Mary Seery Kearney (Fine Gael)
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I move:

“That Seanad Éireann: acknowledges that:

- family carers provide a vital contribution in our society by the provision of care for their loved ones;

- family carers provide this care at considerable personal cost in terms of their own lives and choices;

- in 2020, the Irish Health Survey showed that there were over 500,000 family carers in Ireland and of that, 88,900 were in receipt of Carer’s Allowance and over 52% of carers worked outside of the home in paid employment in addition to their role as carers; there is no reason to believe that these figures have changed in the intervening years;

- those in need of care are not mere passive recipients of care, but are themselves persons with stand-alone rights and entitlements to live a full and meaningful life, supported principally by the services of the State as obliged upon the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), as well as the care of their families;

- the care provided by family carers is unsustainable without the provision of supports and services in the community and via home care supports;

notes that:

- the Government commenced the Assisted Decision Making (Capacity) Acts 2014- 2022 and the Decision Support Service;

- Budget 2024 built on the provisions in the Budgets of the previous seven years that demonstrate the Government’s commitment to increase expenditure in the support of those requiring care and family carers, including:

- increasing the income disregard in the Carer’s Allowance;

- establishing an interdepartmental working group to examine and review the entire system of means testing for carer payments;

- increasing the Carer’s Allowance;

- increasing the Domiciliary Care Allowance;

- increasing the Incapacitated Child Tax Credit from 1st January, 2024;

- increasing the Home Carer Tax Credit from 1st January, 2024;

- increasing the Single Person Child Carer Credit;

- making a €400 lump sum payment in November 2023 for those in receipt of the Carer’s Support Grant, Disability Allowance, Blind Pension, Invalidity Pension, Domiciliary Care Allowance and the Working Family Payment;

- providing a total of €22.5 billion allocation for the public health system, to include an €808 million increase in core current funding to tackle demographic and service pressures, of which €15 million has been designated to improve respite care provisions;

- making a commitment to provide additional funding to extend the Free Travel Scheme to include people who are medically certified as unfit to drive;

- entitling, since 1st September, 2023, family carers to qualify for the Contributory State Pension, by being credited with contributions where they have been Long-Term Carers for periods in excess of 20 years;

- work on the feasibility and funding of a statutory home care scheme has been ongoing since April 2021, with the first meeting of the implementation group taking place in June 2023, to include advice on the establishment of a National Home Support Office;

- the inadequate provision of step-down supports leads to prolonged unnecessary stays in hospital by patients who are otherwise fit to be discharged if supported;

- Family Carers Ireland and other similar advocacy groups report a very serious lack of provision of respite services and day services, including emergency provisions to accommodate relief respite to allow family carers attend to unexpected events in their own lives;

- the complaints system in the HSE is unresponsive such that long periods of time can elapse, leaving families and advocates with nowhere to turn to have their lack of services addressed;

- children in need of assessments of need and disability services face long waiting lists to access those services;

- staffing in Community Disability Network Teams across the country is such that there is no team that has a full complement of staff, and many that have only one-third of the intended staff numbers;

- the recent Child Law Project Report highlighted the fact that the parents of a child had to go to court to oblige the appropriate treatment of their child;

- the recent ESRI report shows that young caregivers receive poorer leaving certificate grades and are less likely to go on to higher education;

calls on the Government to:

- ensure that the provision of disability services is a priority in the HSE Service Plan 2024;

- ensure that recruitment to Community Disability Network Teams is a priority within the HSE Service Plan 2024;

- provide for the financial relief for parents and family carers who have been forced to pay privately for assessments and therapies by allowing the cost to be either reimbursed or paid for through the National Treatment Purchase Fund;

- ensure that an adequate and responsive complaints mechanism is in place where there is a failure to provide services;

- carry out an audit on the spread of provision for respite services throughout the country, evaluating the provision, and to prepare a plan to address the provision of relief, emergency, short-term, overnight and longer-stay respite where deficits are identified;

- increase the capital budget for respite houses and residential units;

- create and publish a register of respite services throughout the country;

- report on the progress of the implementation group on the Statutory Home Care Scheme;

- publish a progress report on the implementation of the National Carer’s Strategy;

- publish a progress report on the implementation of the Enhanced Community Care programme;

- examine and report on the feasibility of providing a bespoke programme within the School Completion Programme to target support for young carers; and

- implement the optional protocol on the UNCRPD providing an individual complaints mechanism for persons with disabilities.”

