I thank the Senators for the invitation to speak here today. I am very pleased to have the opportunity to outline my key priorities as Minister of State for disability.

It is important, first and foremost, to recognise that supporting people with disabilities is a shared responsibility. It is one that extends across all of society and, most importantly, to every level of government, because disability is not abstract; it is lived every day. For many people, engaging with disability services is not a temporary thing, but often something that continues across childhood, adulthood and later life. Census 2022, the most recent census, highlighted the scale of these issues in everyday life, with over 22% of the population - approximately 1.1 million people - reporting a long-lasting condition or difficulty. For approximately 8% of the population or 407,000 people, these conditions have a significant impact on daily life. That is why it is so important that Government and public services work closely together.

Disability shows up in ordinary life, often in ways that are small but deeply felt, whether it is the parent advocating, explaining and pushing, not for something extraordinary but simply for their child to be able to belong; the young person who wants independence and is bravely working out how to balance support with freedom; the person planning a journey, checking access, timing and reliability, and hoping it all comes together on the day; the carer juggling appointments, phone calls and forms while still trying to show up for work, for their family and for themselves; the person who wants to take part in their community, to maintain friendships and to feel truly included; the person who wants to work, contribute and be valued, and who knows that opportunity depends as much on flexibility and understanding as it often does on ability; or the family celebrating small wins that other families might overlook, such as a good day at school, a successful appointment or an accessible bus or train actually showing up on time.

When you look at all of this together, what it shows is something very clear - disability is about people trying to live their lives, to belong, to contribute, to stay connected and to feel supported along the way - and what has become very clear is that disability cannot be addressed in silos, because people do not live in silos. A child does not experience education separately from transport, a disabled adult does not experience work separately from accessibility and a family carer does not experience health services separately from housing, income or community. Life arrives all at once and we need to be able to respond to that.

For a long time, disability policy was approached through a narrow lens. What feels different now is the growing acknowledgement that disability must be treated as a shared, cross-government responsibility because that is a more accurate reflection of how life actually works for us all.

Last September, the Government launched its first national human rights strategy for disabled people as part of Ireland's commitments under the UN Convention on the Rights of Persons with Disabilities, which we ratified in 2018. That strategy sets out a five-year roadmap of how we will turn commitments into practical improvements that make a real difference in people's everyday lives.

Delivery is supported through rolling action plans, updated every two years, which set out clear actions and responsibilities across Departments. Progress is overseen through a dedicated monitoring and delivery committee, that, importantly, includes disabled persons' organisations, ensuring progress is tracked and helping them to keep us accountable.

The Taoiseach chairs the Cabinet committee on disability and we have also got the new disability unit in the Department of the Taoiseach. All of this helps drive cross-government collaboration and ensure that the commitments set out in our national human rights strategy translate into real improvements in people's lives.

Within my Department, a new team has been set up to develop a new vision and reform strategy for disability services out to 2030, and that will help to ensure that we deliver on our commitments set out in the programme for Government. This work is about further developing person-centred and individualised models of services and moving even closer towards a human-rights based vision of social care supports for disabled people, in line with our commitments under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. Close collaboration with stakeholders across the sector will be crucial to this work and we expect to see tangible outcomes by the end of the year.

In the programme for Government, we committed to a step change in disability service provision. To deliver on that, this year's budget saw a funding increase of €628 million over and above last year. That was an increase of almost 20%. It follows significant year-on-year funding increases in recent years, with an overall increase of €1.85 billion, or 91%, since 2020. The additional funding includes a significant uplift of €478 million for the existing level of service provision, which will address sectoral funding pressures such as the increased cost of service provision, pay cost pressures, capacity limitations and service provider sustainability. In addition, €150 million is provided to fund service expansion in residential and respite services, day service provision, home support, personal assistance and children's services. It will also support continued strong recruitment of in the region of 1,000 staff.

While I fully acknowledge that there is still much more to do across the sector, it is important that we recognise the progress that has been made. If I may, I would like to briefly touch on some of the key recent developments, alongside the policy areas, currently receiving attention this year.

The Government, together with the HSE, recognises that demand for residential services is extremely high. That is an issue that has been particularly evident in recent weeks. Anybody working in their community will have come across this issue time and again. In response, the HSE is actively working with agencies to explore all feasible options to respond to this need in line with the funding available. Some €65 million has been allocated to disability residential services in 2026 for new developments. That includes €40 million to be provided for in the region of 199 residential responses, including 152 newly created residential placements, as outlined in the HSE's national services plan. Funding will also support new residents in existing placements that have become vacant and require enhancement and, in limited circumstances, placements in nursing home settings.

It is equally important that our response is not limited to reacting to immediate pressures. For that reason, the 2026 national service plan signals a shift towards a more proactive and responsive model of service provision, including the development of 72 new planned residential placements. This year, with allocated funding in place, the HSE has commenced work to establish residential placement planning and review teams within each regional health area. The purpose of these teams is to ensure that individuals are appropriately assessed in advance of placement in residential services and that placements are reviewed in a timely manner and with due regard to the duration of placement, quality of care, and evolving support needs. In parallel, HSE disability programme leads are developing a procurement framework for residential placements with for-profit providers. This framework will place a primary focus on the purchasing of placements on a group basis, with the objective of strengthening the HSE's capacity to negotiate more cost-effective and sustainable arrangements. The Department is also undertaking research and advancing policy development throughout 2026, with a view to establishing a new policy framework for specialist residential services.

As Senators will be aware, respite services are an incredibly important support for families. We know that the availability of respite can prevent carer burnout, provide opportunities to connect and socialise, and can help to delay or maybe even prevent a move to a full-time residential setting. There are currently a range of developments under way. The additional €25 million in new development funding provided for in this year's budget has enabled the HSE to plan for a significant expansion of respite services. A number of initiatives are under way, which are expected to deliver approximately 10,000 additional overnight respite sessions and 25,000 additional day respite sessions this year. In parallel, the Department is commencing work on the development of a dedicated respite services policy to help establish a robust and coherent framework to guide future expansion, investment and sustainability in respite services.

Proving the assessment of need process is a priority for this Government and significant work is under way to deliver a range of both legislative and non-legislative reforms. As part of this work, the Department will shortly finalise the disability (amendment) Bill 2026, which will standardise and streamline key aspects of the assessment of need process. I thank Members who are involved in the disability matters committee, which I know has looked at this thoroughly through pre-legislative scrutiny.

Importantly, these legislative changes will not remove any existing rights for parents to apply for assessment of need on behalf of a child and nor will they alter the statutory six-month timeline set out in the Disability Act. The reforms are intended to build on the momentum already achieved, as reflected in the 43% increase in the number of completed applications in 2025 compared with 2024 and we need to continue that. The HSE has made real progress in reducing CDNT waiting lists, with preliminary figures indicating that the number of children awaiting an initial contact with the CDNT team has reduced from 16,522 in 2023 to 9,248 at the end of January this year. Despite sustained pressures, waiting lists were reduced by 28% last year and progress is being made on the recruitment of staff to our CDNT teams with the HSE reporting a 28% increase in staffing levels nationwide between October 2023 and 2025. That equates to an additional 448 whole-time equivalents, including 321 health and social care professionals. I am conscious of time.

