Supporting People with Disabilities and Carers: Motion [Private Members]

Deputy Pauline Tully

I move:

That Dáil Éireann:

notes that:

— the State signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007 and ratified the Convention in 2018, but has yet to ratify the Optional Protocol;

— more than one in eight people over the age of 15 provide care, with approximately 500,000 family carers in the State, and that the majority experience barriers accessing respite services;

— the commitment in the Programme for Government: Our Shared Future to update the National Carers' Strategy remains unfulfilled; and

— the commitment in the Programme for Government: Our Shared Future to provide for a statutory home care scheme remains unfulfilled;

further notes:

— the publication of the Action Plan for Disability Service 2024-2026; and

— the publication of the Roadmap for Service Improvement 2023-2026: Disability Services for Children and Young People;

considers that:

— waiting lists for disability services are far too long, where they are maintained, and that personal assistance services are far too limited;

— the €55.6 million in additional new development funding which was provided for disability services in Budget 2024 is not adequate to deliver the measures contained in the Action Plan for Disability Services 2024-2026; and

— financial supports for people with disabilities and family carers are inadequate and fail minimum essential standards of living tests;

recognises the immense contribution to the common good of the unpaid work of family carers;

restates its commitment to supporting the fullest possible independent participation of people with disabilities in our society;

condemns the Government for its failure to introduce an updated National Carers' Strategy and its failure to modernise the provision of home support and personal assistance services for people with disabilities; and

calls on the Government to:

— deliver rights-based access to care for people with disabilities;

— set a date for the ratification of the UNCRPD Optional Protocol;

— outline a multi-annual funding plan for delivering the Action Plan Disability Services 2024-2026, and in particular extending independent living supports, access to therapies, and availability of respite services;

— increase access to services such as home support, personal assistance, day services, therapies, and community services for people with disabilities;

— introduce a comprehensive rights-based charter for family carers and update the National Carers' Strategy to provide the necessary steps across all Departments and in order to deliver the rights in the charter;

— directly support carers through increased provision of respite services;

— relax the Carer's Allowance means test and increase Disability Allowance, Invalidity Pension, Illness Benefit, Carer's Allowance and Benefit, and the annual Carer's Support Grant; and

— invest in special education and extend the fund for students with disabilities across further education and training.

For decades, the policy response when supporting people with disabilities in Ireland has reflected the medical model of disability, where people were seen as having something wrong with their body or their mind. The United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, calls for a transformation of the policy response from the medical model to the social or human rights-based model of disability, where people with disabilities are no longer seen as medical objects to be institutionalised, but as individuals who are capable of living independently, being included in communities, and contributing to society as citizens with rights that are equal to any of the rest of us.

However, the progress in implementing these rights has been extremely slow, to say the least. A major issue in this regard is the failure to ratify the optional protocol of the UNCRPD. While Ireland ratified the UNCRPD into law in 2018, it was the last EU member state to do, some 11 years after the convention was first signed. We still have not ratified the optional protocol and we are one of three EU states that have not done so. If it was ratified, it would enable disabled people to apply directly to the United Nations if they feel their rights under the convention are not being respected. It would offer access to justice for rights holders where all available domestic remedies have been exhausted.

In June 2021, the disability matters committee heard from the Secretary General of the Department of children. Their stated aim was to ensure the ratification of the optional protocol without delay and as soon as possible. In fact, I think it was mentioned after the Assisted Decision-Making (Capacity) Act was signed into law. That was signed into law more than a year ago and the optional protocol has still not been ratified. We also heard from the Irish Human Rights and Equality Commission, IHREC, and Gerard Quinn, the UN rapporteur, both of whom have said that there is nothing stopping the optional protocol from being ratified at any point. This needs to be done without delay. It should have been done long ago and there should be no more excuses.

Article 19 of the UNCRPD calls for independent living and inclusive life in the community for people with disabilities. The rights, supports and services are necessary to enable disabled people to achieve independent lives. They should be integrated and a part of their community. The delivery of appropriate supports and services to assist disabled people to achieve independent living is centrally important, but they are not available in the way they should be. We need to see more PA services so that people can live independently. We need to see accessible housing. We need to see assistive technology in those houses so that people can live alone there. We need to see accessible transport. We need to see all Government policies being disability-proofed to ensure that disabled people have access to those services.

Disabled people should be consulted on everything; it says so in the UNCRPD, but it is obvious that they are not. Most recently, this was evident with the Green Paper on disability reform. My colleague, Deputy Ó Laoghaire, and I met with a number of groups and individuals to discuss that, because people were very concerned about it. No one seemed to be consulted about the Green Paper; it simply landed on them without any prior warning or discussion. They have been worried about the impact that will have on their lives. That is symptomatic of the indifferent way in which disabled people are still being treated. It is no wonder that the current supports and services that are provided are far from adequate.

The disability capacity review shone a light on the large gaps in service provision, but evidence from previous budget allocations for disability services from this Government does not fill me with confidence that these gaps will be closed. There does not seem to be an appetite or focus from the Government to deliver the additional funding that is needed. In budget 2024, the Government allocated €64.1 million for new measures, but the disability capacity review explains clearly that disability services will need at least €80 million to €90 million in additional resources every year.

When the State fails to deliver on its responsibilities, the onus regularly falls back on families. It is estimated that family carers in Ireland number in excess of half a million and they save the State an estimated €20 billion each and every year. They do incredible work, but our family carers frequently feel forgotten, ignored and taken for granted.

The national carers' strategy was published in 2012. It sets out 42 actions to improve lives of family carers and those for whom they care. The programme for Government in 2020 contained a commitment to progress, review and update the national carers' strategy. Like so many other commitments from the Government, however, this has not materialised. People with disabilities and carers deserve better. I want to comment on what the Taoiseach said on a programme on Virgin Media yesterday evening around carers. He clearly has absolutely no understanding of what family carers actually do. He indicated that he would care for family members if he had to. Yes, he would pay for care for family members because he is in a position to pay for family carers on the wages that he earns. Most family carers are not - they are financially struggling to make ends meet and encounter additional costs in relation to the care they provide.

Deputy David Cullinane

I have a grá for carers - I imagine everybody in this House does - because of the work they do. A number of weeks ago I was asked to visit the home of a person who was being cared for and there was an issue that they were asking me to assist with. The carer was present in the house. What struck me was that the carer was an older lady who was looking after her husband, and she had great difficulty lifting her husband from the bed, yet that is what she had to do every day. If we look at the tasks that carers do to look after people who are being cared for, particularly older people, it is a really difficult job. I meet with Family Carers Ireland and disability groups on a regular basis. Many of the issues they raise with me are ones we have not addressed since I first got involved in politics well over 20 years ago. That is to all of our collective shame. I recognise that there have been some improvements in some areas since then but we still have an awful long way to go.

In the motion we have put forward today, all of the proposals are asks that we should be doing as a matter of course. I cannot understand why some of them are still subject to debate or delay. We are looking for a rights-based approach to access to care for people with disabilities. From my perspective, that simply is not the case. If we look at the action plan that came from the disability capacity review, there are no timelines in respect of year-on-year targets, and no sense of how any of that will be funded. We know we had a capacity review that many of these groups were really concerned about. It identified what needed to happen but there was no plan, no resources and no strategy to underpin it. Even with the action plan, it is absent when it comes to timelines and funding. We do not know exactly what funding will be delivered on a year-to-year basis. Very often it is at the whim of the Minister for Finance and the Minister for public expenditure and reform in each budget. I do not believe that is the way forward. If we want to properly resource a strategy or an action plan, it has to have multiannual funding.

The issue of respite care and respite services is so important for the carer but also the person who is being cared for. I gave the example of the older lady whom I witnessed trying to lift her husband out of bed. There are lots of other really difficult circumstances that carers find themselves in, particularly when it comes to children and adults with profound disabilities. It is a really difficult, challenging job. They love the person they are caring for but they need a break and respite. Very often they cannot get it because the services are not there. I still have not heard from any member of Government as to when they will set a date for the ratification of the UNCRPD optional protocol. Nobody has explained to me why the State is not doing this. Every single time I meet disability groups, they raise this with me. Every single time there is a motion brought forward to this Dáil by any political party, including when parties that are in government now were in opposition, we have all called collectively for this to be done, yet nobody has given me a reasonable answer as to why a date still has not been set. That is incredible and it should not be happening. I would like to hear from the Ministers when they come in and deliver their contributions why it is that we cannot ratify this protocol. I have never been given a satisfactory answer.

We obviously have to support the person who is caring. We need to do more in terms of reviewing the means test for carers and looking at the payments carers get. We provided for that in our alternative budget and we produced a very comprehensive rights-based charter for carers that talks about delivering on all of these issues over a term in government. However, we also have to include access to services for the person who is being cared for. If you are caring for someone and it is a struggle to access very basic services such as occupational therapy, speech and language therapy, physiotherapy or respite care, that has an impact on the person who is caring for that individual as well. Our motion puts forward very sensible solutions and proposals where we need to invest and do better to deliver for carers, for people with disabilities and for all of those who are being cared for. We should commend all of those carers who do an absolutely amazing job, day in, day out and week in, week out to look after those whom they look after.

Deputy Patricia Ryan

I thank Deputy Tully for her work on this Private Members' motion. I welcome Shane Scanlan of the nursing homes alliance to the Gallery this evening. People with disabilities and their carers deserve so much better than the raw deal the Government is currently giving them. These people already deal with so many difficulties in their daily lives. They need access to supports and services, which can mean the difference between struggling and living their lives to their best ability. I am referring to things like timely assessment of needs, therapy supports and personal assistance. Having listened to Shelly Gaynor of Independent Living Movement Ireland speaking on how her personal assistant is her life, I understand how vital these supports are to people like Shelly and what a difference they make. Instead, the people with disabilities and their carers feel abandoned and cast aside by successive Fianna Fáil and Fine Gael Governments, which have consistently failed to deliver rights-based access for supports for disabilities. The disability action plan is all well and good but in the absence of a proper multiannual funding plan to deliver it, including extension of independent living supports, access to therapies and being able to access respite services, it is all very much pie in the sky.

The dedicated individuals caring for people with specific needs also need more support. You cannot call a payment a financial support if it does not even come up to the minimum essential standard of living test. Measures like relaxing the means test for carer's allowance and increasing amounts across invalidity, disability and other related payments would have significant benefits and the Minister knows that. What is needed here, and what Sinn Féin is calling for in this motion, is the immediate ratification of the optional protocol, introduction of a rights-based charter for family carers, and realistic standard of living payment levels. There has to be proper payments. In government, Sinn Féin would prioritise people with disabilities and carers and it is time the Government did too.