I am sharing time with Senator Carrigy. I thank the Minister of State, Deputy Rabbitte, for coming before the House for the debate on this motion.

In the almost four years during which I have worked in the Seanad and during which the Deputy has been Minister of State, I have found her to be nothing but passionate and dedicated to making the changes that need to happen. The Minister of State will probably agree with much of what I am going to say and may already have taken action. I have paid tribute to her by setting out, noting and acknowledging in the motion all that has been accomplished and achieved. Recently, the Minister of State briefed me on the changes that are to come and what will hopefully be in the HSE service plan. Yet, I stand here today as a voice for family carers and those they care for.

I will begin with those they care for, who, in the main, are children and adult children who find themselves without services and even without the proper provision of what they have been granted in writing. I refer, for instance, to Gayle, who I heard from recently in the context of the Andrea Gilligan lunchtime show. I know the Minister of State has commented on this. They moved from community healthcare organisation, CHO, 9 and to CHO 7. Their experience was that the day-to-day care plan that they had in CHO 9 did not move with her adult son, Luca. Eventually, the woman went on a radio show to describe just how awful her daily life is and the lack of positive life for her son. When he had full day-care services and supports, these met his best life needs. Once they were taken away, he did nothing but regress and became very difficult to live with. Instead of there being a mother and son who loved each other, it became a daily test of endurance and torture for them both. The woman spoke about waking up and when eventually he was asleep at 2.30 a.m. and, at that point, she considered just going out for a walk, because that was the only time on which she could leave the house. She missed her own mother's funeral because she had no care, despite the fact that the HSE was notified that the woman's mother was dying. She could not get to visit her and could not get to her funeral. She cannot now visit her elderly father because she cannot get away from her home. She gets overnight respite once a fortnight and, by the time that happens, she is exhausted and she needs to mind herself.

I would love to say that this woman's case is unique and isolated or that she is the one who slipped through the cracks, but neither would be true. This week, I will attend the funeral of a child who was cared for by her mother. Over the years I have been here, I have made many representations on behalf of that family. The HSE put in place completely inadequate provision that was way below what the woman needed in order to care for a profoundly disabled child at home.During the hours when the nurse came, the mother could not even go to the shops because the child could not be left alone, but it was all right for the mother to be left alone for 24 hours a day, seven days a week, when the provision was not there or somebody was sick who was being sent by the agency operating on behalf of the HSE.

I could go on and on. In the same programme last September, Ger, who I know as Gerardine Harris, a childhood friend, found herself telling the nation that they were so desperate after ten years of pleading with the HSE to support them with their two sons, who had profound disabilities, that when the elder son went into respite, they rang up the respite to say they were not taking him home. They had reached that level of absolute desperation.

We see the child law report on a child who is left in a room with no natural light, no Wi-Fi and no television, off an emergency department, for 60 days while the HSE and Tusla fight with each other about who is responsible. The HSE then has the gall to walk into the High Court, when the parents of that girl eventually take their case, to say it did not do any harm. I would defy any of us to be in a room with no outlet and not be able to leave it for 60 days, with no natural light, and not be done any harm, let alone somebody who is there because they are already encountering or trying to cope with - or not particularly cope with - mental health issues and a plethora of other things.

I have met the people working on the ground. I know their passion, their heart and how much they go beyond the call of duty on many occasions. I know the things they do and how much they are under pressure to be supported in their job, how burnt out and tired they get, and how understaffed some of our community disability teams are. I know people who are fantastic professionals. However, somewhere in the middle of all this is an attitude or - I struggle to put words on it publicly, although I do put words on it in private - an abject lack of empathy and abject lack of foreseeability. I am not a professional in any of these areas but I can foresee that we need a panel of people to provide relief because, God forbid, a woman needs to go and get a breast scan or go to BreastCheck, or do anything - even get her nails or hair done, which is therapeutic and a good thing to do for your own self-esteem. None of that can be planned for because they do not know they will have support. People can face into a parent’s funeral with nobody to say, “It is okay. We will have somebody to cover this”, and nobody in management to turn around to say they should have a panel for this. I was a manager in services that had childcare and we always had a panel of relief staff because we had to meet our ratios and do all of that.