Carry on.

I thank the Cathaoirleach; I appreciate that. Other important supports funded by my Department include home support and personal assistance services. Approximately 7,000 people with disabilities in Ireland currently receive home support, including both adults and children with a wide range of needs, while almost 3,000 disabled adults receive personal assistance services. These services play a key role in supporting independence and enabling people to live in their own communities. That is why this year's budget provided €5 million to deliver over 150,000 additional home support hours and personal assistance hours this year.

This year's budget also saw a substantial investment of €15 million to increase the rates paid for delivering home support and personal assistance services. This will help providers recruit and retain staff. It will help build a sustainable workforce and it will deliver on a programme for Government commitment to align disability services rates with those paid for supports in other sectors.

Looking ahead, the Department is advancing the development of a policy framework to support community living. This will bring together key supports such as home support, personal assistance and personalised budgets to a clearer and more consistent approach for the future.

Sorry to interrupt. I ask for silence in the Gallery while the Minister of State is speaking.

I thought the Cathaoirleach was going to give out to me.

No, I would never do that.

Turning now to legislation, the Department is currently undertaking a review of the Disability Act. This will examine and update the statutory framework that underpins co-ordinated action across Government and disability issues with the aim of strengthening delivery mechanisms and supporting a more effective whole-of-government approach. As part of this work, the review will also progress the programme for Government commitment to place an autism strategy on a statutory footing. In addition, I have committed to commencing a review of the Assisted Decision-Making (Capacity) Act later this year. This will be a comprehensive review, considering all aspects of the Act. Crucially, it will be informed by the voices and lived experiences of those directly affected by its provisions, as well as wider society. Alongside the legislative agenda, we are also looking at a step change in funding for disability services. We are investing heavily in our workforce and are building on progress from last year. This year we will fund an additional 976 whole-time equivalents and 74 whole-time equivalents through agency conversion. We will have a total growth of over 1,000 whole-time equivalents in the HSE and will bring the disability workforce to over 23,600 by the end of the year.

I really appreciate the Cathaoirleach allowing me to go over my allotted time. I hope I gave a small indication of the huge amount of work being done in the Department by my committed officials, as well as in the HSE, in terms of the reforms that are being introduced and the efforts under way to transform the really significant uplift in budget we got this year into improved and expanded services and, most importantly, improved outcomes for people with disabilities across Ireland.

I thank the Minister of State for coming to the Chamber to discuss this very important topic. I very much recognise the fact that the latest census suggests that we have about 1.1 million people across Ireland currently living with some form of a disability. I am very conscious of the fact that disability comes in many guises. It can be somebody who suffers from a mild inconvenience to somebody who suffers from a profound disability, which has a direct impact in all aspects on so many people, be it their family, their loved ones, the workforce they are a part of or the fact that they cannot seek employment in the workforce. As the first speaker in this debate, it is important for me to recognise the fact that we are talking about a vast range of people and a vast range of people who they interact with on a daily basis as well.

I recognise the fact that we have had in the last budget, for 2026, a €634 million increase. This speaks to the fact that this is an issue that was of profound significance in the most recent general election. So many people spoke to me when I was out on doors in Wexford about the impact on their families of interacting with the State services and the difficulties that many people are having in accessing those State services. I definitely recognise the increase in over 1,000 workers available for recruitment to positions in the HSE this year, to make sure that people can get access to the services because that is so important. In my own area in Wexford, there are difficulties with accessing CDNT services. In this Chamber I previously spoke about the difficulties in accessing speech and language therapy for children in particular, in the New Ross area. I recognise that there has been some recruitment in that area, in New Ross, but we need more supports put into that. It is not acceptable in this day and age that children are waiting four to five years for an assessment for speech and language therapy, particularly when having access to that support is such a significant step in all of their further life. In general terms, I recognise something the really important roll-out of the education therapy. I actually attended St. Patrick's Special School, Enniscorthy, with the Minister of State's predecessor, Senator Anne Rabbitte, when a pilot was rolled out to supply speech and language therapists, physiotherapists and occupational therapists directly into a special school. The point made to the parents that day was that they were bringing their children to school or they were being collected and brought to school by a bus. Then, within an hour of the day starting in school, they were leaving to attend an appointment with a physiotherapist, a speech and language therapist or an occupational therapist and then they were coming back and going somewhere else. The pilot scheme made a lot of sense and it worked in Enniscorthy. We have to roll that out further. I know it has been made available to the first round of schools but that model has to be more widespread. For budget 2027, I would encourage the Minister of State to seek further supports to enable that service to be rolled out beyond the initial set of schools that it was for. Many children are being taken out of the school, go to their appointment and are brought back to school. It really is better to have it all under the one roof. Ultimately, I would like to see that rolled out to all the special education classes that we have opening across the country in the new schools as we see most recently as of yesterday.

I want to speak for a moment about something that is very significant. I attended the Fine Gael conference on disability in Galway. This was an opportunity for many of the various stakeholders and people who live with a disability on a daily basis to speak directly to our party about what matters most to them. I acknowledge the Minister of State attended the conference as well and would have heard this point directly. One of the big things we spoke about that day was the barriers that exist for people with disabilities to get access to employment. There is a greater need for supports through the Department of enterprise and through the Minister of State's role at the Cabinet table to ensure that those who wish to take up a job are able to do so. Accommodations need to be made to recognise that they do have a disability but they want to be part of the workforce, to be able to work and take up opportunities. The real lived experience of people having to attend interviews in places perhaps where it is not possible to get up the stairs and there is no lift, was one of the key stories told that day. The person could not even get to the interview because it was not in a suitable location for them.

Those are the key issues I am hearing about in my clinics in Wexford when people talk about disability services as a whole: access; making sure the supports are widely available; and the fact different parts of the country have different levels of service, which should never be the case.

I want to also highlight the work that has started on the abolition of the carer's means test. Many people have told me they feel they have no choice but to apply for carer's allowance but are ruled out of it by circumstances beyond their control. I recognise the last budget saw a significant change in the carer's means test, which will expand it further than ever before, but we have to get there faster. The Minister of State has a unique opportunity in budget 2027 to put resources into abolishing the carer's means test or taking a significant step in that direction. These are people who may have never applied for any other social protection payment and find, through different circumstances, they have to apply to become a carer for a loved one or significant other but are outside the threshold. While work has been done, there is a significant opportunity to do more.

For the first time ever, caring is a recognised contribution towards getting a State pension. It is very significant for the State to recognise that if someone has taken time off to care for a child or loved one, that time was work and therefore qualifies for a State pension. That is a welcome change. I welcome the work done but there is far more to be done. I know the Minister of State will lead on this. The fact we have a Cabinet sub-committee and a Cabinet-level Minister of State focused on this area is significant. I look forward to continuing to work with her on this into the future.

Cuirim fáilte roimh an Aire Stáit chuig an Teach. I am always struck by the statements Ministers read out when they come in here. They are full of facts and figures but, in their quantitative way, they do not really describe the objective circumstances of living for disabled citizens. Here are some facts and figures: it was 269 m long and 28.2 m wide, could travel at a speed of 24 knots, cost €7.5 billion in today's money and burned 600 tonnes of coal per day. Fantastic - the figures are like Top Trumps. It sank in two hours and 40 minutes. It was the Titanic. We are on the Titanic as a community. It started to sink significantly during the austerity years. Notwithstanding the ethical and intellectual mistakes made during the Celtic tiger, austerity was a time when successive Governments' enthusiasm for inflicting pain on the most vulnerable citizens in Irish society was seen as a virtue. We are living the dream.

