sympathy; they need a plan. They need to see political urgency in action. If the Government is serious about facing up to the crisis, we will support it. If not, we are ready to take on that responsibility ourselves.

Holly Cairns (Cork South-West, Social Democrats)
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First, I thank Deputy Quaide for his dedication and really hard work on this issue. Our motion today can be boiled down to one simple principle: disabled people have the same rights as everyone else. They have the right to a home, the right to decide where they live, the right to remain part of their community and the right to relationships, privacy, autonomy and dignity. These are not optional services to be delivered when a government feels like it. These are human rights, plain and simple.

Too often we see governments pointing proudly to their budget allocation for disability as though it is some kind of great act of generosity. Disability supports are not charity. They are the basic supports the State is obliged to provide to deliver on the rights and freedoms disabled people are entitled to. Those rights are recognised under Article 19 of the UN Convention on the Rights of Persons with Disabilities, which Ireland ratified years ago but on which it has still failed to deliver. Instead, we have a system that fails disabled people and carers alike; a system where many people are denied the personal assistance hours they need; and they are cut off by an inaccessible public transport system and locked out of employment.

Many young disabled people are living in places they should never have been put in the first place. Over 1,000 adults under the age of 65 are still living in nursing homes. That is five years after the Wasted Lives report told the Government this had to end. Adults with intellectual disabilities are facing another heartbreaking housing crisis because of the State's failure to uphold their human rights. That injustice is what sparked the Before We Die campaign which, in turn, has inspired this motion. One mother put it starkly: "Please let me live just one day longer than him. I am terrified for his future." That is the position the State has forced people into. Rather than planning for independent living, we wait until an ageing parent can no longer cope, until they become seriously ill or until they die. Only then does the State begin looking for somewhere for that person to live. That is not planning; it is negligence.

Only 2% of families surveyed had a formal written housing plan for their adult son or daughter with an intellectual disability and 92% still rely on a parent as their primary carer. Independence means having a choice in your care. For some, that may well be family carer but for many, being looked after by your parents into adulthood does not represent the independence that they want and are entitled to. The Government cannot even tell us how many people are waiting for appropriate housing and supports. How can you solve a crisis that you refuse to even measure? You cannot. Right now, when people's parents become too ill, die or simply can no longer cope, too many people are sent wherever a vacancy happens to exist, often far from their families, friends and communities. That is not a rights-based approach; it is institutional thinking. It is wrong.

This motion calls for what should already exist - one pathway, one assessment, one named team and one community living plan.

Crucially, it calls for planning that begins years before crisis, not days after one.

Disabled people must be at the centre of shaping disability policy. DPOs and advocacy services need sustainable funding so disabled people themselves can shape the decisions that affect their lives. We owe it to every disabled person in this country to finally deliver on the promise of the UNCRPD, to make Ireland's commitment mean something and deliver people's fundamental rights.

Gary Gannon (Dublin Central, Social Democrats)
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Yesterday, I stood in the Chamber and talked about women being turned away from refuge spaces when they were fleeing violence. Today, we are back here again, talking, fighting and asking for something once more that citizens in this country should never have to go without. It is not just a safe home, but a place of sanctuary, a residence for some of the most vulnerable people in this State - adults with intellectual disabilities. That should never be a luxury. It should never be seen as an aspiration. It should just be a basic need that is met. It is an indictment of one of the wealthiest countries in the world that so often Opposition TDs spend so much of our time in this House pleading for the most basic rights of some of the most vulnerable people in our society.

I know many of the families behind the Before We Die campaign. I met Tony Murray, his wife, Susan, and their daughter, Aoife, when I was out canvassing, as everybody in this Chamber has had to do. It was extraordinary when I was knocking on their door asking them for a vote and they were asking what I would to contribute to the fact that their child may not have a place to live after they die. It was a conversation that will stay with me for as long as I remain in politics and afterward. I have watched Tony and Susan spend years carrying burdens that they should never have been forced to carry. They should never have to fight every single day, week or year just to get the State to recognise that their son or daughter deserves security, dignity and a future.

Equally, thousands of families are living with a fear that no parent should ever have to. It is not just the fear of growing old, but a fear of what happens after they are gone. Imagine carrying that every single day, wondering who will care for your child, where they will live, and wondering if they will be uprooted from everything and everyone they know because no one in the State has thought to make a plan. Some parents have said they hope to outlive their own children because they have so little faith that the State will protect them. That is a devastating thing for any parent to have to say, and it should be a devastating thing for any Minister to have to hear.

Our survey confirmed exactly what the Before We Die campaign has been telling us for years. A total of 86% of families told us there is no clear written plan for the future. Families describe themselves as worried, anxious, powerless, afraid and terrified. That is not because the families have not planned. It is because the State has not. Instead of asking what life this person wants to live, we wait until a family reaches breaking point, until a parent dies, until there is a crisis, and then we ask a completely different question - "Where is the nearest vacant bed?". That is not planning. Every person with an intellectual disability is an individual with their own relationships, routines, friendships and communities. Their life cannot be reduced to whenever a vacancy happens to exist. They deserve a place where people will know their name, where family can visit without driving halfway across the country and where their friends are. That is what Article 19 of the UN Convention on the Rights of Persons with Disabilities promises. It is what far too many people in Ireland are still denied.

Our motion asks for something very reasonable: a proper national strategy, real planning, real accountability and homes built around the person, not around whatever space happens to become available. Families cannot continue to carry this burden alone. Disabled people and adults with intellectual disabilities should not have to wait for a crisis before the State decides they deserve somewhere to call home. Every Tuesday evening in the handball alley in Ballybough, families, parents and guardians of adults with intellectual disabilities join each other in company to share stories, to have support networks and a place for their adult children to be present with friends. I have visited and been invited on a couple of occasions. When you stand in the room and hear the stories from people, some of whom who have lost partners themselves, their abiding fear is what happens after they die. It is an extraordinary indictment of our Republic.

This problem is not insurmountable. It requires resourcing, planning and not just listening, which I appreciate that the Minister has done, but immediacy of action. Tony and Susan's determination alongside their fellow campaigners in Before We Die should be an example to all of us, but we should not be back here in a year's time asking where the plan is. It should already be in motion. That is the minimum of what this motion expects of us. I thank Deputy Quaide for bringing this forward and for the diligence he has brought to this issue.

Eoin Hayes (Dublin Bay South, Social Democrats)
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By far the hardest conversations I have with constituents are the ones struggling with disability services for their children. I knock on the door and it opens, sometimes with their dependent adult child with an intellectual disability by their side. You can see the difficulty etched into the faces of those who care so deeply for those vulnerable family relatives and their despair with the State that continues to fail them so badly.

During my first elections, the local elections in 2024, I remember meeting the older sister, Lynn, who takes care of her brother while working full time in the Civil Service. She was deeply frustrated by a State that she works for that lets her brother down every day. When I first knocked on her door, she asked me what the State and I would do for her brother. She was clearly exhausted, clearly at her wit's end of interacting with the State that seemed to care about everything but her family. I told her I would do my best, as I hope I am now.

Months later, during the general election, I knocked on a door an Kieran and his son, Daniel, answered. Kieran told me that it was his wife, Mary, who makes the decisions on who they vote for. No wonder, because she has been fighting for decades for her son for services. Most recently, I fought alongside her for an adult drama programme to be continued for Daniel. Even in basic activities, these parents have to fight for everything.

This week I spoke to Katy and Felim, who care for their adult daughter, Ellie. Katy made an excellent point to me. The State has known about her daughter Ellie for the whole 26 years of her life, but at no point has any service thought to plan for her adulthood or independence. She said to me she had no faith in services at all, or in the quality of care and support Ellie would get, and that they had little understanding of her personal situation, her needs, or her wants or her dreams. Ellie is looking for the simple things in life - home, family, support, community and things to do - yet these simplicities seem too complicated for the State to grapple with. Across all of these stories, the difficulty is mirrored almost exactly from family to family. It should not come to this. For each of them, like the brave campaigners in the Before We Die campaign, they have had to bare their lives and souls to public representatives for their difficulty just to be heard.

A total of 2,314 adult children with intellectual disabilities are cared for by parents over the age of 70. Thousands more are cared for by siblings, parents who are younger or extended families. All have been told, officially, that they have "an indefinite responsibility" to provide housing and care for the disabled person in their family. What a gross abdication of a responsibility by the State that was supposed to help and not to hinder. At the root of this is an exploitation of familial love. There is a cruelness in a system that ignores the needs of our most vulnerable, whether it is as simple as accessing housing or care, or an outsourcing of emergency care to a private sector motivated by profit over human dignity. This is not the way that we should govern. This is not the way our people should be treated. It is not the way any well-minded person would intend it to be.

In speaking to these families, the same words come from their mouths. There is no planning, there is little understanding and they have no faith in a system that has let them down. Many are not in crisis, but too many are terrified to think of how that might change. Far too many are gripped by an existential dread, a cloud of anxiety hanging over their every living breath. We owe it to these families and adults to create a system that works for them. Our motion here clearly articulates how. I urge the Minister and the Government to support it or, at the very least, have the courage to acknowledge the problem and reimagine a system that treats every person in this situation with the dignity that they deserve. Anything less is an admission of failure. I ask the Minister not to fail. These people I meet are counting on her. The next time I knock on their doors, I will remind them of this day and of the Minister's inaction.

Norma Foley (Kerry, Fianna Fail)
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I thank the Deputies for bringing forward this Private Members' motion.

My Government colleagues and I are acutely aware of the challenges raised in the motion. At the outset, I sincerely recognise the work of all those who continue to advocate for and support people with disabilities and their families.