I call for the assurance that it is a priority. I have had people on the telephone say to me something like, “You know, that family are highly litigious, and we just need to watch that.” My response is that it is awful that they had to consider taking legal action because of the failure to provide them with services. Senator Carrigy will deal with the issue of children who do not have services but this is about family carers who yearn for their child to have a full, meaningful life and live their best life, and for carers themselves to have some comfort. They are not being served. They may be served in parts of the country and I acknowledge some parts of the country are very good, but we have a postcode lottery which means that, depending on where people live or what CHO they have the misfortune to find themselves in, they are not getting served and, in fact, within some elements, there is an attitude of contempt for the fact they need these services.

That does not come from Government. I know about the wrestling for money and I know there is more money now than there has ever been. It is not for want of money. However, the facts of the matter on the ground are that people do not feel they can plan for an emergency or for their future. They worry about their child, and I am sure Senator Clonan will say the same. However, there are things that should be foreseeable, appreciated and supported, and we have listed them in the calls we have put forward for the Government to consider. We need to take urgent action and look at what more can be done. It is not okay for someone from the HSE to come into the committee on children and say it will take us about six or seven years to fix the HR disaster and the recruitment disaster that is going on. That is not okay. There are people who are passing developmental stages and crucial moments in their lives are just bypassing them. That is not okay. I would urge that action. We need to act with a level of urgency so people know the true care that goes on behind closed doors, and I know that huge care goes on behind closed doors in arguing for and looking for services and making sure there is the provision, budget and all of that. However, there are people in the State who are being failed. It is not okay and it needs to end.

There are a number of solutions that we have suggested in the things we have called for. We are saying that these things need to be addressed as a matter of urgency. Within that, we need to demonstrate that we appreciate the families, we value the person with the disability, we value their life, we value their family support, and we are here to envelop that with care, as we should as a just society. I will address the amendments in my closing contribution.

Diarmuid Wilson (Fianna Fail)
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I thank Senator Seery Kearney for moving the motion. I call Senator Carrigy to second the motion.

Micheál Carrigy (Fine Gael)
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I formally second the motion. I welcome the Minister of State, Deputy Rabbitte, to the Chamber and acknowledge the support and work that she has done in that Department. It is a difficult role but it is one she has taken on to make positive changes, and I know she will make further positive changes. I am speaking as a Member of the Oireachtas but I am also the parent of a young autistic son, so I have a certain knowledge. I am by no means an expert but I know that as a parent, I am in a very lucky position compared to some other parents who are going through difficult times and will have more difficult times in the years ahead.

As Senator Seery Kearney said, we need to act with a level of urgency. Every day, I come in the front door of Leinster House and I am extremely proud to be here and to work for the people of my community to try to effect change. I look at the Proclamation that is hanging to one side as I come in, and the one line that always stands out to me is about treating all of the children of the nation equally. It will be 108 years ago this Easter that it was written but I am afraid we have not lived up to what we promised we would do 108 years ago.

We have a number of asks in the motion and I want to home in on a couple of them, in particular ensuring that the provision of disability services is a priority in the HSE service plan. It is a must. At a time when we have significant budget surpluses in the country, we need to prioritise disability services in the year ahead.I recently raised a Commencement matter with the Minister of State, Deputy Rabbitte, on the one-stop shops that were recommended in the autism committee report. I am delighted that a pilot is going to be rolled out with funding from HSE finances in 2024. That is the type of action we need to see across disability services. We need to see the roll-out of supports for families throughout the country.

We also need to see recruitment. I know this is a major sticking point. More than 800 positions across the CDNTs are now empty. In CHO 8, 43% of roles within children's disability network teams are not filled. Unless they get filled, we are not going to be able to provide services to the kids. Under the Minister, Deputy Harris, new positions became available in the colleges from September 2023 but the reality is that we will not have those professionals in place and employed in our disability network teams for four to five years. We need to throw the kitchen sink at this. We need to give every child the opportunity of a bright future.

The National Treatment Purchase Fund is used for various operations throughout the country. People are going to Northern Ireland for cataract surgery and so on but we will not allow funding from that system to be paid to parents who have to pay for a privately provided assessment of needs where we are not able to provide it to those kids who need one. There are massive waiting lists. There are 15,941 waiting for a first-time assessment for occupational therapy, 15,625 waiting for an initial assessment for speech and language therapy and a further 8,957 waiting for further speech and language therapy. They are drastic figures and behind them, ultimately, are children.