I was at the disability matters committee meeting this morning. It was an extraordinary meeting, involving some members of the Minister of State's party. No less than three parents and carers at the meeting expressed on the public record that they wished their children would predecease them. Think about that. We live in a society where we have parents who wish their children would die rather than face the prospect of what will happen to them when the parents die. There are 50,000 disabled men and women over the age of 25 living with elderly parents because there is no other provision for them.

I could tell the Minister of State of the despair, trauma and hurt in that community. Not only do you have to grieve on the diagnosis of a disability for you child, but then you have to come to terms with the condition, whether it be an intellectual or physical disability or, in the case of my son, a neuromuscular disease. You have to cope with that but then you have to fight for every item the Minister of State listed. She mentioned respite. I have never had respite in 23 years. Myself and my wife have never gone out together on our own in 23 years. One of us has to be at home at all times with my son. I will not be here for the homeless statements tonight because I have to go home and mind my son. That is the reality: a society where parents would wish their children dead. That is on the record from three parents this morning.

This is the Titanic but I do not get that sense when the National Disability Authority comes into the committee and it is all facts and figures. Everything is fine. "Everything is Awesome". We had HIQA come in and celebrate the "Time to Move On" initiative, removing disabled citizens from congregated settings. One disabled citizen who was decongregated went to a lady who wrote to me. She is 89, a cancer survivor, and her 57-year-old daughter, who is a wheelchair user, was returned to her, decongregated - hip, hip, hooray. This 89-year-old woman, a cancer survivor, has to lift her 57-year-old daughter in and out of bed and manage her behaviour because she is agitated after being taken out of the congregated setting she was used to for all her adult life. Her husband is 93 and uses a rollator. The 89-year-old lady asked the HSE for help and the HSE said one of them has to die and the other has to have a diagnosis of a terminal illness before it can provide supports. That is the experience of our community. That is what it is to be disabled in Ireland today.

In the context of carers and parents who fear for the future and for what will happen after they die, one lady in Cork brought her child in extremis to the emergency department in Cork. The HSE wrote to her and told her to note that as a parent she is financially responsible for her child until they are 18. She is responsible for them financially and to accommodate them and care for them. If your child is in full-time education, you are responsible for them until they are 23 and if your child is disabled, you are responsible for them indefinitely. The State has no role in supporting disabled citizens to live dignified, autonomous, independent lives. There are 55,000 of them at home with elderly parents. What a disgrace. I get no sense of that in these statements. That letter to that woman has not been withdrawn. I am told there is no legal basis for that assertion by the HSE but it reveals a toxic culture within the care providers that see families and disabled citizens as recipients of charity and have a "You'll take what you're given" mentality.

We have 29,000 children waiting for an initial psychology assessment, 25,000 children waiting for an occupational therapy assessment and 21,000 waiting for an initial speech and language therapy appointment, which is an increase of 37%. It is a system that is failing and sinking. It is one where rearranging the deckchairs will make no difference to the outcome.

Speaking of letters, I wrote to the Minister of State and the Minister, Deputy Foley, during the Easter break and asked for a meeting to see if they would support my disability rights Bill. I do not think I have received even an acknowledgement of that. I checked before I came up here.

In relation to the Disability Act the Minister of State intends to review, the disability matters committee carried out pre-legislative scrutiny on that. The Minister of State says it does not dilute the request for an assessment of need, which is the only right disabled citizens have in Ireland. However, it absolutely does dilute the services and supports set out because the Minister of State proposes to put in a system of triage where a grade 7 administrator in the HSE will decide what my child is entitled to or not entitled to.

The Minister of State is shaking her head. She was not at all of those meetings. I was, and I can tell her that is what is there. I speak from lived experience. I am telling the Minister of State that the Government failed in its wording in the care referendum to give constitutional expression to the idea that the family was the primary, if not exclusive, agent responsible for disabled citizens’ autonomy and independence. The Government failed. Some 75% of the Irish people voted against that, the highest ever "No" vote in a referendum held in the history of the State. There will be a reckoning over this. We are coming up to the Presidency of the EU. We are outliers. We have children dying on waiting lists for surgical intervention in Children's Health Ireland. Chloe Maher died this year. Little Harvey Morrison Sherratt died for the lack of a surgical intervention that is routine in other jurisdictions, and the Minister of State tells me that everything is awesome?

This is Ireland's darkest shame, and I intend to fully bring this to the attention of our European partners. We are complete outliers in European terms. We are 50 years behind Germany and its principal law.

I thank the Senator.

We are 30 years behind England, Scotland, Wales and Northern Ireland. We should be ashamed of ourselves. I heard parents say in the Leinster House complex this morning that they wished their children would die. What kind of a society is that? The Government just does not get it. As one of the mothers said this morning, the Government needs to come out of its bubble. I have been saying this ad nauseam for the last four years. I have to go home now and be a carer with the minimum support from the State, despite its constitutional aspirations for beautiful young men like my son.

I am sorry that I am exercised by this. It is not personal to the Minister of State, but I do not get a sense of urgency from anybody. All I hear is word salad about this, that and the other but our objective circumstances of living are deteriorating on every measurable metric. I apologise to the Chair.

I know.

Just before I move on, I welcome the committee from the Fr. Sammon Centre in Monivea, who are guests of Deputy Albert Dolan. They are very welcome to this House and are in very good hands.

Cuirim fáilte roimh an Aire Stáit. I welcome the opportunity to contribute to these important statements on disability matters. At the outset, I want to be very clear. Fianna Fáil welcomes these statements, and we welcome them because they reflect a Government that recognises that supporting disabled peopled is a central priority, not an add-on or an afterthought.

Disabled people continue to face real and persistent barriers in our society, barriers in education, employment, transport, housing, healthcare and civic life. This Government acknowledges these challenges and, more importantly, is acting to address them through sustained investment, structural reform and rights-based policy.

That commitment is reflected at the highest level of the Government. An Taoiseach, Deputy Micheál Martin, established a disability unit within the Department of the Taoiseach to bring renewed focus, accountability and urgency to disability matters. This is not symbolic. It is a clear statement that disability policy must be co-ordinated, monitored and driven centrally across all Departments.

This work is rightly anchored in the National Human Rights Strategy for Disabled People 2025-2030, which is advancing the realisation of the UN Convention on the Rights of Persons with Disabilities. This strategy sets out an ambitious but necessary five-year programme to tackle the barriers that disabled people encounter in everyday life and to ensure they can live full lives of their own choosing.

Budget 2026 represents the first major step in turning that vision into a reality, and I will return to that shortly. The national human rights strategy is grounded in clear principles: dignity, autonomy, participation and equality. It moves us decisively away from a charity or deficit-based model and towards one that recognises disabled people as rights holders. The strategy commits every Department and State agency to delivery across five key pillars: inclusive education; employment; independent living and participation; health and well-being; and transport and mobility. Crucially, this is a whole-of-government approach. No single Department can deliver meaningful change in isolation.