Deputy Réada Cronin

Our motion this evening addresses how supports for people with disabilities and their carers must be rights based. Táim sásta labhairt ar ár rún tráthnóna agus gabhaim buíochas leis an Teachta Tully as ucht an rúin seo. Tá sé an-tábhachtach gach cúram agus cúnamh a thabhairt do dhaoine faoi mhíchumas agus dá gclanna freisin.

After working in the disability sector before I was elected to this Chamber, the ratification of the optional protocol was always going to the first matter I raised during Questions on Policy or Legislation mar Theachta Dála do Chill Dara Thuaidh, agus is sin a rinne mé. I saw the Minister's email on the optional protocol popping into my inbox this afternoon agus thaispeáin sé dom cad atá tábhachtach don Rialtas seo. We are into the fifth year of this Government and you are announcing an interdepartmental group to accelerate its ratification. I do not mean to be disrespectful, but that merits a slow hand clap. I could talk all night about the damning indictment of continuous governments that parents have to spend years of their children's young lives not only as a mam and a dad but also as full-time campaigners. I could talk all night about parents from Naas up to Leixlip and every town in between contacting me about their autistic children needing assessments of need. I could talk all night about families in Kildare North crying out for respite.

Crucial to the rights-based republic is extending independent living supports. I have stood here often enough talking about men and women in north Kildare who are being denied their independent lives due to a lack of supports. The Aire Stáit, an Teachta Rabbitte, saw how wonderful it was when she visited Dara Community Living in Celbridge last year. Disabled people living their lives in the pursuit of their happiness - I love this unashamed aspiration in our Proclamation - is their right just because they were born in and are lucky enough to be citizens in their own right of our work-in-progress republic.

I and my party believe it is the responsibility of the State to vindicate the equal rights of disabled people. Ní féidir linn am ar bith a chailliúint

Deputy Pearse Doherty

Gabhaim buíochas leis an Leas-Cheann Comhairle agus leis an Teachta Tully faoi choinne na hoibre atá sí ag déanamh sa rún seo ach fosta don obair atá á dhéanamh aici ar son daoine faoi mhíchumas agus cúramóirí amuigh ansin. Bíonn an cheist seo á hardú aici arís agus arís eile. People with disabilities and carers deserve better and the time for action is now. In Donegal, and indeed throughout the State, people with disabilities and carers feel let down by this Government and even abandoned, if I may say so. They need support that goes beyond lip service.

The motion before us sets out Sinn Féin's plan to ensure rights-based access to services and support for people with disabilities and carers. These services include assessments of need, personal and home care assistance, therapy supports and, crucially, respite. It is also high time the Government ratified the optional protocol to the United Nations Convention on the Rights of Persons with Disabilities and committed to a definitive timeline for doing so. This should not be put on the long finger any longer. Our motion also calls for the development of a multi-annual funding plan to deliver the disability action plan. We need to be clear. The development funding provided for disability services in the recent budget falls far short of what is needed to deliver real change and to support people with disabilities.

Family carers also need recognition and support. It is estimated that family carers save the State approximately €20 billion each year. The contribution to those they care for, to our communities and to society is undervalued and not paid the recognition it deserves. That must change. We need a comprehensive rights-based charter for family carers with an updated carers' strategy to be implemented across all Departments as part of a whole-of-government approach. This must be delivered with a relaxation of the carer's allowance means test and an increase in the carer's support grant and in disability payments to back up words of recognition with action.

This is Sinn Féin's plan we are putting before the House. It is what we would deliver in government. It is simply unconscionable that financial supports for people with disabilities and family carers fall below a minimum essential standards of living test. That needs to change and it needs to change now. People with disabilities and carers deserve unwavering support. The plan that is before us would give action to that support. I ask everyone in this House who has the interests of those with disabilities and those who care for others at heart to support this motion so that we can build a more inclusive, more equal and more compassionate Ireland. I ask the Government not only to support the Sinn Féin plan, but also to implement it and to do the right thing for carers and for people with disabilities. I ask it to take our plan and implement it.

Deputy Sorca Clarke

People with disabilities and carers in my constituency of Longford-Westmeath and across the State deserve much better than feeling abandoned and constantly let down by the Government. They need to see the delivery of substantial supports like assessments of need, therapy supports, personal assistants, home care assistants, assistive technology and respite. They need the Government to ratify the optional protocol to the UNCRPD. They at least need a date today, because the protocol calls for the transformation of policy responses from a medical model to a human rights-based model, where people with disabilities are no longer viewed and treated as medical objects, but as individuals capable of living independently, being included in our communities and contributing to our society like everyone else.

Ireland signed the UN Convention on the Rights of Persons with Disabilities and finally ratified it in 2018. Those articles are binding. That means Ireland has made a commitment to protect and promote the rights of people with disabilities. However, the Government did not ratify the optional protocol and the door to appeals and complaints remains firmly closed to those with disabilities. Access for children to assessments of need under the Disability Act and the CDNT model is now so broken that not only are children being failed and continuing to suffer, but they are ageing out of the system. The Department of Education has removed the HSE's data from its model of assessing the allocation of special education teacher hours because it is so unreliable. This has resulted in further deep fear and distress among parents of children with additional needs. Is it any wonder that CDNTs are experiencing serious recruitment and retention issues which are driving the waiting lists to be even longer? The inability to provide an equitable service in line with demand is grossly unfair and it needs to stop. This system is unfair. It is failing to meet the needs of those who need care and those with disabilities. It is failing to support those who provide care. The very same people who are often left to pick up the pieces when the State fails are the same people who provide the State with a saving of €20 billion a year. I call on everyone to support this motion, to implement it and to do right by those with disabilities, those who need care and those who provide that care.

Minister of State at the Department of Health (Deputy Anne Rabbitte)

As Minister of State with responsibility for specialist disability services, I am pleased to be here to address the issues raised in this Private Members' motion on supporting people with disabilities and carers. The motion touches on a wide range of issues which span the remit of several Departments including mine and the Departments of Health; Housing, Local Government and Heritage; Social Protection; Education; and Further and Higher Education, Research, Innovation and Science. I will do my best in my allocated time to address as many of the issues raised as possible.

The Minister, Deputy O'Gorman, and I are open to the early ratification of the optional protocol, subject to the State being in a position to meet the obligations that arise. In order to map out the requirements for ratification my Department has commissioned external legal advice as part of an ongoing scoping exercise, which I expect to conclude shortly. Earlier today, the Minister, Deputy O'Gorman, briefed the Cabinet on plans to accelerate consideration of the issues around ratification and of the intention to establish an interdepartmental group, which the Minister will speak about later. The group will report back on its work in the coming months so that the Government can make a fully informed decision on the next steps toward ratification of the optional protocol.

Family carers provide care to children or adults with additional needs, including physical or intellectual disabilities, frail older people, those with palliative care needs or those living with chronic illnesses, mental ill-health or addiction. Work is progressing across the Government to improve supports to carers. The Government has taken an approach that includes increases to payments and to income disregards for means assessment as well as a significant cost-of-living bonus and double payments for people with disabilities and carers.

The Minister for Social Protection has announced the establishment of an interdepartmental group with the Department of Health, tasked with looking at the area of means-tested payments to family carers. The work of the interdepartmental working group will be informed by a broader review of means testing currently under way in the Department of Social Protection. The work of the interdepartmental group will also be considered in the context of the national carer's strategy, led by the Department of Health. There is also a range of other supports for carers provided by the Department of Social Protection which are not based on means assessment, such as the carer's support grant, carer's benefit and the domiciliary care allowance.

This year, the Department of Education will spend in excess of €2.7 billion, or more than 26% of the Department’s budget, on supporting children with special educational needs. This includes supporting children with special educational needs in mainstream classes; funding for new special classes and special school places; additional special educational teachers and special needs assistants; and funding for the National Educational Psychological Service, NEPS.

In the area of further and higher education, the Minister, Deputy Harris, announced in February the roll-out of higher education courses in ten higher education colleges that will provide significant opportunities for students with an intellectual disability.

In my Department and under my remit, the Action Plan for Disability Services 2024-2026 was published in December 2023. It sets targets for addressing a number of issues, namely demographic pressures, making significant progress on unmet needs, working to replace remaining congregated and institutional residential care settings with community-based models; and continuing the reform towards individualised, person-centred models of service while growing service capacity appropriately.

Budget 2024 saw increases in funding for specialist disability services, with a total of €2.9 billion committed for 2024 across a range of services including residential care, respite, children’s services, adult day services, personal assistance, home support and community neurorehabilitation teams.

Specifically, €74.1 million has been allocated for the new development measures, which will provide greater investment across a range of disability services and contribute to the progressive realisation of the action plan. It should be noted that unlike the position for capital expenditure, where multi-annual commitments are made within the national development plan, the Estimates process for current expenditure allocates funding on an annual basis. No formal mechanism currently exists to provide funding on a multi-annual basis to providers.

Regarding the services required to support people with disabilities and their carers, the motion notes barriers in accessing respite services. Respite is crucial for carers, families and those to whom care is given. It has been a particular ambition of mine to ensure respite provision is continually expanded. Additional funding for this purpose has been secured in successive budgets. Respite can occur in a variety of settings and for various lengths of time, depending on the needs of individual service users and their family or carer. Respite is not always centre-based overnight provision. It can be provided in a number of ways, including by means of extended day services, clubs or activities. I secured a significant €15 million in additional funding in budget 2024 for specialist disability respite services. In a full year, the provision for respite alone is €25 million.

My Department and the HSE are currently examining existing service levels across the country with a view to supporting the utilisation of existing centre-based capacity to the greatest extent possible - colleagues will have heard me talking about sweating the assets - while also supporting new respite options, particularly day respite. The HSE is endeavouring to give particular attention to areas where respite provision is currently lower than the national average. It is hoped that information can be provided imminently to CHOs with regard to the objectives and allocations for 2024.

The motion calls for an increase in home support and personal assistance services. The action plan commits to the delivery of 110,000 additional home support hours between 2024 and 2026 to address shortfalls in services and support people with disabilities living at home, in line with Article 19 of the UNCRPD. In addition, the action plan sets policy priorities in home support services in light of the UNCRPD. The proposed statutory home care scheme being led by the Department of Health will involve developing a formal policy and service description, including developing eligibility and prioritisation criteria. The action plan also commits to providing 800,000 additional personal assistance hours in the same period, with the delivery of 80,000 additional hours in 2024. A policy review of personal assistant services in light of the UNCRPD is already under way, with a working group involving key stakeholders and disabled people's organisations tasked with developing formal policy and service description, devising eligibility and prioritisation criteria and considering the best form of governance and regulation.

There were several queries about the filling of posts. A total of 500 people have applied for jobs on the various CDNTs. In Deputy Tully's area, 80 candidates are going forward for interview, with interviewing starting in the next week. In Deputy Cronin's area, CHO 8, 121 candidates have been selected for interviewing in the coming weeks.