As a State, we have to use all resources available and every mechanism we can to address this issue. I know this is an issue close to the Minister of State's heart. We need to take on the HSE and deliver services for kids. We need to take down the wall that is blocking some of the mechanisms and supports that can be put in place to make children's lives better. That is something that must be done on a whole-of-government basis. We need to put the funding in place to make sure we get services to our kids.

Diarmuid Wilson (Fianna Fail)
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Before I call on Senator Clonan, I welcome Deputy Paul Kehoe and his guests from Georgia State University to the Visitors Gallery. They are very welcome to Seanad Éireann and to Leinster House. I hope they enjoy their visit.

Tom Clonan (Independent)
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I move amendment No. 1:

After the last paragraph under “calls on the Government to:”, to insert the following paragraph: “- abandon the proposals contained in the Green Paper on Disability Reform 2023 to medically categorise disabled citizens on their capacity to work.”.

Victor Boyhan (Independent)
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I second the amendment.

Tom Clonan (Independent)
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I thank the Minister of State for coming in again this evening. I thank Fine Gael for putting forward this motion. Care for our most vulnerable citizens is such an important topic. I am proposing two amendments, however. I have moved amendment No. 1 but I will speak to both amendments.

In the first amendment, I ask the Government to abandon the proposals set out in the Green Paper on Disability Reform put forward by the Minister, Deputy Humphreys, last year. It is an absolutely despicable document. It is outrageous. While proposing no other court of action, it suggests that 250,000 disabled citizens be medically assessed to categorise them on the basis of their capacity to work. These are children and adults who cannot get spinal surgery and who, as outlined by Senator Carrigy, cannot get appointments for physiotherapy or occupational therapy or get even the most basic treatments within the window of developmental need. The Government proposes that each of those citizens be medically categorised to establish their capacity to work. How offensive is it to a cohort of citizens in this country who are so poorly treated to submit them to a compulsory medical examination?

This measure has been cut and pasted from a discredited austerity policy in the UK that even the Tory Government in Westminster is beginning to dismantle and which has led to thousands of suicides among disabled citizens in England, Scotland, Wales and Northern Ireland. The University of Liverpool established the precise number of suicides. If you transpose it to the Irish population, it would be the equivalent of 600 disabled Irish citizens dying by suicide under this regime. It has to be stopped. If the Government thinks a tax on children's shoes would bring it into political disrepute, I guarantee that, if it persists with and pushes this Green Paper on disability, which terrifies disabled citizens, it will bring the Government into disrepute. I would advise anybody who harbours ambitions to be the leader of a party or perhaps to even to go to Áras an Uachtaráin to disassociate himself or herself from this absolutely despicable Green Paper. To call it a paper on disability reform beggars belief.

The second amendment has regard to the wording proposed in a Bill regarding Article 42B of the Constitution, which was debated without prelegislative scrutiny at committee level and under a guillotine last week. As this wording does not vindicate the rights of disabled citizens, I ask the Government to immediately - I mean right now - ratify all protocols of the United Nations Convention on the Rights of Persons with Disabilities, including the optional protocol.

Senator Seery Kearney asked what it is about Ireland and the attitude of people in the services towards our children. People in my community, both disabled people and carers, did not choose to be in this space. We are here by force of circumstance. However, the Ministers responsible have chosen to inhabit that space. Those people in the Health Service Executive who are promoted and gravitate into those areas choose to inhabit that space. All I can say about their attitude towards us is "My God." The Senator used the word "contempt". They have contempt for the rights of our children and young adults. The Minister of State and I have witnessed that on a call with a disability services manager. She has seen the contempt for the rights of my child.

The Minister of State said that care takes place behind closed doors. That is where the wording proposed in the constitutional referendum wants to keep us, behind closed doors, because it identifies the family as being the primary and exclusive provider of care and contains nothing to vindicate the rights of disabled citizens and carers, as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities. When you are behind closed doors, you are out of sight and out of mind. Nobody can hear you scream when you are in the community. The Minister of State talked about respite. As a family, we have had no respite over the last 20 years. In 20 years, we have never, even once, been away from our son. This has an impact not just on the disabled citizen, but on parents and carers.