The whole-of-government approach is evident in budget 2026, which delivers a record €3.8 billion allocation to the Department of Children, Disability and Equality for specialist disability services. This represents a 20% year-on-year increase, an unprecedented level of investment that will stabilise funding, support workforce planning and expand essential services across the country.

This funding will enable the expansion of residential care, respite services, and personal assistant and home support hours. It will support over 9,000 people in residential services, deliver thousands of additional respite nights and day services, and provide approximately 1,400 new day service places for school leavers with disabilities. Importantly, this investment also supports decongregation and independent living, ensuring more disabled people can live in their communities close to their families, friends and other supports.

Disabled children and their families have waited far too long for timely supports. Budget 2026 makes meaningful progress in this area. In health, funding is provided to recruit 150 additional staff for children’s disability network teams to address therapy waiting lists and to continue the assessment of need targeted wait list initiative, delivering approximately 6,000 clinical assessments next year. In education, the budget provides €3 billion for special education, supporting around 250,000 children with special educational needs. This includes additional speech education teachers, almost 1,700 new SNAs, up to 3,000 new special classes and special school places, and expanded school-based therapy services. For early years, increased investment in the access and inclusion model ensures more children with disabilities can fully participate in the early childhood care and education, ECCE, programme in inclusive settings.

Employment remains one of the strongest routes to independence and social inclusion. Budget 2026 strengthens supports to help disabled people access and remain in work. The wage subsidy scheme has been significantly enhanced for the first time since 2022, with increased hourly rates and expanded eligibility to include people who acquire a disability or experience severe conditions. These measures will support thousands of workers and employers. Critically, budget 2026 removed disincentives to employment. People on disability allowance or the blind pension who move into work will be able to retain the fuel allowance and the back to work family dividend is extended to more disabled people. These changes recognise that taking up work should not mean falling off a financial cliff.

The budget also strengthens disability supports across health and well-being, from mental health staffing increases to oral health, audiology services and meals on wheels.

Participation in social, cultural and sporting life is addressed through targeted funding for accessible tourism, digital inclusion, inclusive sport facilities and community-based initiatives. These investments recognise that inclusion does not end at the clinic door or at the classroom door.

Accessible transport is essential for independence. Budget 2026 continues significant capital investment, ensuring that all new transport projects follow universal design principles, while funding retrofit programmes to improve existing buses, trains and stations.

The Government also continues important legislative progress. The Assisted Decision-Making (Capacity) (Amendment) Act 2026, signed into law last month, ensures that all wards of court will have their capacity reviewed, providing clarity, legal certainty and respect for each individual.

There is still work to do. Waiting lists remain too long and workforce challenges persist, but the direction of travel is very clear. This Government is delivering on its commitments to disabled people, grounded in rights, backed by record investment and driven by accountability at the centre of this Government. The establishment of the disability unit, the delivery of budget 2026 and the implementation of the national human rights strategy together represent not just progress, but a genuine shift in how disability policy is approached in this State.

We must continue to listen to disabled people and their families, to co-design solutions and to hold ourselves accountable for delivery. This is how we build a society where disabled people are not merely supported, but empowered to live full, independent and meaningful lives.

Before we move on to the next speaker, I welcome Kieran Stokes-Ryan, who is studying government and politics at UCC and who is on work experience here with Senator Laura Harmon. I believe we have another group here as well. We may as well say "Hello" to everybody. The walking group from Dundalk who are here with Deputy McGreehan are very welcome. Some of the Minister of State, Deputy Marian Harkin's constituents are here as well. It is great to see them all. We are doing statements on disability and are joined by the Minister of State, Deputy Higgins, this afternoon.

I call Senator Pauline O'Reilly.

It is Tully.

I apologise. I do that every time.

I welcome the Minister of State. The first thing I will raise is the Before We Die campaign. Like Senator Clonan, I think this is an issue of huge concern. This campaign was established by elderly parents who were caring for adult sons and daughters in their 20s, 30s, 40s or 50s and who were concerned about what was going to happen to those sons and daughters when the parents died. It is every person's right to have the option to live independently. If people do not quite know how to go about accessing housing, it seems they are just forgotten about. It is left up to them. It is seen as their responsibility.

I have spoken to many parents whose son or daughter is on the county council housing list in their local area. When I engaged with the local authority, I was told it had houses ready to allocate to people. They do not need to be adapted if the person in question does not have a physical disability but many such people will need some sort of a care plan. That might just mean a support worker or it could mean a full-time carer. In order to allocate a house, whether from the authority's own stock or through an approved housing body, AHB, the authority needs the HSE to engage with it and to put that support plan in place, but that is not happening. When Housing for All was launched during the last Dáil term, we were assured that there would be better co-operation between local authorities and the HSE to ensure that this would happen. It is not happening on the ground. There is clear frustration on the part of the local authorities. They organise a meeting with the HSE to discuss the allocation of housing and putting a support plan in place - I am talking about my own local authority in Cavan but I am sure it is happening across the board - and then, with very little notice, the HSE does not turn up for the meeting. There is very little engagement.

I contacted the HSE in my local integrated healthcare area, Cavan-Monaghan, and asked for a breakdown of the numbers in the area. I am told there are 87 people in Cavan who are engaged as service users and who have a disability and will require housing. I am not sure if that is the full number or just the number of people the HSE knows about. I was also told there are 25 emergency cases. I assume an emergency case is a case where the parent has passed away or is no longer able to care for the person in question. That means the son or daughter with an intellectual disability, autism, a physical disability or a combination of those conditions ends up being placed in a residential setting. That could be outside the county, meaning they are not able to attend their day service, to see family and friends or to live in their own community. I forget the exact number - it could be as many as 20 - but there are also quite a number of Cavan people who have been placed in residential settings outside the county. Many of them want to come back to live in Cavan and were told at the time that this was a temporary measure and that they would be facilitated in Cavan when a place became available. However, when you query those cases, you are told these people are settled, okay and already accommodated. That is not their wish or the wish of their families.

I spoke to one man who was 79 and who was caring for his daughter, who was in her early 40s. She attends a day service. He told me he was not able for it any more. There is also a question of dignity here. This is a man caring for his daughter. While carers come in at certain times of the day to shower her or dress her, these are set times. They are not there every time she requires washing or so on. Like many other parents, he is afraid that, if something happens to him or he passes away, his daughter will not only be grieving for him but also having to get used to a new setting where she might know nobody. She might be far away from everything that is familiar. It needs to be dealt with immediately. It is not just about money. It is about different agencies working together to make sure this happens.

We also still have quite a number of people in congregated settings. I believe 2018 was the time set to move on from congregated settings. We are now eight years on from that and there are still people there.