It is important to note that apart from provision for respite, residential care, personal assistance and so on, additional provision was made in the budget this year. This provision includes funding for Chime, an organisation for people who are hard of hearing, Erb's palsy, the Central Remedial Clinic, the online partnering in occupational therapy telehealth services, POTTS, programme for dyspraxia, and ChildVision. Funding for Debra Ireland will for the first time ever be included in the plan, as well as provision for the Crann Centre in Cork. There is provision for the work by the National Rehabilitation Hospital clinical lead on a White Paper for the care of children with neurological conditions who are being discharged from hospital. Those children will be passed back to the relevant CDNT or community neurological team. We are also working with Foetal Alcohol Spectrum Disorder Ireland on developing its research hub in County Clare.

My ambition for 2024 is to continue to work with my Department and on an across-government basis to do the very best I can, along with the Minister, Deputy O'Gorman, for people with disabilities and their carers. I recognise there are further steps to be taken towards full alignment of services with the UNCRPD principles. I am firmly focused on ensuring services are progressively enhanced to deliver real and significant changes in the lives of people with disabilities.

Deputy Johnny Guirke

It is often the case that the elderly and people with a disability feel they have been forgotten about. Many fear they will have to move out of their home because they cannot continue to live independently due to a lack of support. Many carers I have spoken to have told me they go into a client's home on their days off to assist them. That is scandalous. If not for the compassion shown by those carers, their clients would not cope. Simple tasks like cooking meals, taking medication and turning on the heat would not happen.

In my constituency of Meath West, many families have made contact to say that the provision approved for them by the HSE and the hours of care they actually receive are worlds apart due to a lack of carers to meet the need. Services in Meath are chronically under-resourced and families suffer as a result. It is unacceptable that the huge disruption caused by the lack of occupational therapists in Meath is allowed to continue. The system should be able to cope with vacancies as they arise, with temporary staffing solutions in place to cover absences. We need forward thinking and planning to create a workforce that meets the needs of our growing population.

We need to see a huge increase in respite hours. Families value their respite. Not providing adequate provision in this regard is a failure on the part of the State. The Government could do so much more. No one is happy about the lack of progress. Least happy are those people, and their carers, who are seeking to use these services. We are all too used to people being left behind by the State. It is time the Government caught up and delivered proper care and support for these people.

Deputy Maurice Quinlivan

This motion is about providing for those with disabilities and their carers. They deserve so much better than they are getting at the moment. They deserve the quick delivery of the services and support they need. There are more than 500,000 family carers across the State. They are tremendous people who have made great sacrifices in their own lives to care for a family member. They are often the unsung heroes in our society. It is one of the great pleasures of being a TD for Limerick that I have the opportunity to see the work they do and the compassionate way in which they do it. They care for their family members out of a sense of love and compassion but, like all of us, they reach a point of exhaustion. Depending on the challenges faced by the person they care for, their role comes with a lot of stress. Just like those they care for, they need a break. Yet, three quarters of them get no respite whatsoever. In 2022, fewer than 5,200 people received a respite service out of the estimated 20,000 people with intellectual, physical, sensory or autism challenges who are living with their family. This major shortfall should not be allowed to continue.

On Friday, we will vote in a referendum on carers. I will be voting "Yes" despite the limitations of the amendment. If it is carried, as I hope it is, it will be a step in the right direction in terms of recognition for family carers. However, many carers and people with disabilities have huge concerns about the referendum. The Government has made a mess of it. Those concerns will have been heightened by An Taoiseach's comments yesterday on care, which were reminiscent of Margaret Thatcher's infamous statement that there is no such thing as society. Without meaningful change in how we approach disability and the role of carers, a "Yes" vote will mean little to many. Carers and families must be supported. Carers need direct support through the increased provision of respite services. Those with disabilities need more access to services such as home support, personal assistance, day services, therapies and community services. We need a relaxation of the carer's allowance means test and an increase in the disability allowance.

As it stands, the supports for people with disabilities and family carers are inadequate and have been for some time. We have brought forward numerous motions on these issues that have had the well-being of carers and people with disabilities at their core. Rather than deliver in this area, the Government has opted to delay provision and defend its failings. Under a Sinn Féin government, people with disabilities and carers would be prioritised. I commend my colleague Deputy Tully on bringing forward this motion and the work she has done on the issue of disabilities.

Deputy Johnny Mythen

I thank my colleagues for bringing this important motion to the floor, particularly Deputy Tully for the personal work she has contributed towards it. The Action Plan for Disability Services 2024-2026 is welcome. However, there is not a mention in the plan of ratifying the most important element of the UNCRPD, which is the protocol on the right for the individual to make a complaint to the United Nations.

A report undertaken by the Vincentian Partnership for Social Justice on behalf of Family Carers Ireland found that when compared with a household without a disability, the household caring for a child with a profound intellectual disability faces a greater depth of income inadequacy. Report after report has stated that people with disabilities are more adversely affected than healthy people by inflation and the cost of living and three times more likely to fall into poverty.

They must have enough money to live on. Allowances need to be increased across the board, and the carer's allowance should not be subjected to a full means test. Services are at an all-time low, waiting lists for speech therapists, occupational therapists and assessments are on the increase, and children and adults must wait for years for basics such as a wheelchair. This is the reality of living in Ireland in 2024. Existing staff are doing their best but the recent recruitment and retention ban is a genuine cause of concern for them and their clients and it is adding even more pressure to the already depleted services.

I have spoken many times about the group Families Unite for Services and Support, FUSS, whose members in County Wexford are campaigning for their children's rights. When are they and the children awaiting disability services in County Wexford going to see proper services provided? When are we going to see the vacancies in occupational therapy, speech therapy and psychiatry filled?

Transport, especially train services, is also a major issue. Often, journeys must be prebooked and they require extra staff for embarking and disembarking. This limits travel by people with disabilities to certain days and it is discriminatory. Local authorities must be given funding to provide and build independent living quarters and increase grants for small home extensions and conversions.

Family carers comprise the most valuable asset this country has. Without their individual sacrifices and help, the whole health system would crumble, yet they have very little or no access to respite. There are no respite beds available in Wexford town.

I acknowledge all the organisations, mostly voluntary, that advocate day in and day out and that look after people with disabilities. I also acknowledge the parents, carers and siblings, who deserve better services and much more help than what the State is providing.

Deputy Seán Crowe

The biggest concern expressed to me by older carers, but not exclusively, relates to who will look after their loved ones when they are gone. They go to bed worrying about what will happen if something happens to them, and they probably wake up in the morning with the same nagging question. Things may have improved but most of us accept we have a long road to go. A constitutional referendum that simply refers to carers and then fobs them off with no real promise of support is absolutely useless.

There has been an abject failure to modernise the provision of home supports and personal assistance services for people with disabilities. Words alone do not recognise the immense contribution to the common good of the unpaid work of family carers.

Caithfimid tacú leo siúd atá ag tabhairt cúram do sheandhaoine agus do dhaoine faoi mhíchumas. Tá ár mbuíochas ag dul dóibh. Cuidíonn siad linn ar fad leis an gcúram sin agus sábhálann siad na céadta milliún euro don Stát. Tá ard-mheas agam orthu.

There must be a firm commitment from the State to support family carers. We must relax the carer's allowance means test and increase supports such as the carer's allowance. We must set a date for the ratification of the optional protocol to the UNCRPD.

Tá cearta cúramóirí ag teastáil seachas béalghrá sa Bhunreacht. Carers need rights, not empty words, in our Constitution.

Deputy Dessie Ellis

Tá áthas orm go bhfuilim ag labhairt mar gheall ar an tairiscint seo. Tá timpeall 23% den daonra faoi mhíchumas de sórt éigin agus a lán acu ag fáil cuidiú ó chúramóirí. One of the great failings of this Government and those that preceded it has been the disparity between what they say and what they do. Disability services in this State are dysfunctional. People with disabilities are suffering because of their inability to properly access services or specialised therapies, and there is a lack of expertise across sections of the disability services. What are needed are more streamlined and connected services and early interventions across the health services for people with disabilities. Disability services need to be urgently reformed and there needs to be sustainable funding for them.

The Government needs to ratify the optional protocol to the UNCRPD. This has been an ongoing issue since the convention was first signed in 2007 and ratified in 2018. The protocol remains to be ratified here. It is important that it be ratified because this would strengthen the convention by establishing an individual complaints mechanism for those with disabilities when their rights under the convention have been denied. Under the protocol, individuals can bring complaints to the UN after all domestic remedies have been exhausted. Ireland has a terrible employment record regarding people with disabilities and there are serious deficiencies in the education sector regarding those with disabilities. The State needs to progress their rights meaningfully. Not ratifying the protocol, which the Government promised it would ratify in its programme for Government, means those with disabilities have no proper mechanism to hold the State to account. Many feel that they are being treated as second-class citizens.

Deputy Duncan Smith

I thank Sinn Féin for introducing this important motion. Every time we debate disabilities and carers in the Dáil, a structural issue arises. We have an issue like we had in UHL today, for example. The matter is the responsibility of the Minister for Health. If we are talking about taxation reform, the Minister for Finance is responsible, and so on, but responsibility for disabilities and carers cuts across a host of portfolios. We need the Minister for Health here in addition to the Minister for housing, the Minister for Social Protection and, of course, the Minister for disabilities. We have the Minister of State responsible for disabilities with us now. In response to my contribution and that of others, a cross-governmental approach is required. Increasingly, I am of the view that we need a senior Ministry for disabilities alone. The Minister, Deputy O'Gorman, who holds the portfolio at present, is also responsible for children, integration, and youth affairs. It is just too big a brief. There is a structural issue and this is another reason people with disabilities and carers continue to fall between the gaps. Despite the Minister of State responsible for disabilities being a strong advocate, we need a cross-governmental approach.

Last December, Family Carers Ireland released a scorecard that scored the progress made by the Government on delivering on commitments to family carers contained in the programme for Government. The results were damning. Of the 18 programme for Government commitments presented and voted on by family carers, four received a score of regressive, six received a score of no progress, five received a score of limited progress and only three received a score of good progress. None received a score of commitment achieved. With time running out in the term of the Government, which has another year to go at most, it would have been hoped that some commitments would have been achieved.

The work that approximately half a million carers do in this country is almost beyond measure, not just for the people they care for but also for the State itself. The annual replacement cost of the care provided by family carers is in the range of €20 billion – that is, €20 billion per year that the State is saving because carers step up and provide an average of 38.7 hours of care each week. Collectively, this amounts to 19 million hours of unpaid care every single week. Yet, as the scorecard of Family Carers Ireland shows, the Government's commitment to family carers is going backwards instead of forwards. We have not seen an update of the national carers' strategy, nor have we seen the provision for a statutory home care scheme. Both were promised by the Government. The lifetime of the Government is short and getting shorter and we need action now.