Why is there contempt for our children? I believe it is because our children look different, sound different and move differently. I look at my son's hand, which is clawed as a consequence of having no physiotherapy, and I kiss each of his fingers. I listen to his dysarthric speech, which denies him the most powerful of instruments and is the result of a lack of speech therapy. I love his dysarthric speech and the way he talks to me but he is not valued as a human to the same extent as other categories of citizens in this Republic. That is for shame. In addition to all of these very noble aspirations, I ask the Minister of State to put her money where her mouth is, to vote for these amendments and to carry them out. I ask her to do that, to have ambition for our disabled citizens and to vindicate their rights. We should no longer have a charity model or a model of pity and the responsibilities of the family. Let the State now step up and vindicate the rights of this category of citizens.

Fiona O'Loughlin (Fianna Fail)
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I regret that I cannot stay for the full debate because I have to go to the disability committee straight after this. There is no greater disability in society than the inability to see a person as more than their disability. I am a strong believer in that. I know many people with disabilities, including in my own family. Honouring their ability to be the person that they can be is so important in my eyes and in the eyes of many.

Before I respond to the motion I wish to make a few points, particularly in relation to the whole area of care. We, in the women's caucus, brought a motion around care and supporting carers that was debated in the Dáil and the Seanad. Senator Clonan makes very valid points, but the Minister for Social Protection is the Minister who is dealing with exactly what he is talking about in the Green Paper. The Minister of State, Deputy Rabbitte, is here dealing with this particular motion. I believe that we need to have a debate with the Minister, Deputy Humphreys, on the points that Senator Clonan is making in relation to her Green Paper.

I certainly support this motion. The whole issue of care, the care economy, supporting carers, and ensuring we have respite care for those who need to be cared for and for the carers is vitally important. I refer again to the substantial motion that we brought before this House and the Dáil on delivering a rights-based care economy. The reason we did this, as a cross-party caucus, was that we were keen to have a discussion on the care economy and to see how the caucus could contribute to that. That is all about valuing care and valuing carers. The care economy is such a broad topic, and we need to have many different national conversations about it.

In Ireland, we have a complex social care system. It is a complex mix of public and private delivery and financing, and we could speak at length about all the different aspects of it. As part of what we did within the caucus, we sought submissions from 48 care organisations. We spent a full day with people from different organisations, particularly those with lived experience such as Senator Clonan has. We have to acknowledge the many challenges that are there for families. The Minister of State met with one family I know, and I thank her for that. For them, it was not just about the care of the child who needed the respite; it was the care for the other siblings in that family who were losing out on family time and did not want to bring their own friends home because of the family situation. Once a month or every six weeks, if they were lucky, they had the opportunity to avail of two nights of respite care and could have what we would term a normal family life. They never had a family holiday or weekend. They are the children about whom we have to be concerned as well - they belong to the non-disabled community but we could say they are disabled because they have a disabled person in their own home.

I know that the Minister of State is committed to the expansion of services for people with disabilities. The work she has done in underpinning significant developments around the programme for transformation in disability services is important, including the publication and implementation of the disability action plan and the progressing disability road map.

I refer to family carers again, because they are the most incredible people. They provide care to children and adults with additional needs. Many of these carers are older people themselves. I know many people in their 70s and 80s who are caring for their adult children and, indeed, sometimes caring for now disabled partners. They are caring for people with physical or intellectual disabilities or both, frail older people, those with palliative care needs and those living with chronic illnesses, mental ill health or addiction.

I note that €10 million was allocated in budget 2024 to respite services to build on existing provision and to provide and deliver more alternative respite, such as in homes, in after-school services and in youth services. Is that enough? I must ask the Minister of State that question. Do we need to look for funding for capital build in terms of delivering these much-needed services? There is a pressing challenge around complying with the assessment of need legal obligations and providing therapeutic interventions for children with available resources. There were over 19,000 assessments of need overdue for completion at the end of 2023. I know, from separate meetings with her and from speaking with her, that the Minister of State is genuinely committed and compassionate. She is doing everything in her power to try to improve service provision in the area of disability, but it is not happening on the scale we need to see. Care-giving is a hugely intimate thing. I know, from my own clinics, that many family members and loved ones provide care out of love and devotion to the person, but we are all human. Respite care is an essential component to ensuring that older people with care needs in the home, including those with dementia as well as those with disabilities, can be cared for in their community and close to their carers.