On the formation of this Government, the Taoiseach and Tánaiste were clear that a singular priority was to be given to disability so as to bring about a step-change in services for disabled people in Ireland. In this regard, as Deputies will be aware, for the first time, an office was established in the Department of the Taoiseach, Deputy Micheál Martin, dedicated to prioritising the needs of people with disabilities right across the whole of Government. Working with that office, the Department of Children, Disability and Equality is absolutely committed to seeking to expand and reform specialist disability services in order to maximise individuals’ independence and support them to live lives of their choosing in places of their choosing.

Since my appointment as Minister, I have met with many disability groups, organisations, advocates and disabled people to hear first hand about their lived experience and, importantly, to hear from them what we need and what we must do better to ensure quality and equality of life. Long before I became Minister in this role, I engaged with many in a similar fashion. I have also met some of the family members involved in the Before We Die campaign and appreciate they have been referenced this morning. I absolutely accept they are fighting tirelessly to highlight the need for us to ensure their loved ones are cared for and provided with appropriate housing, as and when it is needed. For far too many families, placements are made at the last minute, causing distress to individuals and their families. I am also aware the Taoiseach, Tánaiste, Minister of State, Deputy Higgins, and many other members of the Oireachtas, including many present, as has been referenced, have done likewise. Along with many other disability advocates, they have collectively spurred on the Government and all in this House to drive on with this important work.

I must also acknowledge this focus on disability has not been limited to the Department of Children, Disability and Equality. I was involved in putting together the programme for Government and I can confirm it recognises the requirement for a whole-of-government approach to advancing the realisation of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. With that in mind, in 2025, the Department of Children, Disability and Equality published the National Human Rights Strategy for Disabled People 2025-2030, which was developed with strong input from disabled people and representative organisations on the issues that matter the most to them. One of the key pillars of this strategy outlines the need for a collective approach to housing supports needed for disabled people. Under this pillar, the Department of Children, Disability and Equality, together with the Department of Housing, Local Government and Heritage, is working in collaboration with a number of other Departments and agencies, including the HSE and local authorities.

The National Housing Strategy for Disabled People 2022-2027 provides the framework for the delivery of housing for people with all levels of disability. The Minister, Deputy Browne, and I, together with officials, have engaged for a considerable amount of time and have made significant progress through the implementation structures established under this strategy. This includes establishing the levels of unmet need for specialist disability residential services in each county or local authority area to inform the setting of targets for the period from 2027 to 2030 in the upcoming local authority housing development action plans. Importantly, I welcome the circular issued by the Department of housing to local authorities, to communicate these levels of unmet need and set out their responsibility, in conjunction with the Department, in developing housing development action plans, which will set annual local authority social housing targets for delivering appropriate accommodation solutions for people with complex disabilities. While some local authorities have been proactive in doing so, this important step ensures that for the first time, all local authorities will now be building housing for those with complex disabilities. This will deliver a significant increase in the number of appropriate homes for people who need them, with a much better geographical spread to ensure they can remain in and of their communities. I thank my colleague, the Minister, Deputy Browne, for his commitment to this matter and for the work under way.

We know and agree that available housing is part of the challenge but we also know the system needs reform. In line with commitments contained in the programme for Government and the national human rights strategy, the Department of Children, Disability and Equality is now developing a new vision and reform strategy for disability services. This work will be critical in ensuring we can deliver high-quality, flexible, human rights based services to all those who need them into the future. It will set out an ambitious and far-reaching programme of reform to improve services over time. This work gives us a huge opportunity to look at how to fund and deliver services and set in place a plan to reorient and reform services to create more effective governance and more efficient systems, to work towards the delivery of more person-centred supports for disabled people.

In particular, I am keen that this new strategy prioritise early intervention as a principle, so we can strengthen planned provision. While certain services will always be required to address urgent and unforeseen circumstances in peoples’ lives, I want to continue the move away from crisis interventions and towards more planned and person-centred provision. The Minister of State, Deputy Higgins, and I will be working to make the maxim "right support, right place, right time" a key pillar of policy and action. We have been working closely with stakeholders on this new reform strategy, including advocacy groups, disability umbrella groups and representative bodies, and will commence a further round of outreach in the coming weeks. I intend to bring forward specific proposals arising from this work towards the end of the year, depending on progress and the outcome of ongoing engagement with stakeholders.

In addition to the work under way to inform the vision and reform strategy, the Department is undertaking research and progressing policy development throughout 2026, with a view to developing a new policy framework for specialist disability residential services. This policy development process will consider a wide range of matters relevant to specialist residential services, including models of service and how we can ensure common-sense approaches to residential supports are taken.

The Department is also advancing the development of a policy framework on community-based supports, including home support and personal assistance. These supports play a critical role in enabling disabled peoples’ independence and participation in their communities. The work will also consider the appropriate role of personalised budgets. The objective of the work is to explore opportunities for a more holistic and person-centred approach to how these supports are structured, organised and delivered, with the aim of enhancing autonomy and choice and ensuring that supports operate as part of a more coherent and responsive system for disabled people. Engagement with stakeholders, particularly those in receipt of these services, will be an important part of the reform programme under way.

Alongside this significant policy work, significant levels of funding have been provided to specialist disability services in recent years, most particularly in budget 2026, which saw a funding increase of €628 million, an increase of almost 20% on 2025. HSE specialist disability services now have a record budget of €3.9 billion to support us to do the work we need to do.

I will turn now to the substance of today’s motion. At the outset, I acknowledge that the overarching objective to provide timely and appropriate specialist services for people with disabilities is one that all of us, across the House, are working to achieve. I have alluded to some of the significant policy and reform work under way. Therefore, the means by which the motion proposes to address the challenges raised may not specifically align with the approach being taken, but I absolutely accept that the underlying goals are the same and I accept the Deputies' sincerity in seeking to achieve them. For example, while there are no plans for a strategy as specifically set out in the motion, I have referenced work that is well under way on a vision and strategy for the future of disability services, as well as specific policy work on areas including residential services, personal assistance and home support and the role personalised budgets might play. While the motion sets out various issues that such a strategy would comprehend, some of these issues are already being addressed and many others will be addressed in appropriate ways through the work currently under way.

I will speak about some specific issues referenced in the motion and take the opportunity to highlight examples of how some issues are being addressed. While the motion calls for a move to multi-annual budgeting, it is important we acknowledge that unlike the position for capital expenditure, where multi-annual commitments are made under the national development plan, the Estimates process for current expenditure allocates funding on an annual or single-year basis. The programme for Government includes a commitment to developing a multi-year capital plan and the Department is continuing to work closely with the HSE to develop a multi-annual strategy plan for disability capital. A number of new measures are in train to move towards planned provision of residential supports, including the provision of planned residential placements under a new initiative, as outlined in the HSE’s 2026 national service plan. In addition, with additional funding secured in recent budgets, new HSE housing co-ordinators and residential planning and review teams will be in place this year to co-ordinate and oversee the delivery of the new residential placements.

The HSE continues to work to increase the capacity of section 38 and 39 providers and reduce dependence on emergency placements with for-profit providers.

Every effort is made by the HSE to provide residential services as close to family and natural supports as possible, and we need to more in this space.

I hope that I have demonstrated some of the important work already under way that addresses many of the concerns raised in the motion. We all want to ensure that services develop and grow to meet people's needs and that they do so in a manner that is person-centred. I absolutely appreciate the goodwill and commitment of everybody in this House. I look forward to working with Members to achieve the joint objective we have, which is to ensure a better outcome for people with disabilities.

Cian O'Callaghan (Dublin Bay North, Social Democrats)
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It is customary for a copy of the Minister's speech to be provided during Private Members' business and it is regrettable that was not done on this occasion. It is also regrettable that in a ten-minute speech, it was after eight minutes that the Minister decided to turn to the substance of the motion. Not all of it, but a lot of the contribution did not specifically address the items in the motion. That is regrettable.

On the approach of putting the responsibility on local authorities, they obviously have a role to play. However, it is not clear from what the Minister has said, and families will be asking and wanting to know, what targets are being set for 2027 to 2030. Are those targets going to meet all unmet need? What is the situation on that? While local authorities have a role to play, all responsibility cannot be shifted onto them. There needs to be ring-fenced funding and a clear plan directed by the Government. Without that, all we are going to be doing is making piecemeal progress.

I thank Deputy Quaide for his work on this motion. I thank everybody who is involved in the Before We Die campaign. I have had the privilege of meeting families and parents of adults with intellectual disabilities in my constituency. They have shared their stories and experiences. Of course, they should not have to do that. They should not be put through that to get access to what are basic human rights.

One parent who contacted Newstalk earlier in the year described being in an elderly couple, struggling significantly with health issues. They were told by a very good day service that there were simply no places. They will, sadly, die sooner rather than later because they get zero respite and never get a chance to recoup their energy. They were told that their son could be put anywhere in the country. That is the experience of parents all over the country. When parents die, an adult with an intellectual disability, their family member whom they love and care for, is left stranded. At that time, the person with the intellectual disability loses their mum or dad, their carer and advocate, their home and community, and potentially their friends too, all at the same time. It is incredibly traumatic and distressing. It is cruel. There needs to be ring-fenced funding and a clear plan.

The survey that was carried out showed that caregivers are asking for a proactive, multi-year transition model. They want their loved ones established in supported living or residential care while their parents are still alive and healthy so they can visit, help them to adjust to a new routine and ensure a smooth, trauma-free transition. That is not too much to ask.

I will read what was stated by one of the parents who contacted us as part of our survey. The parent, who is from Dublin, said that as an elderly parent, they are absolutely terrified about what will happen to their lovely son when they cannot care for him anymore. They do not want him put out to tender to the highest bidder like he is a job lot. He is, the parent said, a beautiful, loveable human who deserves better than this.