With regard to the CDNTs, there have been improvements in their staffing levels but they are still not 100% staffed. Speech and language therapy is an issue of huge concern. There are not enough speech and language therapists. I am not even sure that the initial make-up of the teams is sufficient to deal with the increased demand and significant backlog. The Minister of State said the backlog had come down but there are still over 9,000 children on waiting lists. One mother told me that, when her daughter was about 18 months old, she realised that there was an issue with her speech. She brought her to be assessed and she was found to be autistic. She was practically non-verbal. She had about five different words. This mother was in a position to access a private speech and language therapist for her daughter. Her daughter is now 7 or 8 and speaks perfectly. This proves that, if children get the interventions they need at an early age, they can overcome many issues. A lot of children get frustrated and lash out at school or in other settings because of their inability to communicate. Speech and language therapy and finding alternative ways to communicate, whether through assistive technology or some other method, is very important. Again, that is not happening widely to ensure that children can live their best lives and cope with whatever is coming up, whether in the school setting or elsewhere.

I know primary care does not come under the Minister of State's Department but under the Department of Health. However, there has to be a connection between the two. Again, I see children waiting for years for an appointment to be seen by a physical therapist, an occupational therapist or a speech and language therapist. It is the same across the board. I am also concerned that the CDNTs seem to be in the habit of saying they have had contact with a child or that a child has had a given number of appointments when this may just have been engagement with the parents or phone calls. It is not necessarily the one-to-one therapy that the child needs. That also needs to be addressed. It is almost like they are painting a better picture than is actually the case.

While strictly speaking the cost of disability also comes under a different Department, it is a huge issue. In the budgets for last year and the year before, everybody got energy credits but there were also additional payments made to people in receipt of disability payments. We heard a lot about disability in the general election campaign of 2024 but there was nothing in the first budget introduced by the new Government for people with a disability. People with a disability say they feel they are down an average of €1,400 compared to previous years. We need to see a stable cost-of-disability payment that recognises the significant additional costs to families who have a disabled member. The Indecon research into the cost of disability showed that the difference between the costs faced by a family without a person with a disability and those for a family with such a person was huge and was only increasing as the cost of living increased.

There is an insufficient number of carers on the ground. The Minister of State has said there are going to be increased supports for carers but we do not have enough of them. We need to look at how we can get more home support carers in. One woman was in contact with me. She is a wheelchair user and has been very independent all her life but she is now getting older, has issues and needs support. She has been approved for home care hours but there is no carer available to fulfil those hours. We need to think outside the box as to how we can get more people to take on caring roles in the community.

I will share time with Senator Cosgrove. I expect her to be attending later on in the debate.

Is that agreed? Agreed.

I welcome the Minister of State to the House. I do not doubt her commitment to her brief and progressing these matters but the pace of change is too slow. Some progress has been made. It was good to hear the Minister of State mention that we cannot work in silos. That needs to apply to the Government and Departments as a whole. At the disability matters committee earlier today, we heard people's lived experiences of feeling they are being passed around the houses from pillar to post when seeking support, be it by the Minister of State's Department or housing, Transport, Heath or Social Protection. The joined-up piece is important when we speak of disability and other issues. We need to move away from managing crises in this country and in this area to solving them.

There was a lot of talk about disability during the general election. A lot of light has been shed on the area in recent years. In many ways, we have played catch-up with recent Ministers to address the scale of the crisis and how far behind we are as a country. There is no unique experience. Everyone's experience of disability can be very different. Sometimes it can be the same, but it can be very different for an individual depending on their disability, which is what we are discussing. There is a need for personalised care.

At today's meeting of the disability matters committee, numerous groups and parents spoke, including those from the Before We Die campaign. It is completely unacceptable that parents in this country are caring into their 90s for their children, care for which they should receive support and that the State should be providing. People are not registered at an early age and, therefore, are not getting early intervention from childhood onwards. Care should be for a whole life cycle. Many of us in the Chamber, as Senator Clonan often correctly reminds us, will develop or may have developed a disability. This is something that the entire population may experience during their lifetime.

The word "inhumane" was used by some witnesses at the committee. The lack of dignity was cited. One of the witnesses said she felt we are going backwards. Another said he feels they are living in a black hole. That is a very dark description and language to use for that experience. They feel they are being completely let down by the State. One area is the cost of disability. We heard from groups after the budget, including disability organisations, which said disabled people were made less well off by €1,400 by the budget. Introducing an emergency cost of disability payment as a starting point is necessary.

Regarding housing, local authorities need more resources and more planning is required for disability teams, not just in housing adaptation but how we build houses and universal design. We are way behind the curve and that has an impact on independent living.

I am struck by the disparity between regions. At the committee, we heard the average hours of personal assistance provided in Dublin can be much higher than in the south west. It is similar for home care supports. Why is there such disparity between regions? I know it comes down to staffing and recruitment, which the Minister of State is working on, but we need to improve that. We need to keep people in the country in terms of recruitment. This comes down to workforce planning. The Minister for further and higher education has a role to play. We need a whole-of-government approach as part of this.

I refer to employment. We are 20% below our European counterparts in terms of workforce participation. What can be done about that? Do we need more carrot-and-stick approaches for employers? What solutions can be put in place?

I thank the Minister of State for coming to the House. Senator Clonan is a great advocate for his son. I cannot imagine walking a day in his footsteps. I cannot imagine walking a day in Tracy Caroll's footsteps or understand what it is like, and I never claimed to know what it is like. I have a friend with two beautiful daughters and I cannot imagine what it is like walking in her shoes or those of the lady whose daughter I helped to get into a residential facility. I will never claim to understand even for a second what the lives of the people who came before the disability matters committee are like.

However, I did not hear a Minister come in here and say that everything is awesome. That was inappropriate. I have not heard a Minister say in the House that things are fantastic and great and look for a round of applause or pat on the back. What I saw was a Minister of State who told us about budget increases and what the Government is trying to do to help the situation. Senator Tully, who always speaks very passionately, mentioned that nothing happened in the last budget. We increased the budget for disability by €620 million. That is not nothing. It is not enough. Everything that we are doing is not enough, but we are trying and we have to recognise that.

Disabled people are worse off to the tune of-----

It is my time to speak. I appreciate what Senator Clonan spoke about, but now it is my time.

I will speak about something that goes right to the heart of fairness, dignity and basic human rights. Many families like Senator Clonan's have a child with profound disabilities and are trying to adapt or build a house or build an extension for that child. As mentioned, over 1.1 million people, or 22% of our population, live with long-term health conditions or disabilities. For many, adapting their home is not a luxury; it is an absolute necessity. It is the difference between independence and dependence, safety and daily risk and staying in a home or being forced into care. The State recognises this. That is why we have the housing adaptation grant. A sum of €117 million has been allocated to this to allow 13,000 older and disabled people to live independently in their homes.

In my county, Meath, about €3.3 million in housing adaptation grants was provided in 2024. About 80% of the funding came from central Government and 20% was funded by the council. Despite this investment, some families are still carrying a significant financial burden because the maximum grant available is €40,000 and it is means-tested. For many households, in particular those on modest incomes, that does not come close to covering the full cost of works, especially when major adaptations like extensions, accessible bathrooms or lifts are required. Crucially, the grant does not cover VAT on the works. I would like us to open a conversation about this.