Tom Clonan (Independent)
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I did not want to interrupt Senator O'Loughlin, but I wish to raise a point of order. These amendments were submitted last week and were accepted, and there is an elision raised here that in some way they cannot be debated, discussed or voted upon. I want guidance on that.

Diarmuid Wilson (Fianna Fail)
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They most certainly can.

Tom Clonan (Independent)
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It is to elide what we are talking about here. This is a motion about care and caring, and the State's responsibility is to vindicate the rights and not to elide or engage in elisions about who is responsible for what or when.

Diarmuid Wilson (Fianna Fail)
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As I pointed out to the Senator before he spoke, while I was asking him to move amendment No. 1 only, he could speak to both amendments. There will be an opportunity at the end of the debate for the Senator to press his amendments if he so wishes. I have to follow the order of the House in making these decisions in the Chair.

Tom Clonan (Independent)
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I did not want to interrupt the flow of speech, so I came in at the end. I thank the Acting Chair for his patience.

Diarmuid Wilson (Fianna Fail)
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I hope that has clarified the situation for the Senator. I call Senator Hoey.

Mary Seery Kearney (Fine Gael)
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Is that an allegation?

Maria Byrne (Fine Gael)
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I thank the Minister of State for coming to discuss this all-important issue which I know is a subject close to her heart. As she is aware, I am involved in a respite house, St. Gabriel's Foundation, in Limerick, and we would not be up and running if not for the Minister of State's dedication and commitment. I acknowledge that and put it on the record. We sat with a vacant building for close to 12 months before the Minister of State came to visit and gave us the funding. We were opening the respite house only one day or two days per week on other occasions. It is now up and running full time and I acknowledge the Minister of State's personal commitment.

The Government has done a lot for carers but I feel it can go further. I understand it is a work in progress and not everything can happen at one time. Carers keep so many people out of hospital. They are so dedicated to looking after their own loved ones and, in many cases, friends are looking after friends. I acknowledge the work they do because it is important to acknowledge that. Many people are relieved of the burden of going into hospital when they end up with issues.

I am interested in the area of children's services. I know a family who have a very disabled daughter. At one stage, they were looking for permanent residential care, which is an issue because there is a shortage of places. That care is required for a child who is severely disabled. Because the child was growing, the family were finding it hard to lift and look after the child. It was not that they wanted to abandon the child but there were so many complex issues that they found it very difficult. While they had help from different services, it was coming to the stage where the family were really upset that they could not give the care and attention the child needed. It is an area we need to look at. When I inquired most recently, eight children were on a waiting list in my community healthcare organisation, CHO, area, which is quite a lot. Those eight children are still on that waiting list. It is an area I would like to see looked at or supported.

I compliment the "Be part of our team, be part of their lives" campaign. It was a fantastic scheme that related to dietitians, occupational therapists, physiotherapists, psychologists, social workers and speech and language therapists. I know from my dealings with children that there is a shortage of people with those skills. I understand a number of applications have been received, so I hope people will be put into those jobs quickly because they will help to support many children with disabilities. I spoke to a retired speech and language therapist who had been asked to come back to do contract work. It is about reaching out to people who have the skills and bringing them back on board.

Respite service is essential for families, especially those who have children or adults with a disability. It is such a needed service because it is 24-7 in many houses. We must invest in that whole system of supporting families who support family members with a disability and who need to be commended.

I have been campaigning for family carers and their access to a pension. I know there is a commitment that family carers will qualify, but up to now, they have been ineligible for anything. The commitment is welcome. Many people have given up jobs through necessity to become carers. They had a tough decision as to whether to continue with their careers or to become carers, which requires dedication. I have a neighbour, a young man, who is looking after his mother and aunt 24-7. One of them has dementia and the other is bed-ridden. I see the work they go through. They needed a stairlift and a downstairs toilet because it is an older house that does not have those things. It was not built with people who have issues in mind.This man was given the runaround when it came to trying to qualify for that support. It is a very difficult situation to be coping with caring for people who are ill and have a disability, while also trying to qualify for a grant. I would like more consideration to be given to this area. While a lot of people have qualified and there has been a lot of investment in the provision, some of the red tape needs to be removed.