Let me give an example of why we need a statutory basis for the provision of home care. It concerns a constituent I dealt with recently who had to switch home care providers. She is a relatively young woman with many care needs that might not seem visible. Some days, she actually gets her hair brushed because she does not have the strength to brush it. She faces very genuine embarrassment in asking a new carer to brush her hair. That carer might be from a new company but it could be a different carer from the same company. This illustrates why we need to determine statutorily what home care companies should provide. This, of course, is on the private, paid-for side. Again, it is another example of how complex and broad the matter is. I acknowledge that the Minister of State present, Deputy Rabbitte, is not the Minister of State for this side of things, but what I have outlined illustrates the genuine impacts of a lack of progress and of not delivering on promises in this area.

There are concrete steps that the Government could take now to aid carers significantly. Serious action is needed in the area of respite. Respite is vital to the continuum of services to support people with disabilities and their families.

Access to appropriate and regular respite helps prevent residential placements, preserves the family unit, supports stability and improves quality of life. Earlier, a friend of mine and I were emailing back and forth in respect of the upcoming referendum. One of the key problems they have in relation to being able to support the care referendum relates to the lack of respite. They do not have a big family to support them. There are no aunts, uncles or cousins who can pitch in. It is a mother and father, and they receive a maximum of three days' respite per year. The referendum on care is in serious doubt because people who have been suffering year in, year out and striving for services and respite heard that the Government was holding a referendum on and was paying attention to this matter, but they were then presented with the wording has been brought forward. Those people feel that they have not been listened to for years and that his is another example of them not being listened to. What has been put forward will not go any way towards solving the real issues they have in the context of supporting carers in the home.

The Disability Capacity Review to 2032, which we have spoken about on many occasions, shows that there is a significant level of unmet need for respite care. During the review period, the number of disabled people receiving respite increased from 3,652 to 5,758 in 2023. However, while this is an increase, the overall figure has decreased since 2018, when the number of people receiving respite was 6,059. Covid had an impact, but we are still not where we were in 2018. There is still a deficit.

A family carer called Lyndsey who lives in my constituency has done a great deal of advocacy on behalf of Family Carers Ireland. She cares for her son, Jack. She has on a number of occasions outlined publicly the costs involved in relation to respite. They range from specialty vehicles for the family to fit Jack's wheelchair to the cost of heating, which has to be on all year round, and the impact of which, particularly over the past couple of winters, we all know. The number of targeted increases in this motion at least point to a foundation level of support that would help towards these costs.

We need to look at carer's allowance and the means test. The means test for carer's allowance needs to be removed. We need to get to that point. We need to look at the base rates for disability allowance, invalidity pension, illness benefit, carer's allowance and carer's benefit. During Covid, there was an uplift in jobseeker's payments. There was an acknowledgement then of what a living wage and a more tolerable income meant to a household. That has not changed. In fact, costs continue to increase. We need to look at the level of payment.

On home care, last year the Labour Party tabled a motion on the lack of funding for the home care sector which, unfortunately, the Government voted down. The reality is that the Government is ignoring a major problem we have with the home care system. We cannot once again find ourselves playing catch-up to fix a crisis that is only getting worse. We have seen it with the housing crisis. We are seeing it with the trolley crisis. We are also seeing it with the home care system. In budget 2024, the number of funded home-support hours was cut from 23.9 million to 22 million, ostensibly to give increased funding to providers to provide people with a living wage, but this has not happened. We know that there is no commitment to pay for travel time. This move has been rightly criticised and labelled as shrinkflation. The Government knew that this move would result in care cramming where, due to demand, care was being rushed and not provided. This is simply unacceptable. There are so many issues for family carers. This is another instance where the Government's failure to implement proper policies has resulted in a diminution in the level of care. It is why the Government received a score of regressive on the Family Carers Ireland scorecard.

In 2007, the State signed the UNCRPD. It ratified the convention in 2018 but has yet to ratify the optional protocol. We heard earlier that the Government will speed matters up in order to get the protocol ratified. I would like to believe that but, unfortunately, it seems that this is a last-ditch, almost desperate attempt to try and gain momentum for the care referendum, which the Government presented in such a ham-fished way to the people. We in the Labour Party want to see that amendment passed. My party leader, Deputy Bacik, is taking on the likes of Senator McDowell and all others in any debates. We would like to see the same level of commitment from the Government to get this referendum over the line. We are not seeing that. This effort in respect of the UNCRPD is only a poor attempt to try to gain momentum for the referendum.

Deputy Holly Cairns

I thank Deputy Tully for bringing forward this motion. It is welcome that the Government has finally made a commitment to ratifying the optional protocol within the next 12 months. Ireland ratified the convention in 2018. We were the last country in the EU to do that and six years on, we have not ratified the optional protocol.

The optional protocol is poorly named. Far from being an optional addition, it is a crucial tool for the implementation of the UNCRPD. All states which signed the convention are obliged to take steps to ensure that disabled people can exercise their human rights. When a state fail to uphold these rights, the optional protocol allows individuals and groups to hold it accountable. It empowers people with disabilities to stand up against discriminatory laws and practices by the State, which is why it is vital to ratify the optional protocol as soon as possible.

Earlier, the Minister, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte, announced the establishment of an interdepartmental group to accelerate the work to ratify the optional protocol. The press release states that this work is being undertaken due to delays at UN level and that ratification had been expected to follow Ireland's first periodic review under the convention. However, these delays are not news to me, and they certainly are not news to the Minister of State. The Joint Committee on Disability Matters received briefings from IHREC in June 2021 outlining the backlog in the UN and the need for the Government to bring forward its plan for ratification. The Secretary General of the Department of children acknowledged those delays at the time, stated that the Department would be very open to ratifying the convention much sooner and outlined that the original timeframe it was assuming that the timeframe for the UN reporting cycle to completed and ratification to be done was the middle of 2022. How is it that in March 2024 we are being told that the work is only beginning, that only last August did the Minister seek external legal advice as to what work needed to be done for Ireland to come into compliance with the convention, that only today is an interdepartmental group being set up and that only now, with only 12 months left in the lifetime of this Government, is the Taoiseach giving a firm commitment to ratifying the protocol while the Minister lists off a to-do list a mile long?

Over the years, we have heard from different experts, including the UN special rapporteur, who have clearly said that the optional protocol can be ratified immediately. Disabled people should not have to wait any longer to be able to vindicate their human rights and hold the State accountable for its failures. The Government must set a date for ratification. Why on earth has it been left it this late, namely, four years in to a five-year term? Why is this never a priority?

Week after week in this Chamber, we raise the crises facing the disability sector. Every time, we get the exact same rhetoric back from Government - that it cares, that it is doing everything it possibly can and, basically, how dare we even question that. If this Government will not invest in disability services when it has a €14 billion budget, then when will it? When does the Government intend to take its responsibility seriously?

The disability capacity review, published in 2021, quantifies the current and future need for support services. One of the key issues highlighted was:

...significant levels of unmet need for disability services, and that changes in the size and age profile of the disability service population will add to unmet need over the coming decade. Addressing demographic change alone would not be sufficient, as the current level of unmet need is not sustainable.

There is a need to spend between €550 million and €1 billion extra each year to meet the needs of the growing and ageing population between now and 2032.

This funding is needed for residential services and supported housing, adult day programmes, multidisciplinary therapy services, personal assistance and respite. The disability capacity review outlined the situation and it was up to the Government to respond. There have been three separate budgets since that review was published and none of them has come close to meeting the funding targets. The last budget only allocated an extra €64 million of additional expenditure for investment in disability services.

In our alternative budget the Social Democrats allocated a total package of €534.1 million for disability services, ensuring adequate funding for the huge capacity gaps that exist in services. The Cost of Disability in Ireland report found that it can cost more than €12,000 annually to have a disability in Ireland. We know it can be well in excess of that amount in many instances. This impacts on the quality of life for individuals and families and it also impacts on people's future prospects.

The Social Democrats have repeatedly proposed a €30 weekly cost-of-disability payment in addition to increases in core social welfare rates. That is because with the cost of disability combined with systemic underemployment and the massive unmet needs in care, it is no wonder we have disgraceful and shamefully high rates of consistent poverty and social isolation among disabled people. Adding to the level of isolation is the completely inadequate approach to accessible pedestrian infrastructure and public transport outlined in the Irish Wheelchair Association's, IWA's, new report, Going Nowhere. The association was in the Houses last week.

It is now more than ten years since the then Fine Gael and Labour Party Government axed the mobility allowance and the motorised transport grant. At the time, the then Minister for Transport, Deputy Varadkar, promised replacement schemes would quickly be launched. However, a decade later, those replacement schemes are nowhere to be seen. To add even further insult to injury, the Minister, Deputy Humphreys, introduced a Green Paper proposing to replace the disability allowance, invalidity pension and blind pension, which are currently paid to approximately 225,000 people, with a so-called personal support payment. Under her plan, disabled people would be subjected to a medical assessment and put into three separate categories. Those with no capacity to work would get a slightly higher weekly payment and the others would be expected to take up training or find a job. This insulting proposal is a carbon copy of a system that was introduced in the UK under austerity measures in 2008. It is the same discredited policy that led to a disabled man starving to death after his out-of-work and housing benefits were stopped. His body was discovered by the bailiffs who came to evict him. Is this really the model that our Government wants to emulate?

Early in February I was contacted by distressed parents, teachers, and principals at the sudden change to the special education teaching, SET, allocations. Jobs were lost practically overnight and vital educational supports for children with disabilities and those with other complex needs were removed from a third of all schools in the country. Changes to special education teaching allocations will be disastrous for children with additional needs. The decision by the Department of Education to completely remove children with additional needs as a criteria for the allocation of special education teaching hours is dangerous and completely illogical. The purpose of SET hours is to provide extra teaching supports to children who require additional supports in schools. For years, these hours have been allocated based on a combination of factors, including the number of children with complex needs in a school. Removing the number of pupils who require, and are legally entitled to, extra educational supports from the criteria for allocating extra educational supports is completely illogical. More than that, it is detrimental to the education, well-being and development of children with complex needs.

Disability services, or their inadequacy, is one of the issues I am contacted about the most from people across Cork South-West and beyond. Sadly, we do not have a rights-based approach to disability; we have a budget-based model. Services, supports and opportunities are decided based on Government budgets that do not allocate enough funding and they are not based on human rights. In a rights-based system, when you are entitled to a service, you receive it - from SNAs to carers, respite, accessible transport, and independent living accommodation. Ireland is so very far from this. Disabled people face an uphill battle from the day they are born. It is outrageous that often their biggest battle is with the State when they try to access basic services, such as an assessment of need, essential therapies or a school place.

Deputy Richard Boyd Barrett

I wish to share time with Deputy Barry.

An Leas-Cheann Comhairle

Is that agreed? Agreed.