I am dealing with a lady who sent me her bill. She will be asked to pay €76,000 in VAT alone to adapt a house for a profoundly disabled child. That is not right. Families already under pressure must pay thousands of euro simply because the works are deemed taxable. Let us be clear; this is not discretionary spending or renovation for comfort and style. This is essential work and we are taxing it. We are effectively placing a financial penalty on disability. At a time when we are supporting, and want to support, independent living, we are adding costs that make it harder. When people can remain in their homes, it reduces pressure on hospitals, nursing homes and long-term care services. That approach supports families and carers. It prevents delayed discharges and, ultimately, saves the State money. If we are serious about inclusion, dignity and fairness, it is a straightforward step. We need to remove VAT on housing adaptations for disabled people, starting with the 8% of people with profound disabilities and working from there.

I would also like to examine the number of grants available. A couple earning about €74,000 is only entitled to €12,000 towards building costs. For example, a couple who got married and bought a three-bed semi they lived in a couple of years may then have a child who is profoundly disabled. The couple wants to prepare that house for their child in the future, but €12,000 would not even get a bathroom done and there is VAT on top of that. I appreciate that we are doing amazing work on disabilities, but when it comes to children with complex needs and adjusting homes for them and their families we need to look at the grants and consider a reduced rate of VAT or no VAT rate.

The UK allows the building of ramps, the widening of passageways and walls, the adaptation of bathrooms, etc., to be VAT exempt. Other works have a VAT rate of 5%. I see this not as a benefit but a necessity, and not as generosity but justice, because no one should be taxed for trying to live safely and independently in their own home.

The Minister of State is doing an incredible job. I see it in the work she is doing. I know she totally gets this and that she is putting everything into being a Minister for people with disabilities. This is absolutely obvious to me and, I hope, everyone else, but I ask that in her conversations regarding housing adaptations for disabled people, she consider the points we have raised. People could really do with this.

I remind Members that we have until 6.10 p.m. for this debate, and that includes the ten-minute reply of the Minister of State. I therefore ask Members to be mindful of the time. I call Senator Kennelly.

We have got to organise our time if the Minister of State has ten minutes in which to respond.

I can make my contribution shorter if that is within the rules. I would like everybody to be able to contribute. It is a question of what the Chair and Members feel. It is their House, not mine. I would like to accommodate everyone.

We have four more speakers. I thank the Minister of State for accommodating them.

I thank the Minister of State and welcome her. I, too, attended the disability matters committee this morning, and the health committee, and I too was taken aback by the pain that all the individuals and advocate groups are going through. However, I recommend and testify to the work that Deputy Higgins is doing as Minister of State in her new role.

I am going to speak specifically, in three minutes flat if I can, about respite for the people of Kerry. The two ladies who spoke at the committee meeting this morning, Josephine Keane from Causeway and Jacqueline Riordan, are advocates for parents in really dire situations owing to the lack of respite. One lady in particular, Jean O'Sullivan, whom I mentioned at the meeting, is really the spiritual leader behind all the parents in these sticky situations over respite. Her son is one of those in St. Francis School, which he attends. It is on the campus of St. Mary of the Angels. He is on his way home this evening, having spent three weeks in Crumlin hospital. I wanted to keep these people in everyone's thoughts this evening.

The reason I am speaking is to highlight the ongoing and deeply concerning gaps in disability services in Kerry, particularly regarding respite provision for adults with complex needs. Families across Kerry have made it clear that the current level of support is nowhere near what is required. There are only eight HSE-provided adult respite beds across north and south Kerry, supplemented by six beds from the Kerry Parents and Friends Association. For children, the situation is even more stark, with just eight respite beds available for the entire county. These numbers simply do not reflect the need.

Parents caring for adults with severe and profound disabilities provide 24-hour care, seven days a week, often where there are significant medical and behavioural complexities. Many of these families report exhaustion, limited sleep and no capacity to work outside the home. Siblings' needs frequently become secondary, and what most consider normal family life is often impossible.

Respite is not a luxury; it is an essential support that allows families to continue caring for their loved ones at home. For the individuals themselves, respite provides opportunities to socialise, develop independence, participate in age-appropriate activities and avail of opportunities they are entitled to.

It must also be said that the extraordinary advocacy and involvement of people like Jean O'Sullivan, whom I have just mentioned, and her husband, Councillor Teddy O'Sullivan Casey in Kerry, has for far too long fallen on deaf ears. Such families have repeatedly raised the alarm. They have offered solutions and spoken from lived experience.

Looking ahead, the need is only increasing. A cohort of young adults are leaving St. Francis Special School in Beaufort, County Kerry. Michael, whom I have mentioned, is one of those. The young adults' families are facing a future with no appropriate respite options. Without intervention, most families will reach breaking point, and the State will face a growing demand for full-time residential placements and placements that could be avoided by having timely, well-designed respite supports. I have highlighted this area.

There is a clear opportunity at St. Mary of Angels. It is in Beaufort, in mid-Kerry, the most idyllic place in the country. A strategic plan is currently on the plate. Parents strongly support the creation of a centre of excellence for respite care at this location, one that can deliver specialist, age-appropriate and medically supported respite for adults with complex needs. Such a model would not interfere with existing residents or national decongregation policy and could provide a sustainable future-focused solution.

What Kerry families are asking for is very straightforward: an increase in the number of respite beds across the county, purpose-built services capable of meeting complex care needs, and a centralised specialist model that provides meaningful opportunities for adults with disabilities.

I have raised this before, even with the Tánaiste. The good news is that he is to visit Kerry, including the centre. I am looking for something that can be delivered for the families. A mother I was on to this morning is actually getting no sleep. She is getting no respite. If she does not get it, she might not be available to deliver the care her son needs.

I look forward to working with the Minister of State and I really look forward to the initiatives she underlined today, which will see €25 million and 25,000 additional day respite sessions during the course of this year. The centre down in Kerry involves an easy ask. There is an open door. If we can just work with it, we can really make life a lot easier for the families.

I thank the Minister of State for coming into the House this evening and giving us an in-depth response on where exactly things sit with her and her officials within her Department. Her response is very welcome.

The allocation in the 2020 budget has grown by approximately 90%. When I took over in 2020, the amount was €2.1 billion and today it is €3.9 billion.

The Minister of State's job is to drive policy and ensure she gets as much money into the sector as possible so the HSE can operationalise it. I fully realise she understands the frustration of Senators this evening, because sometimes operationalisation does not go far enough. There is a complete inequality around some of the REOs. I do not need to tell the Minister of State that because I see her out and about and engaging. I have 100% confidence in her and her team, and in what they are doing. I know she cares. That is an important part. The Minister of State has empathy, gets it and cares.

While I did not attend the committee proceedings this morning, I watched them. A really good project from about three years ago was called Living my Life. It will not solve the problem but it will address it. During my time as Minister of State, I heard exactly what parents were saying. They were growing older and did not know whether they would have the ability to care. A lot of funding goes towards emergencies. When funding is addressing an emergency, the cost is three or four times greater because there will have been no plan in place. Through the Living my Life project, a pilot project down in Galway funded for over three years, we brought Ability West and the Brothers of Charity together in conjunction with the HSE. We got the city council and county council together as well. We provided enough funding to hire an occupational therapist, a physiotherapist and a psychologist. The whole purpose was to work with the families, find the people with needs and have people work together. The Minister of State is not a landlord. It is the job of the local authorities to step up to the plate and provide her with universally designed housing that people can access.

The Minister of State's ask within her strategy is huge, involving something like 900 houses.