A parent from Galway described what it is like, at almost 70, to look at your 30-year-old daughter, who has tried so hard to live a good life despite her multiple challenges, and yet keeps giving to those around her. The parent said that they know in their heart that this country, and especially the policymakers, have abandoned her now and will continue to do so just because she is not characterised as a valuable voter. The parent went on to say that "heartbroken" is often a term loosely used, but as elderly parents they live a life of being exhausted and heartbroken.

Sinéad Gibney (Dublin Rathdown, Social Democrats)
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I thank Deputy Quaide for all of his work on this motion. I thank Deputies Cairns and Cian O'Callaghan for regularly using their leaders' time to push this issue. I will also acknowledge one other person from our party, namely, former Councillor Dave Quinn, who is representative of this community, of families who essentially are caring for adults with intellectual disabilities, knowing that they are living in a State which now has an unwritten policy. That is what this is. After years and years of inaction, it becomes an unwritten policy that the expectation is that for adults with intellectual disabilities, their ageing parents will take care of them and if they are fortunate enough, their estate might be able to assist with their independent living after they die.

Like Deputy O'Callaghan, I think it is regrettable that we have only got the speech now. There was plenty I wanted to pick up on. I will pick up on one point that the Minister made towards the end of her speech. She said, "Every effort is made by the HSE to provide residential services as close to family and natural supports as possible", having regard to will and preference. Like other Deputies here, I have been fortunate enough to meet the inspiring families in my constituency who are dealing with this challenge. I want to talk about a specific story. A person approached the HSE. They were in a fortunate enough position to be able to say that they would donate to the HSE a home. They found a location where they knew the services were adequate for their child's needs. They said they would give the HSE this home so they would know that their adult child was able to stay in that location. The HSE's response to that offer was that it would take the home but could not guarantee where the child would be placed. They offered a house, and that was the response they got. That does not spell "every effort" to me.

The Before We Die campaign has been incredible in amplifying this issue and bringing it to national attention. We, as a party, are going to continue to maintain that pressure here in the Dáil Chamber and at every opportunity that we get to ensure we move from the listening mode, which the Government is clearly in, to the action that is required.

This State, sadly, has still not embraced the rights-based model for disability that is espoused in the UNCRPD. At best, we have moved towards a medical model of disability, but in many ways, we remain rooted in a charitable model of disability, which fails to recognise the fundamental rights that should be enjoyed by every person in this State, regardless of whether or not he or she has a disability.

I acknowledge the families to whom I have spoken. Three mothers recently came to a clinic of mine, namely, Claire, Noreen and Nessa. I want to specifically mention the "The ID Zone Podcast" that they have put forward. That is another example of how this community is supporting each other where the State has failed them.

Rory Hearne (Dublin North-West, Social Democrats)
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I thank Deputy Quaide for the work he has done to bring forward this motion and, indeed, the commitment of the Social Democrats to prioritising people with disabilities through its policies and what it does.

We should be straight here. The Irish State has never treated disabled people as equal citizens of this Republic. One or both of Fianna Fáil and Fine Gael has been in government since the foundation of the State. What is the history? It is one of shameful treatment. People have been hidden and institutionalised. What we are seeing today is a new form of individualised institutionalisation. Adults with intellectual disability, when their parents die or they cannot be there for them any more, are being hidden in all sorts of individual privatised homes without the care or the connection to their community. It is an absolute failure, and it is failure because the Government knew about this. Disabled people have been denied their basic rights. This is why I have brought forward a Bill to put the right to housing in the Constitution. We are very clear that disabled people do not have that right. It is important because a right to housing is not just about a roof over your head. It is about adequate and appropriate housing so you are supported for your needs. One of the most shameful aspects of this is that the Government has been aware of this problem and has let it grow. It is a failure of the HSE and the Department of housing, but ultimately it is a failure of the taoisigh and tánaistí who have failed to prioritise the issue.

I highlight the Before We Die campaign for the work its representatives have done. They have brought the issue to light. They are saying that they are not accepting it, and that is the difference between now and other times in the history of this country. Disabled people and their families are saying they will not accept this any more. We in the Social Democrats stand with them and say that we are not accepting it either. This is not okay.

I will connect this issue to the issue of housing. Some 1,600 households with someone with an identified intellectual disability are on the waiting list, which is an 18% increase since 2023.

These are people who you know about, but, of course, the Government has privatised social housing and has not delivered social housing sufficiently in its broadest context, with support services as well. In my constituency, I visited St. Michael's House on the Ballymun Road. It showed me the great services it provides but it has a waiting list of 55 individuals. Eight are 66 years of age or over, 22 are aged between 46 and 65, and ten are aged between 18 and 30. Forty of these individuals are classified as high-risk, highlighting the urgent need for placements and increased resources to provide care for them, but St. Michael's House has had to pause the waiting list. We do not know how many more people need it. This is a failure. The position has to change now.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I thank Deputy Quaide and the Social Democrats for tabling this motion. I commend the Before We Die campaign, particularly Tony Murray, his wife Susan and their daughter, Aoife. Before We Die is aptly named. At the disability committee, many people have spoken about the fact that many parents feel frustrated and are incredibly worried about what will happen to their adult children with an intellectual disability. They are not sure what the future holds and some even say they feel incredibly guilty because they think that maybe their children will die before them, which would deal with that issue. Imagine having to feel like that. It is obviously utterly scandalous. I do not know how many times recently we have discussed the issues that exist and the failure to deliver decent disability, respite and residential services. We know the 101 issues that exist in relation to schooling and education for those with disabilities. We are not at the races in any way, shape or form.

I also commend, in my constituency, the work done by the recently stood-down Inclusion Louth, which was previously Dundalk Parents and Friends of the Intellectually Disabled. I think of Eoghan Bailey, Mary Darcy, Mary Connolly and many others. They are a group of parents who came together because they needed to make sure there was a future for their children who had disabilities. It is hard to believe that I can talk about the work they were doing 30 years ago, or further back, and consider that we are still no further on.

What is the big issue that has been brought to us? It is that parents are worried that there is no plan in place for their child. If somebody cannot cope and that child ends up in an emergency department or somebody does die and there is nobody to look after that child, the State will then kick in. It will not have the preparatory work done beforehand but it will kick in, and then who is ready to jump in? It is the for-profit operators. There will be disputes about how much this costs, but let us assume on the basis of them being for-profit operators that they will charge more, because that is why they are in business.

What happens? We end up in the position that the only people who can operate are those who cost the State and the taxpayer more. They may have a house which could be three counties over. The perfect situation is one where there is a proper conversation between the local authority, the HSE and all the disability services. I heard Bernard Gloster, the previous chief of the HSE, say that the local authorities, from his point of view, should provide the housing and that disability services should be provided on top of that. If done in a completely planned and organised way, with the correct planning and funding, it is cheaper and better. An awful lot of parents are quite happy to look after their children. They just want to know there is a proper plan in place for the future. I find it hard to believe that we are still talking about this issue at this stage. The number of people who do not have a plan is through the roof. I commend the work of Before We Die.

Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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I join my colleague in thanking the Deputies for bringing forward this motion. I also commend the work of the Before We Die campaign. I had the honour of chairing the petitions committee when its members presented to us a couple of weeks ago. It was a very powerful meeting. I also pay tribute to Nora Roban and the Remember Us group in Balbriggan. Whether the Government works with them or against them, they are going to build their plan of Homes for Us because they are very determined and it is very needed. I urge the Minister to talk to her colleagues and revise her definition of what does and does not constitute a congregated setting. Nobody is talking about going back to the high-walled institutions of the past.

Last night, I spoke to a person I know very well about her daughter, who has an intellectual disability. I asked her how she felt about this campaign. She said that from the day after she was told of her daughter's diagnosis, the thought that has kept her up and awake at night, every night, is "What is going to happen to her when I am gone?" People say there is no point in worrying about the things that you cannot control, but this is a relentless worry, every night. Along with all the worries that every other parent has, and, believe me, that never stops, she worries about who will look after her daughter when she is gone. She has no faith in this Government. The Minister says in her script that she is aiming for the right support in the right place at the right time. Speaking on behalf of the people I have spoken to, there is no support in any place at any time, and the Minister needs to do better.

Natasha Newsome Drennan (Carlow-Kilkenny, Sinn Fein)
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This issue is deeply close to me. For almost 20 years, I worked as a carer for older adults with disabilities. It was always so much more than just a job. In that role, I made life-long friendships with people I supported. To help them live their best life, independently and with dignity, meant so much to me. The harsh reality today is that the State is increasingly failing people with disabilities and their families. We have all sat across from parents in their 60s, 70s and even 80s who are still the primary carers for their adult sons and daughters. They are exhausted, burnt out, and their own health is at risk. Many get little or no respite, but worse than that is the exhaustion and crushing, constant fear of what will happen to their son or daughter when they are no longer there. No parent should ever have to carry that burden. No parent should have to lie awake at night wondering if their child will have a safe place to call their own when they are gone.

The Before We Die campaign laid this bare. A survey of 1,000 families showed that just 2% had a formal housing plan in place for their son or daughter with an intellectual disability. This is not just a policy failure but a human rights failure. Article 19 of the UN Convention on the Rights of Persons with Disabilities is crystal-clear that disabled people have the right to live in the community with choices equal to everyone else. The Government signed up to that convention and now needs to honour it. The Minister needs to stop burying her head in the sand. We need an ambitious plan for publicly owned housing, not a profit-driven private model that fails citizens and costs taxpayers dearly.

Pa Daly (Kerry, Sinn Fein)
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Every parent worries about their children. That does not stop when they get to 18 years of age. I know many people have spoken about meeting the Before We Die campaigners and parents, and how inspiring they are. While I have great respect for the people I have met, I would not swap with them because they have come across to me as exhausted and depressed. When the Áras na Féile respite centre in north Kerry closed, I was in a room where the parents present were almost beaten by the difficulty caused by the one bit of respite they had being removed from them.