Deputy Richard Boyd Barrett

I will have seven minutes and he will have three minutes.

I just got off the phone from a call with a friend of mine who is a wheelchair user and disability rights campaigner. I asked him what I should say in this debate. He asked me to express his absolute outrage at the way the Government has handled the referendum. At this point, he is going to vote no on the referendum on care. He is doing that as somebody who voted for repeal and marriage equality. He is passionately supportive of women's rights and women's equality but he feels absolutely failed and insulted by the fact the Government has not included in the referendum rights for people with disabilities and indeed for carers. He feels the phrase "strive to" is an insult which means nothing and he has no trust in the Government or that it is - to use what I think is the Taoiseach's phrase - a stepping stone towards anything from the point of view of people with disabilities.

To support what in my opinion is his justified anger, he pointed out that, on Friday, some people with disabilities still may not be able to access polling booths. Even now, that is still a reality in some cases. He pointed out he has been waiting for a service for his wheelchair since November. As he put it, as a wheelchair user, his wheelchair is his legs, yet he has been waiting for the service since November. He was particularly enraged by Leo Varadkar's performance, which I did not see, but it was commented on today. Deputy Barry mentioned that it was on TV. He talked about the fact that if somebody in his family needed care, it would be the family members who would do it. As my friend pointed out, that is all very well if you are getting paid a couple of hundred thousand euro a year, and perhaps such people have the resources to do that, but huge numbers of people in this country do not have the resources to do it. The State has an obligation to guarantee the rights of people with disabilities. In a way, this is the problem with the referendum. I said to him, and it is still the case, that I will vote yes with no enthusiasm because it at least removes an obnoxious reference to a woman's place being in the home, but I totally get his anger at the fact it has totally failed people with disabilities and carers. Indeed, it has insulted them and enraged them.

That is a spectacular failure by the Government to have succeeded in doing that. My argument is a difficult enough one to make because the Government has made a bags of it. What is common with the existing Constitution is that it did less than nothing for women. In fact, it failed women disastrously, and it failed people with disabilities for the entire history of the State, but what people were expecting was something better and a clear commitment to rights.

Instead, what we got, which was echoed in the Taoiseach's words, is the old reliance on the family, whether it is carers or women, and it is overwhelmingly women, to pick up the bill for the failure of the State to provide the resources and services and guarantee and enshrine the rights of people with disabilities and carers in the Constitution. As a result, the Government is risking a defeat on this. Tragically it is pitting two groups of people who both want to fight for progressive social rights in this country for women and for people with disabilities against each other. That is what the Government has succeeded in doing because it did not want to commit to rights in the Constitution. That is the latest instance of the failure to legislate for rights generally.

This is not just about the Constitution, although people take the Constitution seriously, but about the failure of the Government to legislate and provide the services to guarantee equality for people with disabilities, most spectacularly instanced in the failure to ratify the optional protocol which would make the Government legally accountable to ensure equality for people with disabilities. Of course, that is coming on the heels of an 11-year fight by disability campaigners and people with disabilities to get the UNCRPD itself ratified after the Government dragged its heels. Now the Government still does not want to ratify the optional protocol. At this stage, there has to be a clear commitment. We are making one and we will have a Bill before the Dáil in the next week or so that demands another referendum that will put rights for people with disabilities into the Constitution. That is what the Government should have done this time but it failed to do. That has to be a commitment and we need dates for the optional protocol. We also need the services and the resources because, as my friend said, living with disability in Ireland is a nightmare. That is what he said. That nightmare has to be ended. The existing Constitution has certainly failed people but so has this Government and therefore people have lost their trust in it.

Deputy Mick Barry

I have decided to change my vote in the care referendum from a yes to a no and I want to explain why. I called for a yes vote originally because I wanted to remove sexist language from the Constitution. I saw the religious right and the far right mobilising for a no and I did not want to give any class of a boost to those forces. I criticised the wording for merely striving to support care rather than guaranteeing it. I also criticised the wording for merely making reference to support for care in the home but staying silent on the question of State support for care outside of it.

However, in the course of this referendum, something has changed and I think what has changed is very significant. Angered by the Government’s failure to go beyond “strive” and to make mention of support outside of the family, opposition to the amendment began to develop among people with disabilities and carers. People who had faced years of State neglect, who had had to fight tooth and nail for every small thing, decided to draw a line in the sand and put the issue of their rights onto the agenda. By the end of last week, this opposition had grown to a point that I think it would be fair to describe it as a rebellion within those communities against this amendment. I think if the amendment is now defeated by the momentum generated by this revolt, the rejection will have a forward-looking character rather than a backward-looking one.

Generally, I do not care much for people who change their mind as often as they change their clothes. I am not by instinct a flip-flopper. However, I believe a good public representative needs to have not only a mouth on them but a good pair of ears. They need to be able to listen. After listening to disabled people and to many carers, I and my colleague Ruth Coppinger decided to join their call for a no vote in the care referendum. I pledge that if the care referendum is defeated, I will work with disabled people, carers and others for a new referendum, not just to delete sexist language but also to put into the Constitution an amendment along the lines proposed by the citizens’ assembly and rejected by the Government. I will conclude by reminding this House what the citizen’s assembly called for:

The State recognises that care within and outside the home and family gives to the State a support without which the common good cannot be achieved.

The State shall, therefore, take reasonable measures to support care within and outside the home and family.

I would say to vote yes on the family referendum and no to this care referendum.

Deputy Peter Fitzpatrick

While the upcoming referendum on care in the home aims to provide constitutional recognition for Ireland's family carers, the Governments needs to provide much more substantial supports to both carers and those with disabilities. Financial supports for people with disabilities and family carers are inadequate and fail minimum essential standards of living tests. The Department’s own cost of disability report published in 2021 shows the extra cost in Ireland of being disabled ranges from €9,000 to €12,000. This is before a disabled citizen pays rent or tries to feed themselves. The current disability allowance is €11,440 a year and barely meets this additional cost of disability itself. Disability allowance should be a universal, non-means-tested payment. These payments do not come close to covering the costs, nor do they provide access to the additional supports required by carers.

Family Carers Ireland reported that 1,484 carers care for a total number of 1,984 people, representing a range of caring situations. These are parents caring for a child with an illness or disability, those caring for an adult, carers of older people and those caring for multiple people. Family carers provide an invaluable contribution to our community. One in eight of our population is a family carer, and as I have stated in this House many times, they provide a critical service the State does not provide. To be above the poverty line you need €380 a week, yet around 250,000 paid carers are recorded as having second jobs to survive. For many people with disabilities and their carers, the rising cost of living and an insufficient allowance have meant slipping beneath the poverty line and struggling to make ends meet. The weekly disability allowance of €232 does not cover the additional costs of living with a disability. We must look at increasing the disability allowance, invalidity pension, illness benefit, carer’s allowance and benefit, and the annual carer’s support grant. Carers and people with a disability need access to respite, to better funding and to better services. We must accept and realise that the €55.6 million in additional new development funding which was provided for disability services in budget 2024 is not adequate to deliver the measures contained in the disability services action plan. Just look at the ongoing scoliosis surgery crisis. Disabled children have been left for years on waiting lists for spinal surgery and, as a result, are experiencing complications almost unheard of in other EU states. They then require more complex surgeries and often unplanned emergency interventions, which lead to negative life-limiting and life-altering consequences.

Disability services for both children and adults are failing not only in my own constituency of County Louth and east Meath but countrywide. There is a crisis in the recruitment and retention of physiotherapists, speech therapists and occupational therapists. Tens of thousands of disabled people and people with intellectual disabilities, neurodiversity or mental health issues remain on waiting lists. We must do more to provide additional capacity and supports to both those who need it and their carers. The Government must commit to a multi-annual funding plan for delivering the disability action plan and an updated national carers strategy, specifically in relation to assessments of need, therapy supports, wait list reduction, personal assistants, home care assistants, community services, assistive technology and respite. We need to commit to a human rights approach to disability and caring.

Deputy Verona Murphy

I never correct Deputies but I do think it is important to reiterate that the Constitution does not say that a woman’s place is in the home. I will leave it there.

This week and this past month, I have been advocating for two ladies of 85 years who are entitled and eligible for a home care support package. One lady is in receipt of some hours five days a week, but she is now entitled to and due seven-day care. Her family are currently looking after her and we cannot get an increase in the service from five days to seven. That same issue applies to the next lady who is also 85 years.

These are women who, within the meaning of the Constitution, provided care in the home for their families. Their families are struggling to do the same.

We announce with great gusto in this House that we are going to throw money at many services and we are going to do this, but it does not happen. It is the delivery we need to focus on and we are not able to deliver the services. The HSE in CHO 5 has covered off its part by advertising or putting it out to private providers once a week, every week since 2 February, looking for someone to cover these hours. It just gets back a "No". There is no onus on it to recruit. As a matter of fact, those in the CHO tell me the recruitment ban is affecting them, when HSE CEO tells me that recruitment ban does not trickle down to home care support services. Somebody has it wrong.

When I was elected to this House four years ago, the Minister of State will remember a conversation we had with the Ceann Comhairle in which I said there was no joined-up thinking with education and the provision of services going forward. That was four yeas ago and the list has grown exponentially. We have more than 274 children with no service in the CDNT network in New Ross. There is no occupational therapy being given, there is no speech and language therapy being given, and there is no dietician. It is such a failure. We are going backwards at all times.

If we want to do something meaningful, we should not be spending €20 million on ambiguity, which is what this referendum will deliver regardless. The wording is ambiguous. Why not invoke and ratify Article 12 of the UN Convention on the Rights of Persons with Disabilities? Why not give them the rights if we want to do something meaningful? If we want to spend €20 million, make it meaningful and remove the actual means testing for these carers who are in the home. We do not need wording in the Constitution. It does not matter because most of the carers are women. Nothing will change. That is the difference. There are loads of meaningful measures we need to join the dots on. There is no point sending a family a letter to say they are eligible for a home care support package and that they meet the criteria but we have nobody to deliver it. It does not say that in the letter. It just says that the resources to meet the requirement are not there, instead of saying we have not fixed that problem in four years, or in the four years I have been a TD, because that is what it means.

Deputy Seán Canney

I commend Deputy Tully and Sinn Féin on bringing forward this motion. As a member of the Joint Committee on Disability Matters it is important that I focus in on a few things. We have looked for the ratification of the UN protocol. We issued a report on that. I was disappointed this week to see an announcement that some other report will now be prepared by Government. That will be brought before it later in the year, and we will end up with a situation where it will look to see if it is in a position to bring this in. Bringing it in is part of the programme for Government. It is running out of time. I ask them to get on with doing this before the Government ends its rule.