Let us just take one little bite off the elephant. Let us start with the pilot project. The pilot project was for approximately €1.3 million to support 33 young adults into supported and independent living. To date, 24 have gone through and the most recent year is coming. It was slow to start and to get entire buy-in because it is a different way of doing business. The different way of doing business is that we need the providers to work together. We cannot have silos, the same as we cannot have silos within Departments. We need the different providers to come together in the different areas and put the people with need at the centre and say we can use the Minister's money a bit differently. With that, we have found beautiful apartments in Letterfrack where there are three people living independently. There is also a residential house across from it that can be supported with the staff. We have corner units from the city council. Galway City Council has been good on this. While we have a programme for Government in housing, we should at the same time have a programme for Government to ensure there is housing left aside to support people so we get that early intervention.

I ask the Minister of State to expand that pilot project nationwide, put it into every single local authority and call in every provider in all of the local authorities to sit down with her and the HSE and ask them to take off 30 houses each. The template is done. We already have the OT, the physio, the social care and the psychologist. We are able to do it there and it is ready to go. We have really good people in our local authorities and have seen what has happened with Age Action Ireland through the Meath local authority. It was able to provide that secretariat support. This is what we need to do. I think it will address a lot of issues for the ageing parents to know there is a plan and pathway. I believe the Minister of State, Deputy Higgins, is the one to do this.

Well said.

Our next speaker is Senator Sarah O'Reilly. I ask Senators to try to keep-----

I have a point of order.

Yes.

I agreed with the Cathaoirleach before this debate that I would get an opportunity to speak. It seems ironic that the longest serving Member with a disability in either House of the Oireachtas - 15 years this month - would not have an opportunity to speak in this debate.

I told the Acting Chair that I am happy to stay until everybody has spoken.

I am just conscious that it was agreed earlier today that we would end at 6.10 p.m., because there is another debate afterwards. That is what we are working towards because a previous debate ran over. To be clear, I am not trying to cut anybody off. I am asking people to be mindful of their contributions in the context of the time constraints.

I will try to be as quick as possible. One campaign that has really struck a chord with me is the Before We Die campaign and initiative. It highlights a quiet but urgent fear shared by many parents of children with disabilities. What happens to my child when I am no longer here? Where will they live? Who will look after them? It is a question that carries enormous emotional weight and worry for parents. We have examples of what can be done, particularly in Donegal. We have seen the development of assisted living facilities that provide not just accommodation but independence and community. Many people in my area of Cavan-Monaghan tell me about this and want it for themselves. I am sad that they can only dream about something similar in our counties. These models show that with the right investment and vision, we can create spaces where people with disabilities are supported to live full and meaningful lives. It is the Minister of State's job to look at that and to replicate it across the country. When she spoke earlier I heard a lot of words about frameworks, policies and legislation. I kept asking myself where the tangible benefit is for the people I represent. We seem to have been on a merry-go-round of all these things for years. It is tangible benefits on the ground that these people are living, waiting and hoping for.

Speech and language was mentioned by Senator Tully. In my area a group of parents took matters into their own hands and set up an organisation called Down’s Syndrome North East where they fundraised because they could not get services like therapy and physio for their children. Their children with Down’s syndrome are looked after by their own charity and they are put to the pin of their collars fundraising daily and thinking of new fundraisers. To me that is the sign of poor government, where parents have to rely on charity and raising money themselves to get speech and language therapy. We all know early intervention is important.

I have cut the rest of this off, but I would like to mention a nicer story. I am also a firm believer in the inclusion of people with disabilities beyond housing and healthcare. It needs to be embedded in cultural life as well. I was delighted today to welcome Run of the Mill into the audiovisual room for the premiere of their new film, "Mary Is Missing". I thank Melissa Byrne and Brian Crehan for facilitating this. The film was brilliant, and I recommend all Members watch it. It is a fantastic piece of cinema and has been longlisted for the 2027 Oscars. Run of the Mill was founded by Aisling Byrne because she recognised the importance of artistic expression and representation. Every person deserves to see themselves in the media, which is not usual for people with Down's syndrome or learning difficulties. They do not see themselves represented in media and programmes. I commend the team and the actors on their commitment to this. They applied for Arts Council funding but they really need multi-annual support. Is the Minister of State aware of any funding in her Department that could help them to ensure this continues? They are funded through the Arts Council. It gives them a great outlook and supports them well in their dreams. Is there any provision for funding in the Department for disability?

The Minister of State is welcome to the House. I know from my experience how committed she is to this portfolio, how she wanted this portfolio and how she is going to make a success of the portfolio. She is not in office that long. We need to give her an opportunity to activate her intentions, which are fantastic. I also pay tribute to the former Minister of State with responsibility for disability, Senator Rabbitte, who we are lucky is now a Member of this House. She did amazing work when she was in that Department. Her door was always open. She always listened and she did everything she could. She made a difference, which is something anyone can be proud of when they do it.

That said, I find myself in agreement with Senator Clonan. You could not have any disagreement with him and the manner in which he articulated the micro challenges on a daily and hourly basis of having a loved one with a disability. There are over 50,000 adults living at home. It is horrendous when you think of it. My experiences dealing with people in the Houses of the Oireachtas have always been positive. I think everybody is supportive of equality and equality of opportunity and ensuring we live in an equal society. However, being supportive of it and making it happen are two different things. Over my 15 years here I always decided to turn the other cheek when something happened, because I considered it an absolute privilege to serve as a Member of the Oireachtas. It was my job to portray the most positive image for other people with disabilities. You can be a Member of the Oireachtas with a disability and operate as one. It has not always been easy. People tend to maybe unintentionally overlook it, but it happens from time to time.

I remember a number of years ago there was a conference in Dublin Castle hosted by the Oireachtas on equality, diversity and disability. All of the speakers were notable people who had achievements in their own right, but the one person who was not asked to speak at the event was me, someone living and working as a politician and an Oireachtas Member.

To be fair to the then Ceann Comhairle, he was horrified when he realised I was not asked to speak. Those are the simple things that make a difference and affect people. We have a major problem with the lack of access to employment for people with disabilities. I am one of the lucky ones. With less than 20% eyesight, I can do a job that I love and can be good at a job that I love. The fact that I have been elected and re-elected three times in succession means I must be doing the job reasonably well. However, there are many more like me the length and breadth of the country who cannot and do not get the opportunity to follow their dreams and work in a job that gives them fulfilment, gives them an income and gives them equality, where they pay their taxes and are full members of society.

The objective of the Minister of State and the Government should be to ensure that every person with a disability can maximise their ability and can work, can socialise, and can be involved in culture, arts and sport. I listened to her opening statement and I know this can only be achieved with a whole-of-government approach. The Cabinet handbook has to be disability-proofed; I do not think it is. Everything about every Department and every Minister's portfolio needs to reflect disability, access and equality. We will not get everything right. The Minister of State will not get everything right, but she should give it a damn good shot and I have every confidence that she will.

I know the clock has been stopped for a while. Senator Cosgrove has one minute.

I will keep it very short. The Minister of State is very welcome. As we all know, job roles within disability services are extremely specialised and cover very distinct elements of care. I worked within disability as a community worker in the Irish Wheelchair Association many years ago and so I know there are different roles involved. There are personal assistants and care assistants, who provide intimate and personal care every day. Social care workers help to develop care plans and manage the day-to-day tasks designed to increase the client's independence.