Across the county of Kerry, we have a centre in Cahersiveen which is only open 34 weekends in the year. Those facilities are there but the funding is not available to increase to weekly services or to even increase the number of weekends that facility is open.

I see the statement and the circular which has been issued by the Department of housing that the local authorities will have more responsibility and they will now be building housing but I have to say the Government’s policy of increasing the number of units throughout the State is not going to make any difference. From what I have seen on the ground, there seems to be very little tie-in between the HSE capital projects and the local authorities. There should be a focus on more accommodation in town centres, close to services to help the parents of the adults with intellectual disabilities.

Ann Graves (Dublin Fingal East, Sinn Fein)
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I strongly support this motion which seeks to provide clear, identified and funded pathways for people with intellectual disabilities to move from home to a suitable residential placement and which supports the campaign by Before We Die, a family-led advocacy group seeking urgent ring-fenced Government funding for residential care and housing for adults with intellectual disabilities. Their needs are threefold: purpose-built housing; establishment of a clear, gradual transition plan rather than emergency placement; and a dedicated Government-invested programme rather than the current piecemeal funding which only covers a faction of the necessary residential places.

I want to acknowledge the parents who founded Before We Die. They fear for their adult children’s future when they pass away or can no longer provide care for them. This fear is very real. Over 2,000 adults with an intellectual disability live with parents aged 70 or over, with 500 of those over 80. Some parents are providing full-time care into their 90s. I have worked with many parents who are distressed and heartbroken, worrying about what will happen to their adult children when they themselves are no longer able to provide care for them. Their biggest fear is that their children will end up in an emergency department.

Families need and deserve choice. This choice can be between purpose-built congregational living with multi-disciplinary teams in place or families may prefer that their children live independently in the community. This needs to be catered for. The Government has a legal and moral obligation to provide these services. Ireland has committed to protecting the rights of people with disabilities through legislation and the UN Convention on the Rights of Persons with Disabilities. This convention recognises the rights of people with disabilities to live independently and be included in the community. Providing appropriate residential placements is essential, not only for improving quality of live but also for protecting human rights, supporting families and promoting social inclusion.

Darren O'Rourke (Meath East, Sinn Fein)
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I call Deputy Ó Laoghaire.

Donnchadh Ó Laoghaire (Cork South-Central, Sinn Fein)
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Is it two or two and a half minutes?

Darren O'Rourke (Meath East, Sinn Fein)
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It is a minute and a half.

Donnchadh Ó Laoghaire (Cork South-Central, Sinn Fein)
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Go raibh maith agat.

Like many, I have engaged with the Before We Die campaign. The meeting I attended in Cork was one of the most powerful and affecting meetings I have ever attended. It was troubling as well but the fierce love of these parents was obvious. At the end of the day, they want to care for their children as long as they can but they are deeply frustrated. I want to acknowledge the fact that a lot of progress has been made by the group in Cork. I acknowledge Deputies Quaide and O’Sullivan who have been working with the city and county councils which have adopted a positive attitude and is making progress on a local level, to be fair. However, the numbers are absolutely enormous. I would never have realised that there are 2,000 adults with an intellectual disability with parents over 70 years of age, and 300 of them are in Cork, with 500 across the State with parents over 80.

Some of the circumstances we hear of are heartbreaking. I have heard of cases where people were advised by people in the HSE that if they are in a crisis situation to bring their child to the emergency department and it will resolve itself from there. This should be the most carefully handled sensitive transition and effectively people are being asked to go with a sudden rupture. It is completely unacceptable. It is a profound failure. What parent would want that for their child? It is not good enough. We need to do better.

The congregated settings policy may have come from a good place but we are letting the perfect be the enemy of the good.

Darren O'Rourke (Meath East, Sinn Fein)
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The Deputy has a bit more time as a speaker dropped out.

Donnchadh Ó Laoghaire (Cork South-Central, Sinn Fein)
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I am finished now, so it is okay. I thank the Acting Chair.

Denise Mitchell (Dublin Bay North, Sinn Fein)
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I welcome the motion. Many families in my constituency contacted me ahead of this debate. Listening to their stories, it is clear they go above and beyond for their sons and daughters. Many of their sons and daughters have moderate, serious or profound intellectual disabilities. Some parents find it so difficult to find the time to campaign and advocate on this issue which is why it is up to everyone in here to do that on their behalf and address these issues head on. Over 2,300 adults with intellectual disabilities are currently being cared for by a parent over 70 years of age. These parents are terrified about what will happen if they can no longer provide that care. One lady in my constituency contacted my office and told us how she is putting off a hip operation she badly needs. Why? It is because she is a lone parent caring for her daughter who has high support needs. She fears that while she is recovering, she simply will not be able to care for her daughter. These are the kinds of choices people are being forced to make. It is a very simple question they are asking: who will care for my son or daughter if I am no longer able to do so? That is why we need a one-stop-shop that can process and manage applications and link to the Departments of housing and disability, the local authorities, service providers and families.

People with disabilities have the right to live as independently as possible in their communities. If we do not provide adequate residential and supported living options, we are denying these people their rights. The upcoming budget gives us a real opportunity to get this right. That means proper ring-fenced funding.

Louis O'Hara (Galway East, Sinn Fein)
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No parent should have to worry about what will happen to their child when they can no longer provide care for them, yet years of underfunding and a failure to plan has left our residential support system in crisis and families are left carrying the responsibility even as parents themselves age into their 70s, 80s and beyond. I was even told about a woman who is 102 years old in County Galway caring for her adult child.

Yesterday I spoke to a family in my constituency in this exact position. The parents are in their 70s and care for their 25 year old son who suffers from severe autism and epilepsy. They are very worried about the future and what will happen when they can no longer care for him. They stressed that a transitionary period is key, especially for people with autism. They cannot just be uprooted into an emergency placement down the line. The parents need to be there for the transition to ensure that it works properly and does not cause challenges for that person or, indeed, those who will be caring for them. However, as it stands, that will not happen because they cannot secure long-term residential care now that would allow them to begin that transition at their own pace. This is the experience of thousands of families. The Government has a responsibility to ensure that adults with intellectual disabilities have access to suitable housing and support services that meet their needs in their own community. Adults with intellectual disabilities have the same right as every other citizen to live with dignity, safety and independence and the Government has a legal and moral obligation to provide these services. There are so many basic things we are not getting right. The lack of data collection on the needs that exist in our community and the lack of personal transition plans, the challenges that exist with the social housing application process for adults with an intellectual disability, section 38 and section 39 providers are left completely unable to compete with private companies because they lack multi-annual funding, they cannot access community access support team, CAST, funding and, of course, the lack of ring-fenced funding to address this crisis is also an issue.

Parents deserve so much better as do the adults with intellectual disabilities. The Minister of State needs to listen to families, support the motion and, crucially, make the changes necessary to provide safety and security to families.

Mark Wall (Kildare South, Labour)
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I wish to start by thanking Deputy Quaide and the Social Democrats for bringing forward this motion.

It is very important for so many people in this country. It is an issue that comes up very regularly in my own office. As has been said, over 2,000 adults with an intellectual disability in Ireland live with a family carer over the age of 70 and 450 of these adults are cared for by parents over the age of 80. We cannot imagine what that is like day to day for those parents, who ask who is going to look after their adult child when they pass away. It consumes them day in, day out. It is the one question they ask and it is the one question that is on their minds when they get up in the morning and when they go to bed at night. That is the reality for many ageing and older parents of adult children with intellectual disabilities in this country because they cannot bear the thought of not knowing what will happen to their loved ones should they pass away before them. That is the hardest truth in this country at the moment.

A serious issue has been neglected by Governments, which have failed to keep pace with the growing population of young adults who find themselves in such circumstances. Because of this, we are told Ireland could have a shortfall of up to 2,300 residential places since the recession and overall demand for nearly 4,000 extra places as we move forward. These are family carers who are working 24-7 without a break. They are adults living with a very uncertain future.

There is also the ongoing national scandal of young and middle-aged people with disabilities trapped in nursing homes. It has been five years since the Ombudsman published the Wasted Lives report, showing that over 1,300 young and middle-aged disabled people were being forced to live in nursing homes because of the lack of suitable accommodation for them to live independently. Five years on and more than 1,100 people remain trapped in nursing homes. This Government and the previous Government have barely managed to make a dent in this unfortunate figure, while more and more young people continue to be admitted into nursing homes year after year. This is an awful indictment of Government failure and we simply need to see action quickly. Mention was made of the competition between the HSE section 38 and section 39 organisations and private operators. It is simply not good enough that private operators have the advantage that they have compared with section 38 and section 39 organisations.

I will conclude on the matter of personal assistance hours. Under the National Human Rights Strategy for Disabled People 2025-2030, the Government has set itself an ambitious target of delivering an additional 1 million personal assistance hours. However, between 2024 and 2525, the Government went backwards, with the number of hours decreasing by 0.5%. That is not progress; it is regression. If the Government is serious about its obligation under the UNCRPD, we must see a much greater investment in personal assistance hours to support people with disabilities to live independently, and that must include investment across home supports, day and community services, residential and independent living.

George Lawlor (Wexford, Labour)
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I strongly support this motion. For too long, families across this country have lived with a fear that most of us here in this Chamber could scarcely imagine. It is not a fear of what will happen today or tomorrow but a fear of what will happen when they are no longer here. They lie awake at night wondering who will care for their son or daughter, where they will live, whether they will be safe, whether they will be happy or whether they will still be connected to the people and places that they love and know. That fear is real. It is lived every single day by families throughout Ireland.