We are talking about carers and it is important. Everybody gives a story about what is happening in each constituency. People come into my office from all over the constituency who are crying out for help to try to keep somebody in their home. They are looking for home care help. They are looking for assistance so people do not go into long-term nursing care. The cost to the State is very high when you go into a nursing home. If you can keep somebody at home, it is an awful lot less, but there seems to be a disdain for trying to support carers. We will talk about this more in the coming weeks, but the first thing we need to do is look at getting rid of means testing for carers. That is it. We should make sure that anybody caring for a family member or somebody else is treated with respect and that the investment of their time is matched by investment from the State.

In Tuam before Christmas we had people protesting outside the recently opened CDNT 7 offices because we do not have enough staff. The reality is that parents are being told there are so many funded positions within that unit. In the space of two months they got two different spreadsheets with different numbers of people funded. We have not got an explanation yet as to what has happened. What it does show is that there is a reduction in the number of funded positions and there are therefore not as many vacancies. It seems to be a cynical approach to try to hoodwink parents and it is something we have to look at very carefully.

Another thing has crept into the middle of this, and I do not know where it came from, is special education teaching hours, how they were drafted and the criteria by which they are to be implemented. AsIAm came out today and said it is totally wrong that families with the lived experience were not consulted when these new criteria and circulars came out. The only way they can now be reviewed is through individual schools and not with the families. At this time we have to say we have regressed further, we have put the people with disability further back in the queue, and we have put carers way back in the queue. It is time for a wake-up call on this.

Deputy Carol Nolan

In the referendum we will vote on this Friday, there are absolutely no new rights for carers or disabled people. The fact that legislation is being rushed and guillotined is also of serious concern. It is an insult to the intelligence of people and the electorate. A total of €20 million of taxpayers' money is being lashed out on this referendum. That €20 million could have gone into helping disabled people, such as the 1,000 people awaiting a primary cert and who are deemed not to be disabled enough to gain a primary medical certificate, even though some of these people may well have lost a limb. It is shameful what the Government is doing - absolutely shameful. Carers have no solid guarantees. It is important the electorate knows that and a resounding "No" is sent to this Government, because I think it is the only way it is going to listen. It is to be hoped that will happen on Friday and people will look into this further and not fall for the misinformation.

I have constantly highlighted the crisis within the children's disability network teams in my own constituency of Laois-Offaly. Again, it is another shambles. I have constantly highlighted in this House that there are children without proper, basic services. There are children being failed. There are children being left behind. There are families frustrated, upset and distressed. Many families have told me they are tired and worn out from having to fight for everything. Many of our teams in Laois-Offaly, which is in the CHO 8 area, have had vacant posts for so long now. Why is that? Why are children being constantly failed? Why lash out €20 million on a referendum, which is a shambles, and then fail these children, fail carers and fail disabled people? The HSE disability services have responded to my engagement and revealed just how stark the crisis is across all nine CHO areas, but particularly in my own area of CHO 8. I ask for that to be addressed.

Deputy Michael Healy-Rae

I thank Deputy Tully and Sinn Féin for bringing forward this important motion tonight. Relaxing the carer's allowance means test and increasing the disability allowance, invalidity pension, illness benefit, carer's allowance and benefit, and the annual carer's support grant is of paramount importance. I believe that taking care of people in their own home is the best place you can have them. The money it costs to give somebody a proper allowance to take care of those people at home is important. Being a carer or a person with a disability in Ireland is not easy. We need the Constitution to recognise that all these people should have rights to State services and resources, not patronising sleights of hand and pats on the head. Parents have already had to go to court to vindicate their children's rights. A change of wording in the Constitution giving pure lip service is just another act of virtue signalling by an out-of-touch Government.

There are other issues that have to be looked at. For instance, the primary medical certificate that entitles a person to an allowance to have adjustments made to a disabled person's car is so restrictive. I will give the Ministers an example. If you are totally blind and want to be a disabled passenger, you cannot be one.

It is not allowed for in the rules and regulations. Blind people are completely discriminated against. That is ridiculous. I am not blaming the Ministers. I am saying that successive Ministers over the years have ignored that, and it is something that should be looked at. Really, this is about taking care of the carers - the people who give care to our older or disabled people, whether they have intellectual or physical disabilities. Those people should be treated properly.

Deputy Richard O'Donoghue

It goes without saying that the axis of support for persons with disabilities is failing due to a lack of funding and prolonged periods of waiting for appointments. The lack of funding in the budget was one thing, but this proposed amendment causes further insult and takes responsibility away from the Government and its commitment to provide for, protect and care for the most vulnerable people in our society. The upcoming referendum seeks to replace Article 41.2 with Article 42B. At first glance, the new provision looks pretty but that is all it is it. It lacks substance or a foundation for protecting the person who needs protection most.

The ambiguity of the proposed wording calls for serious reflection. It provides that Governments will "strive to support". To me, this is simply an excuse to use in the future. I know the Minister has forgotten this, but there is a difference between striving for and doing. I, like others, believe in doing and this needs to be done right now. The Government's position on this is lacking, as shown by the two insults it calls progressive amendments. I hope the vote result is "No". I hope people realise what the Government is doing to distance itself from its responsibility to care for the most vulnerable in society. When it comes to election time, I hope people remember that and make sure we never again have people who treat the most vulnerable with such disrespect.

Deputy Michael Collins

As we stand on the precipice of this Friday's vote, Ireland's fate hangs in the balance with a pivotal referendum that could redefine the very fabric of our society. It centres around replacing Article 41.2 of the Constitution with Article 42B. This proposed article recognises that care provided by family members to one another forms a bedrock upon which our common good rests. It acknowledges the invisible threads that tie us together, namely, love, compassion and duty. Therein lies the crux of our deliberation, however. We, the concerned citizens, stand united in urging a resounding "No". The reason is that the phrase "shall strive to support" leaves room for ambiguity. It lacks the robustness needed to hold the State accountable for the care of those who depend on us. It is a hollow promise, a mere whisper in the wind that fails to genuinely uplift carers or those in need.

The proposed amendment serves as a stark example of a Government that pays lip service to pressing issues. A "Yes" vote would unwittingly endorse this inadequacy, but we know better. Unpaid family carers know better. These unsung heroes navigate the brink of services promised by the Government, the HSE and the National Council for Special Education, NCSE. They witness the chasm between theory and practice. We need language that mandates unwavering support for carers, not vague assurances but a resolved commitment beyond the next election cycle. We must hold institutions accountable. Trusting the process is a luxury that carers cannot afford. Engaging with the HSE and other State bodies often feels like scaling mountains only to find barren peaks devoid of support. Let us not forget the horror stories about bureaucratic hurdles, endless paperwork and the exhaustion faced by families struggling to access care for their loved ones. The proposed wording places no obligations on the State. It shifts the focus of care to our homes, burdening families disproportionately. The HSE and other bodies will be allowed to wield it as a shield against providing essential support.

Deputy Danny Healy-Rae

I, too, thank Deputy Tully and Sinn Féin for bringing forward this timely debate. If the Government really wanted to help carers and people with disabilities, it could have clearly done so in the budget. The disability capacity review tells us that between €80 million and €90 million was needed yet the Government only provided €64 million. The €20 million it is splashing out on this referendum would have made the difference this year.

The Minister for Social Protection, Deputy Humphreys, speaking on behalf of the Government today, and I am not blaming her personally, said that if the people gave a "Yes" vote, people with disabilities would get more. It is shameful to try to bribe the people of Ireland like that and to stoop so low. People are worried that if this part of the referendum passes, it will reduce the State's responsibility towards patients and transfer responsibility back to the family or extended family. The word "strive" in the text is very dangerous. It does not guarantee anything. Parents with grown-up children with physical and mental disabilities have one worry, namely, who will look after their children or child when they pass on. The "Yes" vote would not strengthen their hand to do more. That is shameful.

This referendum also seeks to change the definition of the family and the lead part of the Constitution relating to mothers' duties in the home. We must help them and the elderly to stay in their homes for as long as possible. We see every day that carers are not being provided for people who want to stay in their homes. After giving all their lives to the country and the families they reared, it is shameful that we cannot provide home help for people to stay for the last few days of their lives in the homes they kept together all their lives. This is what we are doing, however.

An Cathaoirleach Gníomhach (Deputy Mattie McGrath)

Go raibh maith agat.

Deputy Danny Healy-Rae

We are asking the people to vote "Yes" for something that is going to hurt them. The people will not do that. I am asking the people out there tonight-----

An Cathaoirleach Gníomhach (Deputy Mattie McGrath)

Go raibh maith agat, a Theachta.

Deputy Danny Healy-Rae

-----to vote "No" to both proposals - "No, No".

Deputy Richard O'Donoghue

Hear, hear.

Deputy Marian Harkin

I thank Sinn Féin for bringing forward this motion, which takes an overarching view on the absolute need to provide greater supports to people with disabilities and carers. It is also very interesting and timely to see that today, IBEC issued a detailed report entitled Better Care Better Business. Many of the recommendations in the IBEC report are very similar to those in the Sinn Féin proposal. I note the Government has not opposed the motion. I wonder why that is the case. I might come to that later, but there seems to be broad acceptance that many of the proposals in this motion are also contained in the IBEC report. Given that the Government is not opposing the motion, it therefore makes sense that the proposals would be implemented.

As somebody who either chaired or co-chaired the European Parliament Interest Group on Carers for 14 years and co-chaired it here in the Dáil, and as an honorary member of Eurocarers, I have always said that we need to see a paradigm shift in how we deal with care in our society. Care is not an add-on. Care is central to our lives, from the very beginning to the end. Society, as we have constructed it, could not function without care provision being at its core. For too long, care happened behind the closed doors of the family home, with little support, largely invisible and hugely undervalued. While that has changed to some extent, the burden of care still falls very heavily on families due to inadequate financial supports, respite provision and services.

In the few minutes I have left, I will concentrate on two or three issues, the first of which is the need to provide a statutory home care scheme similar to the fair deal scheme. This was promised in the programme for Government. Where is it? Why has it not happened? People want to live in their own homes for as long as possible. That care needs to be placed on a statutory footing as an entitlement. That is essential. I do not know what the figures are but in my opinion such a scheme would be more cost-effective and probably cost the State far less than the fair deal scheme.

Second, the carer's allowance should never be means tested. A family carer in County Sligo described the process to me many years ago as the "mean test". Support for carers should be based on the care they provide - full-time care to a person who needs full-time care - and not on the income of the household. It is anti-woman, anti-man and anti-family.

We also have the situation where families are granted care hours of a half hour in the morning and again in the evening. They often wait ages to get it. Then they do not get what was allocated. If a carer is out sick, on holidays or not available, nobody turns up. As far as respite is concerned, my office staff inquired about it today, by chance. Does the Minister know what they were told? They were told that because of the winter plan, there are no respite beds for the months of January, February and March. That is incredible but this is what my office was told. How are families supposed to manage this? They were specifically told it was because of the winter plan and yet carers need respite and very often do so in emergency situations.