I have to be very careful with what I say here because of a possible industrial relations dispute within disability services. I think it is very preventable. It is due to a lack of strategic planning and understanding of what is needed on the ground. A number of social care workers have been put in place to fulfil personal and care assistant roles, meaning those social care workers are not able to fulfil their job properly and the same applies for personal care assistants. I might liaise with the Minister of State further about it. It is really important for HSE staff and management staff within disability services to be cognisant of the various different roles required to run the service.

I am delighted the Minister of State is in this role because I know she will do a really good job in it.

I wish to clarify something here. The statement I made about nothing in the budget for disability related to the cost of disability. I was very clear about that. No double payments or energy credits were given. I did not say there was nothing in the budget for disability. I said there was nothing to address the cost of disability, which I recognise is not something in this Minister of State's Department.

I welcome the opportunity to say a few words. I thank the Minister of State for being here to listen to us. It is important that we spend time, even during our Order of Business, raising specific areas about those living with disabilities. Always, we are talking based on the lived experience of people we know or people who have contacted us on these issues. I acknowledge that this is a key issue for Government. The Taoiseach has established the disability unit within his own Department to bring about a renewed focus, accountability and urgency. We have to look at the whole person. We have to look at education and inclusive learning. We all got an invitation today from the Minister, Deputy James Lawless, to a presentation about two specific schemes for third level access which is hugely important.

Regarding employment, and someone having the dignity of having a job and being able to work, we cannot speak highly enough about the Oireachtas work learning, OWL, programme we have here. Ours is the first and only parliament in the world to bring it in. Some 75% of those who have come through the OWL programme have succeeded in getting a permanent job. We have to look at ways to expand and develop that, and encourage other parliaments to be able to do it because it is a really good case.

Independent living and active participation in social, cultural and sporting life are hugely important. I saw the film that the Senator was speaking about earlier by the group from Celbridge, which was absolutely excellent and really good to see. We need to see more of that and provide opportunities for people to be able to express themselves in different ways. I welcome the discussion and I hope we will have the opportunity to discuss this again on an ongoing basis.

I thank the Acting Chair and all the staff in the Seanad for facilitating us in running late. It is really important that everybody who wants to contribute to this debate has the opportunity to do so and it is really important that I have the opportunity to listen to those views. I thank everybody who contributed.

I have copious notes so I ask Senators to bear with me while I try to respond as best I can to the issues raised. Employment was first raised by Senator Byrne and was also touched on by Senator Martin Conway, Senator Tully and Senator O'Loughlin who reminded us of the success of the OWL programme. I really welcome that we now have had the first meeting of the forum on unemployment of persons with disability, convened by the Minister of State at the Department of Enterprise, Tourism and Employment, Deputy Alan Dillon. That is another example which shows that the issue of disability is now cross-departmental. Just today, I met with representatives of an organisation who expressed an interest in participating in that and I hope that will be accommodated. That is really progressive and a good step forward.

In-school therapies were mentioned by numerous contributors. While that is led by the Department of education, it is a really significant intervention. That is now happening in many special schools across the country. It was ramped up quite quickly and we will continue to do that.

I thank Senator Tully for reminding me that responsibility for the cost of disability is not in my Department. However, a lot of work is happening on that. The Minister, Deputy Dara Calleary, has recently run a consultative forum and a survey on the cost of disability. I know that survey has just finished and was live up to about ten days ago. The responses are being collated and the results will help form the cost-of-disability payment as committed to under the programme for Government. I certainly hope and expect it will be in the upcoming budget.

Senator Margaret Murphy O'Mahony spoke very eloquently about the direction of travel being very clear. We have record investment and a genuine shift in policy. While I completely acknowledge Senator Clonan's frustration and respect where he is coming from as a parent, an advocate and a politician, I concur with what Senator Murphy O'Mahony said that there is a clear direction of travel here. I do not accept what he said around urgency because I see urgency every day. I see it with my Department officials and with officials in the HSE. I see it in the section 38 and section 39 organisations that I visit. I see the sense of urgency by our DPOs and organisations which are all working collaboratively. We have record funding. We now have strategic planning. We have new law coming in. Reviews have been announced of the two most significant pieces of legislation, the Assisted Decision-Making (Capacity) Act and the Disability Act itself. We have a disability unit sitting in the heart of Government, in the Department of the Taoiseach. We are recruiting people. Senator O'Reilly used the word "tangible"; that is tangible. We have new laws. We have policies. We have people. We have new budgets. We cannot do anything unless we have that. My officials, the HSE and section 38 and section 39 organisations have come together and successfully fought for that. That is what we are delivering on.

Senator Clonan spoke about two pieces of correspondence. One was his correspondence to me, 0923 on 14 April. He should have received a reply and I suggest he checks his inbox. I got that triple checked while I was here. An acknowledgement went to him on that date. He also referred to a letter having been withdrawn.

I have chased this twice with the HSE. That letter should never have happened. That letter should never have gone out. Nobody can stand over that. I have asked twice whether an apology was issued. I have been told twice that an apology has been issued to the mother of the young person at the centre of that. I have asked to see a copy of that apology. I was told, and I completely accept, that I cannot see a copy of it because there is personal information in it. I have taken that at face value. My understanding is that a letter of apology has issued and that happened a number of weeks ago, and rightly so. We were very clear that the letter should have gone out. My understanding is that it did.

A numbers of Members - Senators Clonan, Sarah O'Reilly, Harmon, Tully, Kennelly and others - referenced the Before We Die campaign. I was at meetings this morning, but I understand that this morning's meeting of the Committee on Disability Matters was very emotional. I am not surprised by that because I have met that group twice. The first time was at their request. It was an emotional meeting. The second time was at my request because I asked if we could do a follow up meeting and if the HSE could be at that meeting so that we could have the right people around the table to be able to make progress. That is something that I am really committed to doing in this space. I thank all those people who are volunteering their time for this campaign because they are families who are already under pressure. They already have so many additional responsibilities compared with many other families, particularly people of that age, and they should not be in that situation. I am working with them and the HSE to help to resolve that situation for as many people as we can.

I thank Senator Rabbitte for her remarks. I acknowledge the incredible amount of work that she has done in this sector and for people with disabilities and the tangible and real impact that she has had.

Well said.

Hear, hear.

The Living My Life programme that Senator Rabbitte spoke about was also spoken about at that meeting with the HSE and the Before We Die campaign. I met Remember Us with Deputy Grace Boland. It was discussing that same issue. Earlier today, I met with a young advocate to also discuss that issue. The Living My Life programme is relevant. The Senator is absolutely right. That is why it was spoken about at that meeting with Before We Die.

The new housing officer positions within the HSE are really important. They relate to what Senator Tully spoke about as regards her local authority area of Cavan. We now have six positions for each health organisation area within the HSE that will be related to housing. I do not have the exact title with me, but it is like a housing officer within the HSE. A number of those roles are already filled. We have four out of six of them filled. Those roles are to act as the conduit between the HSE or the provider and the local authority, AHB or developer. We want to get this moving. That is where urgency-----