I am thinking today in particular of my constituent Jane Johnstone and her two sons, Evan and Daniel. Jane and her late husband, Rod, devoted their lives to loving and supporting their boys. Like so many parents of adults with intellectual disabilities, they did everything the State asked of them and more. They carried the responsibility, the worry and the advocacy that should never fall on families alone. The loss of Jane's husband, Rod, in 2014 was a devastating blow for Jane and the boys but she is not asking for special treatment. She is asking for certainty, dignity and a plan. Surely that is not too much to ask in what we term a modern republic. Far too often the State intervenes only when a crisis exists - a parent dies or becomes ill or a family reach breaking point. That is not planning; it is failure.

This motion recognises that people with intellectual disabilities are not service users to be fitted into whatever vacancy happens to exist. They are citizens of this nation with hopes, preferences, relationships and ambition. We owe that to every person with an intellectual disability, to every ageing parent carrying the burden of worry, which is intense, to families like Jane, Evan and Daniel Johnstone, and to the memory of Rod, who wanted nothing more than what every parent wants, the knowledge that his children would be safe, supported and valued long after he was gone.

Robert O'Donoghue (Dublin Fingal West, Labour)
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I thank Deputy Quaide and the Social Democrats for bringing forward this important motion. I also want to acknowledge the Before We Die campaign in my own constituency of Dublin Fingal West and the Remember Us group from Balbriggan, which continues to campaign with such determination. I have met families in my constituency and listened to their very personal stories and I thank them for sharing them. Those conversations have stayed with me. I have heard the fear and anxiety of parents in their 70s and 80s who have spent their entire lives caring for their sons or daughters and now ask one heartbreaking question, "What will happen to my child when I’m gone?" These families have spent years navigating services that are fragmented and under pressure while housing supports remain inadequate. Families have also raised concerns about the growing reliance on private, for-profit residential services. They want something different. They want their sons and daughters to live as independently as possible in their own communities with choice, dignity and personal autonomy at the heart of every decision.

Ireland has committed to the principles of the UNCRPD, including the right to independent living and community inclusion, but there remains a gap between those commitments and the lived reality of too many families. That is why I want to recognise the Remember Us campaign regarding its Homes for Us pilot proposal. It offers a community-based model where people have their own homes, the supports they need and the opportunity to remain close to family and the communities where they belong. This is not simply about housing. It is about dignity, security and giving families the peace of mind that their loved ones will have a place to call home. I urge the Minister to help Remember Us to fund this pilot and to roll it out in communities across Ireland.

Marie Sherlock (Dublin Central, Labour)
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I very much welcome this very important motion and thank Deputy Quaide and the Social Democrats for it. I start by paying tribute to the Before We Die campaign, particularly Tony and Susan Murray, Alan and Vera Hughes and the thousands of other parents across the country who have had to tell their stories, lay their lives bare and tell the story of their children in order to advocate for others.

There needs to be a conversation. We very much supported the theory behind decongregation when it was put in place 20 years ago. While we recognise that the theory of decongregation made absolute sense in principle, there has to be a recognition that in practice, it is failing. It is failing because of the lack of forward planning and a failure to put in place the infrastructure to ensure that those with intellectual disabilities can live a fulsome life in the community.

The second key issue here concerns the theory behind the assisted decision-making Act. I very much welcome the intention to have a much greater human rights approach, but the reality is that the approach that was supposed to help the very people envisaged in that Act is actually undermining the State services that should be put in place to ensure that they live as full a life as possible. This State has failed to plan. When I talk to the section 38 and section 39 organisations, they tell me about the extent to which their hands are tied. They have properties but they can only put a certain number of rooms into them. There are other houses that are lying empty. There has been a huge issue with regard to State funding in this space, but the Government also needs to ensure that sheltered housing is put in place for those with intellectual disabilities when their parents or others in the family can no longer care for them. It is utterly unacceptable that people reach an older age and have nowhere to go but nursing homes.

Paul Murphy (Dublin South West, Solidarity)
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I thank the Social Democrats for bringing forward this good motion and the Before We Die campaign for putting this on the political agenda. For too long adults with intellectual disabilities and their parents have faced the future with dread, not knowing what will happen to them after their parents pass away. The awful fear is that after they die, the adult child will go from a life where the best care has been lovingly provided by their parents to an uncertain, unplanned and even chaotic future. Over 2,000 adults with an intellectual disability are living with parents aged 70 or older, including 500 whose parents are over 80. This motion is urgent. It cannot just be allowed to pass because being seen to oppose it would be too embarrassing for the Government and then left on the shelf alongside everything else the Government knows it should do but will not because its priorities lie elsewhere.

If the mark of a civilised society is how it treats its most vulnerable members, then the lack of care shown towards adults with intellectual disabilities marks this State as a profoundly uncivilised one. Successive Fianna Fáil and Fine Gael Governments, in power since the foundation of the State, have failed abysmally to care for people with intellectual disabilities. They have been the first group targeted for cuts and the last to have funding restored. This is what the Government means when it talks about hard choices. It is never about targeting about the rich or the powerful. It is always about kicking the vulnerable and the poor. The motion points out that the number of residential places has still not been restored to pre-2008 levels and that an additional 3,900 residential places will be needed just to achieve that. If the Government cannot care for disabled people now, when it has billions of euro in surplus, when is it ever going to do it? The answer is never, unless it is forced to by campaigns like this one. The absence of State care was what prompted so many carers and disabled people to angrily reject the so-called care referendum, with its mealy-mouthed wording about striving to support family care. Carers have had enough of "Aren't ye great?" The Government needs to stop talking and start acting and develop a plan to implement all of the actions outlined in this motion.

Ruth Coppinger (Dublin West, Solidarity)
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I thank the Social Democrats for bringing forward this really important topic about older and disabled people, and what kind of home they can have. The current system is completely unsatisfactory. Older and disabled people are generally in private nursing homes run for profit. I spoke to a parent before this debate about the situation in my constituency. Her son, who gets respite four nights per month, was not able to get that respite for months because a client with severe needs was being accommodated and the whole building had to be cleared for that. It just shows the under-provision of the vital accommodation people need. People with intellectual disabilities losing that familiarity is very upsetting. There is also no respite care in Dublin 15, which is a huge part of the constituency.

This parent brought an issue to my attention. She is also thinking about what will happen to her son after she dies. She is an older parent, and her son was earmarked for a potential long-term place. She asked if she could view the property and was told no, that she could just be shown photographs as there were people living in the property. Is this for real? Obviously, a parent wants to see where their child is going to end up. Then the place just frittered away. That is something that needs to be looked at. This is a permanent home for somebody.

Another issue raised is the fear of violence against sons and daughters. This parent witnessed violence against a client when she was in a park. She duly reported it to the authorities and to the Garda, but if that is going on in a park, what is going on behind closed doors in these facilities where there are no cameras? That is a real fear so many parents have. Another fear is about money. This parent said her son's ATM card is taken off him when he goes into the accommodation. We are talking about private companies and agency staff. There are naturally fears among parents about what might be happening with that. We need a completely different system that is invested in, and not run by private companies for profit. It is time to deal with this with public investment.

Charles Ward (Donegal, 100% Redress Party)
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I thank the Social Democrats for bringing forward this very important motion. It calls for the Government to publish a five-year national strategic community living strategy for adults with intellectual disabilities. We are in desperate need of a strategic outline project for regional planning and annual targets to reduce waiting lists. Inappropriate placements for those with intellectual disabilities are happening throughout. The private model is benefiting from what should be a duty of care to our citizens. Disabled people, families and advocacy organisations have continuously called for progress towards community inclusion and away from the institutional model of care. Home support services must be designed around individuals rather than determined by available vacancies, which is the current model in Donegal. A home represents far more than accommodation. It provides security, privacy, independence and a sense of belonging and community. Planning for the future and living arrangements should begin before a family reaches out at crisis point, as is currently happening. Ensuring people can decide where they can live into the future and who they live with should be planned well in advance. However, many families feel unable to make such arrangements in advance because of the system. Instead, they are forced to wait until a space becomes available. Greater transparency is needed. We are unaware of the numbers of people on waiting lists and out-of-area placements. The absence of a national waiting list is another issue. It remains unclear. People have nowhere to go, particularly in Donegal, where we have a defective concrete crisis. Adults with intellectual disabilities are living in homes that are crumbling and they have nowhere to go. I thank the HSE in Donegal, which recently expanded the community inclusion services in Buncrana, but the local services we need are multiples. We need this spread throughout and it is just not good enough at the moment.

Séamus Healy (Tipperary South, Independent)
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Respite and residential services for persons with intellectual disabilities are in crisis. The United Nations Convention on the Rights of Persons with Disabilities provides the right to live independently in the community with choices equal to others. They must have access to a range of in-home, residential and other community services, including personal assistance. In Ireland these rights are honoured more in the breach than in the observance. The true level of need for residential and respite services is unknown and, consequently, there is no plan to deal with this, meaning that too often the HSE responds to emergency situations. A recent submission to the Oireachtas disability matters committee by the organisation Before We Die is worth quoting. It sets out the stark nature of the current situation. It states, "Our campaign started with a simple question: 'Who will provide the care my daughter needs when I am no longer able to care for her?'" It continues, "It is not uncommon to hear parents say; I would hope my son or daughter goes before me. Then at least I know he or she is safe. That’s how bad the situation is." It further states:

There is an urgent need for systemic change in disability services. It needs to focus on housing and care for adults with [intellectual disability] whose parents are aging and no longer able to provide full-time care. Over 2,000 adults with [intellectual disability] live with parents aged 70 [years] or older, with 500 parents being over 80 [years of age] and some even in their 90s.