Finally, I asked the Minister earlier why he has not opposed this motion from Sinn Féin. Obviously, there is a lot of good stuff here that all of us would support but I think it is partly due to the fact that we are having a referendum on Friday. What matters is not "striving" to deliver, because that is a word that is not justiciable and will be meaningless in the Constitution. What matters is the delivery of services, respite and support. That is what matters to family carers and nothing else. Tonight, we see the Minister does not oppose the many really good solutions here. However, up to now, he has not delivered to the extent he needs to. Many people watching and thinking about how they are going to vote on Friday will say that not opposing and coming forward with proposals tonight is too late.

Deputy Catherine Connolly

I always start by thanking Sinn Féin for bringing forward a motion and I do so again tonight. I am also grateful for the opportunity to speak. However, my gratitude stops there because the elephant in the room is being ignored. Many TDs and the Ministers have spoken about the upcoming referendum, which is taking out two parts of Article 41 and replacing it with an entirely new article that gives absolutely no enforceable rights. It confines caring to within the family and it seeks to recognise the care that family members give to one another by reason of the bonds that exist between them. I cannot describe anything weaker or worse with no enforceable rights. Even worse than that, it seeks to replace two parts of Article 41. Again, I describe myself as a mother, a female TD and a rabid feminist but I will take away the word "rabid" and say "feminist". We look at this article which is all of the time being misquoted and I find myself in agreement with Deputy Murphy. It states "the State recognises that by her life within the home, [she] gives to the State a support without which the common good cannot be achieved.". That refers to "woman". In the second part, it goes on to say "The State shall, therefore, endeavour to ensure that mothers [so we have "woman" and "mothers"] shall not be obliged by economic necessity to engage in labour to the neglect of their duties in the home." Do I agree with those words "to the neglect of [her] duties" outside the home? I do not. Do I agree that it is specific to mothers and women? I do not. What has happened here is that an article with a concept that is excellent, namely, that no mother should be obliged to work outside the room because of economic necessity, is having a line put through it and it is being replaced with waffle that gives no enforceable rights. Worse than that, caring is put within the family and the State obligation is ignored. It is truly shocking and disingenuous and that all the parties have bought into this is beyond my comprehension.

There have been various entities that looked at changing this Constitution in the past. The one in 2006 was the one that appealed to me most. There have been many proposed changes since 1993. In 2006, if the Minister cares to look at it, it was suggested that those words would be replaced with "parent". My preference would be for "mother or father". We should keep that with modern language without a reference to duties, while recognising the importance of parents in a home and the parental work that they do. A parent's work is not the same as a carer's work, although of course they overlap. I refer to what the Minister should have done. I hope this goes down on Friday, not to score points with the Government but in order that we can come back and change that article. We can keep the obligation that no parent will be obliged to work outside the home and separately insert an article that really gives rights to carers and recognises the importance of carers for our society and the billions of euro they save the economy.

I will finish by looking at the Supreme Court case that is pending and of which the Government was fully aware. It made arguments in the High Court against the mother who has to go to court because of what Sinn Féin is now talking about, namely, the carer's allowance that is means tested. As quickly as I can, the case involves a young man who has Down's syndrome and epilepsy with epileptic seizures and who suffers from autism spectrum disorder and developmental delay. He suffers from hypothyroidism, hyperactivity, behavioural issues and repetitive head-banging, which is a condition that must be distressing. I am running out of time. His sleep is also chronically affected. The High Court judge who held against the mother stated she was quite satisfied that it is enormously demanding to care for this man and that the reduction of the full rate of carer's allowance by €85 per week has had a profound adverse affect on the first applicant and caused significant personal and financial strain to her. Bun agus barr an scéil, the High Court held against her. She was on a reduced carer's allowance because it is means tested and her partner earns. The Minister is bringing in a constitutional amendment and he is ignoring this. The case has gone to the Supreme Court. What has the court said? It has allowed this mother to skip the Court of Appeal and go straight to the Supreme Court because she raises issues of such importance. I will quote precisely, so I am not accused of over-exaggerating. It stated "The court further notes that the present case raises issues of systemic importance for the carers of severely disabled children". This mother has to fight the whole way to the Supreme Court. Unfortunately, she has a difficult case because it is on regulations. However, she raises Article 41, the very article the Minister will remove if the proposed change is successful on Friday. If that article is removed, I do not know what the Supreme Court is going to do regarding that because the case is partly based on the article that gives rights. I will take my chances with the court regarding the modern interpretation. As Ms Justice Susan Denham said 23 years ago, as did the former Supreme Court judge, Mr. Justice Barrington, and as many other judges who recognised that no suitable case has come before them in relation to the direct effect of this article, which has surprised them, they will interpret it as a father or a parent having no obligation to work outside the home.

Deputy Violet-Anne Wynne

First, I welcome today’s news on the establishment of the interdepartmental group on the optional protocol and I hope this will speed up the ratification as it is now long overdue. We remember the delays in the ratification of the UNCRPD in the first instance and the 11 miserable years that went by there. Last year, there were 5,500 family carers who did not receive the carer’s allowance but did receive the carer's support grant, 319 of whom were in County Clare. We must phase out the means test for carer’s allowance. It is time we give family carers the respect and the recognition they deserve. We therefore also must increase the carer’s allowance in line with Family Carers Ireland's plan for a participation income. As the Minister knows, unpaid family carers save the State on average €20 billion per year, which is the equivalent of a second HSE.

I want to briefly speak about reform also. I was delighted to join my friends in the Clare Leader Forum last Friday to launch their book, We Are Human Too. The experience of disabled people must be central to how disability policy is shaped in this country. They must be at the decision-making table. Disabled people in my constituency of Clare have made it clear that they outright reject the reforms proposed in the Green Paper on disability. As the Minister well knows, one cannot plan for disability services without the voices of the disability community at the table. On that note, upon seeking clarification in respect of polling stations and accessibility, I was surprised by the response I received that points to there being only one polling station in County Clare that is currently inaccessible. In County Clare, I am aware of the desperate need for four respite homes for people with disabilities.

It is a matter of utmost urgency as at a recent UHL briefing it was explained to me that those who cannot avail of respite are actually ending up in the emergency department. As the Minister also knows, it is the only model 4 emergency department in the mid-west region and I would love the opportunity to discuss this matter with him at a later date.

On personal assistant hours, it is essential that the Minister commits to reforming the distribution of PA hours to enable parity of services across all regional health areas. Personal assistants should be helping people across Ireland to meet their social, personal and employment needs. The Minister of State, Deputy Rabbitte, previously spoke at length about how she agrees with that but how many of those 70,000 PA hours committed to last year have actually been filled because of the lack of availability of people to fill those positions?

Minister for Children and Youth Affairs (Deputy Roderic O'Gorman)

I thank all the Deputies for their contributions on the large-scale reforms we all recognise are needed in the areas of disability and care. I also thank them for speaking to the individual constituents and the extremely difficult individual cases that all of us as constituency TDs face daily, and our knowledge that the entire system needs to do so much more for people with a disability.

It is always a bit difficult to speak in detail in reply to a Deputy when they are not in the Chamber but I want to touch on some of the points made by Deputy Connolly regarding the referendum coming up on Friday. In particular, she referred to a case before the courts. It is a case where the High Court clearly held that the existing Article 41.2, which may be deleted if there is a "Yes" vote on Friday, has not delivered anything for the family in that particular case. The High Court held very clearly that case did not benefit that family in that situation.

Deputy Connolly was critical of the proposed Article 42B, which will place a new legal obligation on the State to strive to support care within the family, yet defended an article that locates care of children as a role of mothers, and only married mothers. Let us remember in the definition of Article 41.2, it is the married family we are talking about whereas the new language will talk about care, including care of parents for children not just by mothers but by dads as well, care for elderly parents and care for those with a disability. The existing text talks about only mothers, and in the context of Article 41.2 only married mothers.

Deputy Connolly has made this argument in the past that she will take her chances with the existing Article 41.2 and that she does not agree it is restricted to mothers and women, even though the very clear text of Article 41.2 states "mothers" and "women". She said that the Supreme Court could interpret it in a different way and it could. There is a potential there. I will speak to two cases in recent years - one is now a bit old but one was very recent - where the Irish courts examined the provisions of Article 41 and have had the opportunity to reinterpret things or to broaden things out. The first case is Zappone v. Gilligan case from 2006 where a former Minister and her late wife sought to have the constitutional definition of "marriage" in Article 41 redefined and broadened out to include same-sex couples. In that case, which was a High Court decision, Mr. Justice Dunne made it very clear that it was not the court's role to redefine the institution of marriage in Article 41 and that it was a job for the legislators or indeed for the people. I remember I was hopping mad when that judgment came out but that was the decision. The court said, "No, it is not our job to redefine."

Then four weeks ago the in the O'Meara case, Johnny O'Meara asked the court to redefine the term "family" in Article 41 to say that it should not just be the married family even though that is what the text of Article 41 says, it should be other families as well. This is so instructive. This is a recent case. This was four weeks ago in our Supreme Court and the majority, five, of the seven judges in the Supreme Court said, "No, we will not define family to include non-marital families." Reading the judgments, particularly that of the Chief Justice, we can see they were uncomfortable and that very dated notion of the family that Article 41 speaks to now is not their preference. However, they were very clear that redefining the "family" in Article 41 is a job for the people through a referendum. Deputy Connolly can take her chances that one day a court will redefine "woman" as also being "man" and that it will define "mother" and "father" but the very clear evidence from the Supreme Court only four weeks ago is that it will not take that chance. The courts will interpret the Constitution as it is written and the job of changing the Constitution and broadening it out, whether in terms of care or the family, rests with the people. We have that opportunity on Friday. We have an opportunity to broaden the definition of "family", to remove outdated, sexist language and to bring in a new provision centred on all the different dimensions of care and placing a new legal onus on the State to do more. We all know, and I acknowledge very clearly as a Minister, that we need to do more. This Government needs to do more and future Governments need to do more as well.

A number of Deputies spoke to the UNCRPD and the optional protocol, including Deputies Tully and Cullinane. The Taoiseach, the Minister of State, Deputy Rabbitte, and I have all stated our very clear goal that we need to ratify the optional protocol. We know that a body of Irish law right now clearly is not compliant with the UNCRPD. We have changed one of those non-compliant laws. We got rid of that outdated notion of wardship and brought in the Decision Support Service. In terms of the steps we are taking to put us in the position where we can ratify the UNCRPD, we have already made life better for people in Ireland who have limitations to their capacity. We have already improved things for them through that change.