What is needed urgently and what is called for in that submission is, first, an emergency funded plan in budget 2027 to address the needs of parents in their 70s, 80s and 90s who cannot wait for systemic change. The Government in the medium term needs to publish a fully funded and resourced five-year plan for community living for people with intellectual disability. It should be prepared jointly by the Departments of disability and housing, the HSE, local authorities and the approved housing bodies. I support this important motion and thank the Social Democrats for bringing it forward at this time.

Paul Gogarty (Dublin Mid West, Independent)
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I support the motion because there are thousands of parents, many now in their 70s and 80s, who are worried about what will happen when they can no longer care for their child with an intellectual disability. This fear is real because, as referenced previously with regard to the HSE, there is no centrally maintained list for residential services. I know the disability capacity review estimates that Ireland needs at least 1,900 additional residential places by 2032 but this is potentially up to 4,000 if we look at restoring 2008 levels. At the moment more than 2,000 adults are living with parents aged over 70 and, as has been referenced, 500 are living with parents aged over 80. This is why upgrading the disability capacity review is urgent. We need a live database integrating disability supports, housing and people living at home who are not counted among any figures. We need proper capacity planning because we are way behind as it stands.

I believe that incremental progress is possible. Some ideas are to establish a single statutory community living pathway with one referral point, have annual regional targets as well as national targets to reduce emergency placements and out-of-area placements, expand public and not-for-profit provision through multi-annual funding while stabilising existing private placements to avoid forced moves - and as Deputy Coppinger has said, it is not ideal to have the private sector running the show - and publish annual data on distance from home emergency placements and progress on individual community living plans.

This model has worked elsewhere. The LSS Act in Sweden, for example, ensures that people with an intellectual disability have a legal right to community living and the CLBC model in Canada's British Columbia reports that over 90% of adults with intellectual disabilities live in community settings rather than institutional settings. Ireland can follow this path with proper targeted resourcing and recruitment. Every adult with an intellectual disability deserves to be treated with dignity, autonomy and security, and every parent wants this for their child.

Finally, I want to give a very special welcome to all of the visitors from Lucan Youth Fun today.

Paul Lawless (Mayo, Aontú)
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I thank the Social Democrats for bringing forward this very important motion, which Aontú will support. According to the Disability Federation of Ireland, there are between 5,000 and 6,000 households with a social housing need due to disability and a total of 10% of everyone on the waiting list are people with disabilities.

I want to raise an important issue in my constituency. A senior citizen who has been caring for her daughter with Down's syndrome for decades is afraid to die, not because she is afraid of death in itself but because she is afraid of the uncertainty about where her adult daughter will end up. This is a child, now an adult, who is being cared for in the most loving and special way and is such a valued member of his family. Unfortunately, however, he is an only child and there is no remaining close family member. This mother is well into her 70s. It is a shocking story that will stay with me forever. It is so sad to think there is no central agency where this family can go for help. There are 2,000 adults with disabilities living with carers aged over 70. This family in Mayo are not alone; indeed, I have met many others. It is sad that in the region of just 2% of these families have a housing plan. The vast majority of these 2,000 families are living in fear of dying.

This issue is very important. There are solutions and many of them are raised in the motion. We can no longer have a situation where families are passed between the HSE, local authorities and service providers in the various regions of the country. Nobody is owning the problem and families are being passed from pillar to post. It is very important that the Minister address this. One agency should be tasked with leading out and developing, in conjunction with the families, a plan for them. I urge the Minister to do everything she can to achieve this.

Michael Collins (Cork South-West, Independent Ireland Party)
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I thank the Social Democrats for tabling the motion, which Independent Ireland will fully support. It is a brilliant motion. I want to put on the record my full support for the Before We Die campaign. I attended a meeting with the group in Cork city recently and I can honestly say it was a greatly attended and very moving meeting. Parents are being left in a crisis situation. This has been coming for a long time. People have been left on their own and it is time for the Government to sit up and take serious action.

The campaign is led by parents of adults with intellectual disabilities. These are not people looking for special treatment; they are mothers and fathers who have spent a lifetime caring for their sons and daughters, who are asking one simple question, which is what will happen to their child when they are gone. It is a question that no parent should have to carry alone, yet thousands do throughout Ireland today. Parents in their 70s, 80s and even 90s are still providing full-time care because there is nowhere suitable for their loved ones to live. Many are exhausted and worried sick about the future. They live with the constant fear that if something happened to them tomorrow, their son or daughter could be left without the support, security and stability they need.

The message from these families is simple and powerful. They want solutions to be put in place before they die and not after. This is a reasonable request. In fact, it is the very least they should expect from the State. Behind every statistic we discuss today is a real person and a real family. There are parents lying awake at night wondering whether anyone is listening. There are brothers and sisters worried about what responsibilities may suddenly fall on them in the future. There are adults with intellectual disabilities who simply want what the rest of us want: a home, community, independence and a good quality of life.

We need a system that plans ahead instead of reacting after the damage is done. We need proper housing options, supported living arrangements, respite services and community supports. We need clear pathways and certainty for families. Most important, we need Departments and agencies working together instead of leaving families to navigate an endless maze of bureaucracy. This issue is particularly challenging in rural Ireland, where families can find themselves with very limited local options. Nobody should be forced to move their loved ones miles away from families, friends and everything familiar simply because suitable supports are unavailable in their own community. We also need better data and greater accountability. If the Government does not know the true level of need, it cannot properly plan for the future. Families deserve transparency and they deserve to know that progress is being made.

Most of all we need compassion. We need to recognise the incredible dedication of parents and carers who have devoted their lives to looking after loved ones. These families have done their part. They should not have to spend their latter years living with fear and uncertainty. The families behind the Before We Die campaign have shown tremendous courage in speaking out. We owe it to them not just to listen but to act. I urge the Government to provide the long-term planning, resources and commitment these families so desperately need.

I was on the board of CoAction for a number of years in a voluntary capacity before I got into politics. That was 15 or 20 years ago and there was talk at that time about a model for independent living for people with intellectual disabilities. It never went from there to where we are today. That model has not really been exercised or brought forward and, where it has, some people find their accommodation might be 60 miles or 70 miles away. This is a bitter pill for people who have cared and saved the State billions of euro down through the years, to think their son or daughter has been taken away from them.

We tried to exercise this model in my community and recently we built 12 houses in Schull. I am involved with Schull Community Care and we had difficulties with this. We paid into the project, which was one of these RAS schemes. We had difficulty in getting two people with intellectual disabilities into one of the houses. We did win the battle but my God it was an uphill battle. Our group struggled for it to happen. It has brought the people joy and this could be the same in every community in the country. Whether it is ten, 12, 20 or 100 houses being considered, a percentage should be given to people with intellectual disabilities to live independently, with a little bit of help. Their families will not be going away; they will certainly be helping and there will also be the help of others. The model in Schull should be copied throughout the country. If anyone wants to sit in a car to go down, I will show it to them in the morning.

There are other issues with regard to people with disabilities. I am fighting for the transport service from Castletownbere to CoAction in Bantry. People need this transport service but for the past six or seven weeks we cannot get answers on whether it will continue. Issues like this are of huge concern.

Grace Boland (Dublin Fingal West, Fine Gael)
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I thank the Social Democrats for affording us the opportunity to speak on this important issue. It is one I have raised several times with the Minister of State. I know she is, as I am, committed to delivering homes for adults with intellectual disabilities in their own communities. I thank her for coming to Balbriggan to meet the amazing Remember Us, which is a parent-led organisation that supports not only children and adults with intellectual disabilities but also their families. It has built a wonderful community.

I have had the privilege of getting to know this community. Its members have shared their hopes and fears, and we have shared tears. The Minister of State has heard this already here today, but the question we all want answered is what will happen to people’s sons and daughters when they die. We have to have a plan, we have to deliver and we have to do more than just listen. We all understand the challenges and the demands, but we need to work together across Government and the local authorities and with the HSE, and we really have to deliver for these families. The fears and uncertainty are too much for us all to bear, to be honest with the Minister of State.

As the Minister of State knows, Remember Us has proposed a pilot scheme, homes for us, which proposes a community-based model that allows adults with disabilities to live independently while remaining connected to their communities and where they have grown up. I know active work is ongoing with the local authority and the HSE on this project. I would really like to see us move forward with a pilot project on this proposal.

I also acknowledge the good work of Prosper Fingal in this space, which also provides residential homes for adults with intellectual disabilities. We owe it to these families to move from discussing these proposals to delivering and having clear plans in place.

Gillian Toole (Meath East, Independent)
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I thank Deputy Quaide and his team for bringing this motion forward. Article 19 of the United Nations Convention on the Rights of Persons with Disabilities refers to the equal right of disabled persons to live independently in their communities - not miles away and not in another county - to choose their residence, to have access to personal assistants and community services and to use public facilities on an equal basis, aiming to prevent isolation. All of that should be within a safeguarded environment as well, yet we have a situation where there has been a failure to plan, and that is planning to fail.

What is required? There are some simple steps that can be taken, which involve inter-agency co-operation and collaboration. First, we require a case management system that would be between the local authorities, the HSE and section 38 and section 39 organisations. The welcome transition funding for those changing from primary school to secondary school could be expanded to include transition in the area of residential planning too. There is also a need for financial supports, personalised budgets and personal assistants. We have to trust parents and advocates, and we have to allow them to control the future for their young person. Accessible transport is important in rural and urban areas. We have to value the role of the people who actually work in the area of personal assistant. We are human beings first and foremost and human doings secondly. I know this cannot be achieved without a very fluid and strong economy, but we have to look at the human economy in this instance and in future.

There is an excellent opportunity in Ratoath in County Meath, where there is an urban regeneration and development fund, URDF, project with planning approved for 14 age-friendly bungalows. We also have a very active and enriching rehab and Prosper group between Ratoath and Ashbourne that would benefit hugely. The amendments to the disability Act should include the right to services and the right to housing. The Planning and Development Act 2024 should perhaps be amended to include a minimum percentage of housing.

Barry Heneghan (Dublin Bay North, Independent)
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Gabhaim buíochas leis na Social Democrats as ucht an rún seo a chur os comhair na Dála. I thank the Minister of State for coming out to my constituency and visiting some of the service users in the Irish Wheelchair Association, IWA, and the Central Remedial Clinic, CRC, and for the work she has done since in her role. I met many families living with constant uncertainty about what will happen to their sons and daughters. I met a lot of them personally in their kitchens. Looking into the eyes of those parents, you could see they feel this needs to be looked at. I understand why this is 100%. I was speaking to some of them during the week. When I rang them, they were so concerned about their children, which every parent would be, that they needed to come back to me once they processed their thoughts. I want to put some of them on the record of the House. I thank the members of the Before We Die campaign and the parents who have been in regular contact with me, including Nora, Una, Bernadette, Caroline, Lynn, Candi, Tony, Suzanne, JJ, Mary and Helen. There are many more such people across the country and they all face the same fear.

The current system is incredibly fragmented. I know the Minister of State is working on this issue now, but it is an exhausting process for these parents to navigate. I was speaking to Candi, who is a full-time carer for her daughter. She has shared her experience with me and has highlighted the need for housing that provides continuity, stability and rightful supports so that people with intellectual disabilities can live fulfilling lives. She also spoke about the additional pressures faced by many family carers, particularly single mothers, and the physical demands of caring, including manual handling and the impact on their health. There is an enormous strain on parents already providing care around the clock. Families feel they are under pressure. They need a plan and they need certainty. I do believe that the Minister of State will give that to them. I look forward to her announcing this plan and to welcoming that announcement. The families deserve to know that their children will be supported, not only at a time of crisis but throughout their lives.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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I thank the Social Democrats for bringing forward this motion and allowing me the opportunity to speak in support of the Before We Die campaign. This is a group of people I have had the pleasure to get to know over the last number of months. They are a group of people asking one simple question, which is what happens to their sons or daughters when they are no longer there to care for them. It is a question those families are raising and that my own family and many other families across the country are asking as well. I acknowledge the work of Tony Murray and Maria Moran in my own constituency who, along with the wider campaign in Cork and elsewhere in the country, have met a number of Ministers and the Minister of State.

Today, I am publishing a compilation of the targeted parliamentary questions I have submitted on behalf of the campaign and individual families. The answers confirm what these families have been telling us. Nearly half of the primary carers of adults awaiting a residential place are aged 60 or over. The State’s own review found that we need at least 1,900 additional residential places. This is not a hidden problem. It is one that is going to happen whether we plan for it or not. It is also clear that while day services are important, there is very little transparency in respect of how requests for residential care are processed between the different day services, the HSE disability integrated healthcare area teams and the need at local authority level.

I am asking for two things today, which I think could be done immediately. First, I ask for a dedicated housing officer to be established in every local authority, seconded from and linked to the HSE, to finally bring together housing and health so families do not have to negotiate that. Second, I am asking for a guaranteed forward plan, triggered automatically when the carer of a person with an intellectual disability turns 65. This would mean that families get certainty and a progressive plan, not a crisis response. People have spoken to me about this. They have said that they often do not necessarily have an immediate need for a place, but they do have an immediate need for a plan for what will happen to their children.

Catherine Ardagh (Dublin South Central, Fianna Fail)
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I thank the Social Democrats for bringing forward this motion today. I thank the Before We Die campaign for leading this initiative. I am grateful to Lorraine Doyle, from Dublin South-Central, for having spoken to me. I met her in relation to the campaign.

From my own experience, I know just how much energy it takes to advocate for someone you love. Believe me when I say that as a public representative it is much easier to advocate for people who you are not related to or do not have a vested interest in. I know this from the experience of fighting for services for my own child. It takes huge strength as a family to advocate for your loved one. It is not easily done. I thank everyone for the huge amount of work and advocacy they have put into fighting for their family members.

I spoke before about my son having level 3 autism, with high-support needs. He will, most likely, need a residential place in the future. This is not something I have considered as much as the parents in this campaign, so this is why I am so grateful for all the work and advocacy they are putting in. Like every parent, I want my son to have the opportunity to live in his own community surrounded by people and places he knows. None of us wants to be left wondering what will happen when we are no longer there to care for our children.

I know the Minister, Deputy Foley, and the Minister of State, Deputy Higgins, have been engaged with stakeholders and colleagues across Government. A huge amount of work has been done on this issue and new initiatives are coming down the pipeline. What is happening is really positive, but this is only because of the advocacy work the parents in this group have done. Families are sending us a very clear message via this motion from the Social Democrats. They need to see urgency.

Too many people are left teetering on the edge of an emergency placement and this creates enormous trauma for individuals, their families and their wider circles. We have to move away, as my colleague has said, from a system that reacts to a crisis to one that plans ahead. I thank the Social Democrats again and I hope we can match the determination of these families with the urgency they deserve.

Emer Higgins (Dublin Mid West, Fine Gael)
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I thank all Deputies for their passionate contributions on what is a very important topic. The issues highlighted are very important but we all share a common objective of ensuring people with disabilities receive timely and appropriate specialist services and placements when they need them. While there may be different views on the measures needed to achieve that objective, ultimately we are all seeking better outcomes for people with disabilities. As the Minister, Deputy Foley, outlined, substantial work is already under way to improve services, build capacity and ensure people can access the supports they need.

As the Minister of State with special responsibility for disability, I am determined to work across Government to make that happen. Just last week the Tánaiste and I met members of the Before We Die campaign. I welcome them here and commend them on their advocacy and the detailed research they have collected, collated and presented. Most importantly, I thank them for their practical suggestions, which I look forward to working with them on. I have also met members of Remember Us alongside Deputy Boland. Parents in both groups but also right across the country know better than any of us in this Chamber how complex an area it is. They know we must work together across Government to meet growing demand for the required services because we require action, and action across a range of interconnected areas, many of which the Minister touched on earlier.

Ultimately, we need to be able to deliver timely and appropriate data and that needs to be used to help build timely and appropriate responses. This means understanding outcomes are achieved for people who use services and it means ensuring those services are delivered in a safe, high-quality and person-centred way. We can only achieve that with the right people and with access to the right housing needs. Addressing workplaces challenges, including the recruitment and retention of a strong workforce, and having the right regulatory environment for the sector in place is key. So too is access to appropriate and adequate availability of housing. In that regard, I echo the Minister’s welcome of the circular from this week to local authorities on housing development action plans. Those plans will deliver more appropriate accommodation solutions for people with complex disabilities in local authorities across the country. It is a really positive step and follows a significant amount of cross-sectoral work, which was driven by the Taoiseach and Ministers at the special Cabinet committee on disability. I recently met the director of housing in Mayo County Council and with the access officer in Donegal County Council. I would like to recognise the local authorities that are leading the way on this. The introduction of new plans and targets will focus each and every local authority so they will give this the priority it needs. To support families with adult children with intellectual disabilities, and indeed families of children with all disabilities, the HSE is putting in place housing co-ordinators to develop housing opportunities together with approved housing bodies, service providers and local authority housing teams. That is the kind of interagency co-operation Deputy Toole called for and I confirm it is happening. The HSE is also establishing residential planning and review teams to enable us to better plan our responses to residential needs and to ensure placements - especially those where people are placed outside their county, which many Deputies referred to – are reviewed regularly. It will also help us deliver a system that plans ahead better. This year we are, under a new initiative, delivering planned residential placements as well as emergency placements. We need to build on the number of planned residential places delivered this year and I will be working with the Minister to fight for additional budget to deliver additional planned placements next year.

As the Minister outlined, a range of policy and strategic responses are currently being developed to support further improvements across disability services and many of those are being developed in a cross-Department manner. The key now is implementation. We want to deliver these improvements at the best pace and we want to deliver them to the highest standard possible. That requires both human and financial resources, which is something we are working on. Behind all this are the people who are making those services work every day and I pay tribute to the contribution of staff up and down the country in the HSE, section 38s, section 39s and private providers who are supporting people in this situation. It is also important to recognise the absolutely invaluable contribution of families and the natural support networks people have. Most importantly, we need to ensure the voice of the person with a disability remains at the centre of everything we do. As we look to the future that means continuing to build services that provide greater choice, greater flexibility and more individualised responses while also ensuring those services remains sustainable and make the best use of available resources. Achieving that balance will be really important. It is a big challenge but the most important thing we need to do to meet that challenge is to plan ahead.

To support this, the Government has continued to invest significantly in specialist disability services over recent years. We received a 20% increase in funding this year compared with last year. Specialist disability residential services represents the largest areas of HSE disability spend and accounted for almost 60% of the total budget. This year €65 million has been allocated to disability residential services to support new developments. This includes €40 million in funding to provide approximately 199 new residential responses and 152 new residential placements comprising 72 planned placements and 81 priority 1 placements to meet urgent need, as outlined in the HSE national service plan. Importantly, that service plan places increased emphasis on longer-term planning for residential placements with strengthened operational processes being put in place to respond to the current high demand. Funding will also be provided to further support the HSE’s under-65 programme, as mentioned by Deputy Wall and others, and further transitions from congregated settings. Since 2020 additional funding provided to the HSE has supported the creation of over 1,000 additional new priority 1 residential places for people with a disability. These placements largely support people moving from their family home to residential services and are in addition to transitions from congregated settings. Between 2022 and 2024 €52.4 million of CAS was provided by the Department of housing to deliver 280 units of housing for disabled people.