We will have to make other changes and that is why last year the Minister of State, Deputy Rabbitte, and I got our Department to commission an audit of those laws where we are clearly in breach of the UNCRPD. We decided at Cabinet today that this audit - which is just about finished, we currently have a draft and will get a completed document soon - will be brought to an interdepartmental group where the top civil servants from different Departments will have to take responsibility for the changes that need to be made in legislation or in policies within their own Department. That will be reported back to Cabinet and will allow accountability in the delivery of those changes and Deputies will be able to see those changes come through in legislation. I reiterate that our goal is to get the UNCRPD ratified.

In the couple of minutes remaining to me I will speak to those elements specifically within my remit and that of the Minister of State, Deputy Rabbitte. I will speak particularly to the disability action plan. The Government is committed to the expansion of specialised services for persons with disabilities. Last December, we published the Action Plan for Disability Services 2024-2026. That was informed by the capacity review that the Department of Health previously had commissioned setting out where the current gaps in services are and where the new pressures will be on services, looking at demographics, our ageing population and the fact we have significantly more young children presenting with conditions on the autistic spectrum.

The motion calls on the Government to increase access to specialist disability services, which is something the Minister of State, Deputy Rabbitte, and I agree with wholeheartedly. We are ambitious in using the Estimates process in how we grow access to specialist disability services. We increased the budget for disabilities by more than €200 million this year. Of that, €75 million was put directly into new services and a significant amount of that new investment was looking at specialist disability services. There was €20.5 million for new residential places, €15 million for additional respite services, €18.2 million for new day services places for school leavers and €8.5 million specifically for children's services. We are looking to roll out the kind of initiatives that the Minister of State, Deputy Rabbitte, has spotted as she goes around the various CHOs and as she talks to people on the front line, such as the assistant therapy grades. There was almost €12 million for other developments such as 80,000 extra PA hours and the neurological supports that the Minister of State, Deputy Rabbitte, has championed. There are also discrete services that she mentioned earlier on that are making a very meaningful impact on families and children with disabilities in particular within their own communities.

They are services that are not happening at a national level but are services the Minister of State has seen making a difference through her engagement at local level. These are the types of services that we need to support.

The biggest challenge we face is that of workforce, recruitment and retention. Every Deputy has spoken eloquently about the pressures on CDNTs and that a 34% vacancy rate is such a problem. Again, the Minister of State, Deputy Rabbitte, has focused on that in terms of a recruitment campaign. She has been working with the HSE to drive a recruitment campaign that took place over Christmas. Some 500 people expressed an interest. Therapists, occupational and speech and language therapists, coming back for Christmas expressed interest in taking up roles specifically within the CDNTs and not in any other part of the health system. As the Minister of State, Deputy Rabbitte said, interviews are taking place in the community health organisations all over the country to convert those applications of interest into roles, into therapists, and into people who are delivering interventions, services, therapies and assessments of need in our CDNTs around the country. It is the additional staff in these CDNTs who will make the biggest difference to families around the country. I thank the Ceann Comhairle for his indulgence.

Deputy Rose Conway-Walsh

At the outset, I thank my colleague, Deputy Pauline Tully, for bringing forward this motion. We certainly need a more humane approach for people with disabilities and carers. We need to work to make a real and lasting difference in people's lives. I know there will be lots of carers and people with disabilities looking in tonight, and as often happens, the picture that is painted is so different from the picture on the ground. The Minister and Minister of State know that because the same things cross their own desks with regard to the struggles people have in accessing the most basic of services, particularly in rural areas, where you have to try to access services, where you do not have transport, and where there are other barriers in the way as well.

On privatisation, I note where the Minister talks about private supports. People cannot afford them, and that is the problem. If you are referred on to private services, that is okay if you have the money but if you do not, you are left without it. A measure that the Government could do immediately would be to relax the carer's allowance means test, and to increase disability, invalidity and illness benefit, the carer's allowance and the annual carer's support grant. The level of scrutiny that carers are under in seeking the very most basic support is absolutely unacceptable. On the one hand, they are watching golden handshakes and huge exit payments being given to people and on the other hand, you have carers who are scrutinised within an inch of their lives in the most appalling ways. The microscopic assessment that is done of carers goes on and on for months. Nobody is saying to give something to somebody who is not eligible but being asked questions like, "Does your son still have autism?", or "Do they still have a lifelong disability?" is just crazy when they know the situation. I ask the Minister and Minister of State to please look at the carer's allowance, and ensure people get it in a timely way.

Deputy Louise O'Reilly

Gabhaim buíochas leis an Teachta Tully ar an rún seo anocht. I had intended to reference the hurtful, tone deaf and quite frankly disgraceful comments made by An Taoiseach recently in the media but I will not dignify those comments by repeating them. What I will say is this. We, in Sinn Féin, see the importance of the State and the role the State must play in supporting carers and people with disabilities. It is a very great pity that the man who heads the Government does not see the same.

Government policy is writ large on the stressed-out faces of the carers I see in my offices in Balbriggan and Swords day in, day out. Many of them will tell you they are exhausted from fighting. They will tell you it is a battle a day to simply stay afloat. It is not about extras because there are no extras on offer. They know that. It is about the absolute basics. They are worn out and exhausted from fighting. It is a battle a day for them.

That is why we need a rights-based approach, and that is the rights-based approach that Sinn Féin has proposed this evening. I note the Government is not opposing this motion but neither is it supporting a rights-based approach. Let us be honest about it. I would respectfully suggest that if this Government is not interested in a rights-based approach for people with disabilities and their carers, it should make way for a Government that is.

In the few moments remaining to me, I will reference the IBEC report Better Care, Better Business. I encourage everybody to read it because the statistics in it are quite stark. The one that jumped out at me was about personal mental health, where 63% of carers reported that this is the biggest negative impact to caring responsibilities. This is a survey of people who are working in the formal economy. When they are finished work, they go home and do that unpaid work. If those people were to go on strike not for a day but for half an hour, the State would grind to a halt, so we should value them more.

Deputy Paul Donnelly

Táim buíoch as an seans labhairt ar an rún seo agus gabhaim buíochas leis an Teachta Tully as ucht é a chur faoi bhráid na Dála. I have the privilege to have Praxis Care and the Blanchardstown Centre for Independent Living, two wonderful services, in the same building as my constituency office in Mulhuddart. There is also the Spina Bifida Hydrocephalus Ireland service in Castleknock, Laurel Lodge Community Centre and the Hartstown Local Centre. They do absolutely incredible work empowering people with disabilities to live independent lives and to achieve their full potential. These supports, along with their carers, are vital to that aim of achieving their full potential.

Last night, I was in the Corduff Sports Centre and attended the launch of the Thrive Group, which has been set up by a group of parents of children with DCD or dyspraxia. This fun-based club has been thriving and growing over the last number of months. There is one common theme among all of those people I have just mentioned. All of these groups - the projects, parents and carers - tell us one thing, that they have to fight from day one. They have to fight for every single service. They say to us - and I know they say it to the Minister and Minister of State as well - that trying to access anything with regard to persons with disabilities is getting harder. That means lost time, lost experiences and lost lives.

I welcome the Government's decision to not oppose this motion but I call on it to deliver a rights-based access service for people with disabilities. It is time for that now. People with disabilities need that now.

Deputy Pauline Tully

First of all, I thank all of the Deputies who spoke this evening on this motion, and for the various issues they raised. A number of Deputies talked about the Government not opposing this motion but a lot of what it calls for is for the Government to implement its own programme for Government. A lot of the items identified are in the programme, and they have not been addressed as yet.

The optional protocol has not been ratified, and I know the Minister has talked about an interdepartmental group now being established to look at the scoping exercise carried out by the Department in moving towards ratification. That sounds to me like another delaying tactic. We heard the same arguments about the ratification of the UN Convention itself being used for 11 years, and it was finally ratified in 2018. Now we are hearing more or less the same arguments around the protocol. As we said, we have had several different people come in to the disability committee telling us there is absolutely no reason it could not be ratified immediately.

A lot of Deputies brought up the CDNTs, and I know the Minister of State, Deputy Rabbitte, talked about the recruitment of new staff, which would be very welcome. However, every week I have families coming into my office concerned about the lack of services for their children. They might be registered with the CDNT but they are getting no services whatsoever. Many of those children have not had any service or supports since 2018 or 2019. Many of them were in the early intervention teams before the CDNTs were formed. They aged out at age six, and that is it. They have had no more support since. We had Covid-19 and then we had the CDNTs being set up, but they have not properly functioned since. Some work a little bit better than others, depending on the staffing rates, but most of them do not. I hope that the recruitment campaign works and that they are fully staffed. I am not sure if there is another CDNT census being carried out by the HSE. It did one last year and the year before. I think it is around this time of year that it is published, and I would welcome seeing that again.

Last year, the vacancy rate across all CHO areas was 30%.

On the issue of CAMHS teams, children with mental health issues such as anxiety, eating disorders or self-harming behaviour also need support. It is so difficult for their parents and families trying to provide care while watching on as their children are not provided the services they require. I know this issue may not fall within the remit of the Minister's Department, but we need our CAMHS teams up and operating and working in conjunction with the CDNTs. We have many children who cross over from one service to the other. The two services should be working together to assess the children and provide for their needs.

Many families in my constituency have a family member who has suffered a stroke. Stroke affects many young men in their 30s, 40s or 50s. Young, working men suddenly have a stroke and may end up with an acquired brain injury or mobility issues. They return home after discharge from hospital, sometimes the National Rehabilitation Hospital which does excellent work although its waiting list is long. If there is nowhere for them to go, they end up in nursing homes, which are not the right places for them. That practice continues and these men have no access to proper services and supports. Even if they return to their family home, services in the community are so lacking it is unbelievable. Many people in this position are getting no supports or services. Their mental health can be affected. There is a major financial impact on the family because of the loss of earnings of the affected person who may not be entitled to a payment because his or her spouse is working and the income will be means tested. There are no supports.

I commend the Irish Heart Foundation, MS Ireland and several other organisations on the services they provide. The Irish Heart Foundation has indicated that approximately one third of stroke survivors returning home are being referred to its patient services, which are also supporting thousands of heart failure and other cardiac patients. Although these services are endorsed by the HSE and despite the recognition of their impact and cost effectiveness, the IHF receives only 7% of its funding for these services. This is not sustainable. If it is providing a service that the State does not provide - and many other organisations are doing exactly the same - it needs more support. Many section 39 organisations provide vital supports but are not funded to the level required.

The Minister also mentioned an increase of €29 per week in the disability payment over the course of three budgets. There are different social protection payments involved. People make the point to me that they get an increase in the budget but then their rent suddenly goes up. The cost of living has also escalated. The increases in payments are not keeping pace with inflation, and that needs to happen. We know the cost of disability still has to be addressed.

Question put and agreed to.

Dáil Éireann díospóireacht - Tuesday, 5 Mar 2024

Supporting People with Disabilities and Carers: Motion [Private Members]

Dáil Éireann díospóireacht -
Tuesday, 5 Mar 2024