In addition to supporting residential services this year’s budget also provides funding for the provision and expansion of a variety of services to support people to live in their community, including in local homes. This includes €25 million in new development funding for respite services, €44.3 million for day services and €12.1 million to support home support and personal assistance services, as mentioned here. Deputy Sherlock mentioned the challenges being experienced by some families with assisted decision-making. I confirm we are bringing forward the planned review of the Assisted Decision-Making (Capacity) Act and look forward to engaging with families and people with disabilities on that. Work is also under way to ensure the support for future development of disability services in terms of a multi-annual strategy for disability capital. This will allow a more strategic approach to disability capital investment, especially in light of the recent national development plan review. It will also allow a potential investment in disability capital for residential, respite, day services and assessments in multidisciplinary teams of up to €278 million between now and 2030.

Alongside this work, and as referenced by many contributors, the Department is also developing an updated capacity review for specialist disability services which will project demand, need profile and required resourcing across key service areas up to 2040. It is expected to be completed by the end of this year. This updated review will provide an important evidence base for future project demand, need profile and resourcing and will allow us to plan better. However, while planning for future services and supports is essential we know meeting the needs of people with disabilities requires action now and a much broader, whole-of-government response.

In recognition of the cross-departmental nature of the supports required by people with disabilities, the Department of Children, Disability and Equality has published the National Human Rights Strategy for Disabled People 2025-2030, as co-designed by people with disabilities. The implementation and monitoring group on it, which holds all of us Ministers to account, has representatives of disabled people and their DPOs. Collaborative approaches are needed and they are going to be central to meeting the challenges ahead and delivering better outcomes for disabled people and their families. Today's discussion has highlighted both the scale of the challenges that remain but also some of the progress that is being made. Our focus now needs to ensure that we continue to invest in services, grow our workforce and plan for future demand, and work across Government to remove barriers for people with disabilities and provide better supports for families who are caring for their loved ones.

Darren O'Rourke (Meath East, Sinn Fein)
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We will go back to the Social Democrats to conclude the debate. I call an Teachta Farrelly.

Aidan Farrelly (Kildare North, Social Democrats)
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I thank the Minister of State for being here. Like my friends, I commend Deputy Quaide on his sincere work on this over recent months. I also welcome most warmly those who are here in the Gallery who for some warped reason have had to tirelessly work and campaign for so long for what is such a basic entitlement.

I am really disappointed because today was not a day for either the Minister of State or the Minister, Deputy Foley, to talk to us about strategies, policies and all the great potential work that is happening. Today was a day to cohesively, all of us together, have a conversation about how poorly people with disabilities are served by the State. Otherwise, we would not have thousands of people fighting. Both speeches have missed the mark on this. That is not a political point I am trying to score. That is me being quite genuine here. There are many great things that are happening. This is not an area where we should be trying to say all is okay because it is not.

Emer Higgins (Dublin Mid West, Fine Gael)
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I am not saying that.

Aidan Farrelly (Kildare North, Social Democrats)
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Neither should we be saying that the course that is set out and laid out will meet the needs because it will not. It is as simple as that. I believe today could have been an opportunity for us to come together, but it is actually a day that will empower the Before We Die campaign to work even harder, grow in momentum and somehow find even further resolve and determination. I do not think that it will in any way give people hope of a brighter or more optimistic day because the evidence shows us that the policy has successively failed those living with disabilities.

I do not have a lot of time but we really need to emphasise, having worked in disability services and residential settings for so many years, that the ideology of relying on small private institutions is one of the corner-stones of this abject failure, when their sole responsibility is to make profit off those who live in these cold, clinical, isolated settings in the middle of nowhere, in rural communities, where they do not know anybody or anything. Quite often, the staff are agency reliant and they come and go. This is going to have a catastrophic effect. We know it now but I am telling the Minister of State that in years to come, we are going to know it even more. Those organisations we have grown up with that have been the corner-stone of our community are becoming so difficult to run because the funding levels are so low, yet there are these one- or two-unit companies just focused on running a private enterprise. It is not going to work. The Minister of State mentioned those 1,000 beds with regard to the HSE. We have to be sincere. They are not 1,000 HSE settings.

Darren O'Rourke (Meath East, Sinn Fein)
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I thank the Deputy.

Aidan Farrelly (Kildare North, Social Democrats)
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Is my time up? I apologise.

Darren O'Rourke (Meath East, Sinn Fein)
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I call Deputy Cummins.

Jen Cummins (Dublin South Central, Social Democrats)
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I thank and congratulate my colleague, Deputy Quaide, for the work he has done on this topic. Since he was elected to Dáil Éireann, he has been relentless in getting information and making sure that people who are vulnerable are represented in this Chamber. He has done so well to get this prepared and has worked so well with the Before We Die campaign.

The numbers have already been stated. There are 2,300 adults with an intellectual disability living with their parents who are aged over 70. Of those, 500 are living with parents who are over 80 and then there are people living with parents who are over 90. All of us who have spoken today have talked about the fact it is heartbreaking that any parent would have to say, "I hope I die before my child because I do not know what is going to happen to them". This is 2026. It is an utter disgrace that anybody would have to feel they are pushed to that limit and that is how they would view the situation. We have let them down so badly.

I want to praise the Before We Die campaign. Those people have had to come into this House and to the Seanad to tell personal stories and private things. They should not have had to do that. They should not have to do that. The structure should be there. Their children are adults, but they are their children. I have adult children. I still call them my children. The fact of the matter is we should have a stepping stone in this country for them when they leave school to say this is their employment, this is their education and this is what they want to do, and here are their friends and family and this is their neighbourhood. They need a choice in that. They need options but they are not freely available. Everything has to be a fight. All those things are set out in the UN conventions. There are protocols, but there is basic decency that we need to be providing in this country for people with disabilities. I am very happy and quite relieved that the Government is not opposing this motion we have put forward.

As the previous speaker, Deputy Farrelly, said, it is important this is not seen as a political point-scoring situation. This affects everybody in this Chamber and outside this Chamber. This is a human decency issue. We need to be able to move that forward and work together. We will push the Minister of State. She should please accept our pushing. We are doing it in a respectful way, but she should please accept it. If we do not move along and have this issue sorted, and if we do not have proper dignity and not have people coming here and sharing their private, personal stories, there will be a State apology. I will say that again - there will be a State apology about this issue and how we institutionalise people with intellectual disabilities. We need to get this right. We will keep pushing the Minister of State. We hope she will listen and do all in her power.

Liam Quaide (Cork East, Social Democrats)
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I came here today in a genuine spirit of constructive engagement with Government. I have no interest in reducing this crisis to party politics, but I have to say the response of the Minister, Deputy Foley, and that of the Minister of State, to this motion has left me utterly deflated. I have no doubt that sentiment will be shared by many people who have tuned in today who are counting on Government to take comprehensive and decisive action on this crisis. Out of a ten-minute statement, the Minister, Deputy Foley, spent eight minutes on broad statements, aspirations from Government, future strategies and general concern. She only engaged with the actual substance of this motion in the final couple of minutes, and I did not detect any engagement with the motion on the Minister of State's part. That is exactly the problem families are facing; generalities instead of commitments, process instead of urgency and strategy instead of action.

This motion is about people with intellectual disabilities living far from home, parents in their 70s, 80s and 90s being terrified about what happens when they are gone and families being left in a state of constant worry and stress because successive Governments have failed to plan. What we needed today was a reckoning with that failure and leadership in addressing it. What we got instead was a rehearsal of perceived Government achievements that are not being felt by families on the ground and more vague gesturing towards future strategies. I do not say that lightly. There was no clear commitment to a national plan for people living many miles from home. The contention that the HSE does its best to offer placements close to a person’s community, in line with his or her will and preference, could not be more detached from reality. There was no real answer on the growth of private provision. We know that the proportion of services being provided by private operators is increasing significantly year on year and that is hugely problematic. Families have waited long enough. They do not need another promise that a strategy may emerge at some point in the future. They need a Government willing to face the scale of the crisis now.

There was a passing reference to working towards multi-annual funding in the Minister's response. Our non-profit disability providers are unanimous in their message to us in the Oireachtas Joint Committee on Disability Matters. They cannot develop services and they cannot plan for the future under the current year-on-year model. We have drifted into an expensive crisis-led model. The proportion of residential placements provided by for-profit companies has approximately doubled from around 7% in 2022 to over 15% in the latest figures. That did not happen because of a clear rights-based strategy. It happened because the State failed to build enough planned public and not-for-profit capacity.

An example shared by the Muiríosa Foundation captures the absurdity of the current system. The Muiríosa Foundation is a respected not-for-profit provider operating across a wide geographical area that includes Laois, Offaly, Westmeath, Meath, Longford, Kildare, Tipperary and Kilkenny.

Its CEO, Siobhán Bryan, told the Oireachtas Committee on Disability Matters in February that the Muiríosa Foundation was reliant on the private rental market for 46 of its 142 residential properties. It may spend tens of thousands of euro bringing its properties up to HIQA standards, and then potentially lose all of that investment if a landlord decides to sell. This is the predicament of many other service providers. This is one of the reasons service providers need multi-annual funding. Not only is there an immense human cost to the current fragmented, reactive system where residents may lose their home at the whim of a landlord, but the system makes no financial sense either. Meanwhile, for-profit companies are in a position to build up substantial property portfolios while long-standing not-for-profit providers are left trying to patch services together year on year. We need to see a full plan from the Government, with timelines, funding, accountability and a clear path away from crisis-led provision.

It is important to say that this motion responds to one crisis, that of adults with an intellectual disability, often living with ageing parents, with no secure plan for the future. Today we are asking Government to face that crisis robustly, not with another strategy in the distance or soothing rhetoric about how great disabled people and their families are, but with the urgency, seriousness and leadership that families have been waiting years to see.