Victor Boyhan (Independent)
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I welcome the Minister of State and join colleagues in acknowledging her deep commitment to the disability sector. I also acknowledge the work of her colleague, the Minister of State, Deputy Butler, who leads the national carers' strategy. They have collaborated since the day they were appointed as Ministers of State. Anyone who observes them operating in this House, the Lower House and in committees knows they are a formidable pair who are committed to getting on with the work. It is important to acknowledge that.

I thank our Fine Gael colleagues for using their Private Members' time to discuss this very important issue. We are now into the last year of the coalition Government. A lot has been done and there is more to do. People want to be ambitious and that is the right way to be. Colleagues have many opportunities to raise issues at the infamous Wednesday parliamentary party meetings that are much reported on in the media. Perhaps not everything that is reported is altogether true. That is neither here nor there but I am always amazed by the follow-up on a Thursday morning, when it is nice to hear bits of news on "Morning Ireland". I am sure half of what we hear is not true. I have an office in LH 2000, where I see one of the parliamentary party people going into the meetings. I can read a lot with my eyes when I see him. However, that is all neither here nor there.

When considering any issue that comes before me, I always look at what is being asked for. There are 12 asks in this motion, none of which is unreasonable. I will single out two or three. The fifth request is for the Government to "carry out an audit on the spread of provision for respite services throughout the country, evaluating the provision, and to prepare a plan to address the provision of relief, emergency, short-term, overnight and longer-stay respite where deficits are identified". All the proposals are important but this is a particularly important one. Another request is that the Government "report on the progress of the implementation group on the Statutory Home Care Scheme". However, the references are all to publishing reports, what should be done in the future and ensuring certain matters are given priority. There are no timelines. I ask the Minister of State to address that in her response.

I have no difficulty with any of the requests or the motion in general. I ask that all Members take on board the two very reasonable requests by my Independent colleague, Senator Clonan, who has spoken passionately about these issues. He has lived experience of them, which he shares with us every day. He is an amazingly strong advocate for people with disabilities. We all have experience of disability either within our immediate families or within our communities. We all know there are not enough resources to go around. We cannot keep on just talking about this. We had the former Minister of State, Finian McGrath, in here a few years ago saying more or less the same as what we are hearing today, which is that the Government is working on it and there will be more resources and more engagement.

It is not unreasonable that we go a little further. The two amendments to the motion put forward by Senator Clonan speak for themselves. I appeal to colleagues to ensure we do something. We are in our final 12 months in Seanad Éireann. Many of us will not be back, some not by choice and others because they are going to the Lower House or somewhere else. It is important to use our remaining time in the Seanad in a collective and collegiate way to get something done. We have an opportunity to do so today. I appeal to colleagues on all sides of the House to come together and support the two amendments. I hope the Minister of State will spend some of her time in the debate focusing on the amendments as well as responding to the substantive motion. I would like to hear what she has to say in response.

I am asking for a roadmap, timelines and a commitment on resources. I am sure these are words that run off the Minister of State's tongue on a daily basis in her Department. I know how she operates and how she, rightly, makes demands on people. It is her job to do so as Minister of State. I want to hear from her what the roadmap is in the very short term for progressing these issues, including those addressed in the two amendments. Can she reassure us by giving timelines? What resources will be given? If we do not have the resources, the Minister of State is honest and frank enough to tell us so. We need to hear it here, in the Parliament, not anywhere else.

In amendment No. 2, Senator Clonan calls on the Government "to immediately ratify and implement the optional protocol on the UNCRPD". The Minister of State will note the word "immediately". This is a reasonable and fair request. I have no doubt that everybody in the House is committed to making things better for carers, empowering all our citizens and treating all citizens equally. We must be ambitious for all our citizens. That is at the kernel of all the asks in Fine Gael's Private Members' motion and the two very fair and reasonable requests by Senator Clonan in his amendments. I ask that we demonstrate to those listening to the debate this evening, including people with disabilities and their carers, that we mean what we say. Let us give power, rather than voice, to action. I appeal to colleagues to come together to support the motion with the addition of the two amendments.

Pauline O'Reilly (Green Party)
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I thank the Minister of State, Deputy Rabbitte, for coming to the House and staying for the debate. I also thank the Minister of State, Deputy Butler, for her work in this area, which was rightly pointed out by the previous speaker. I do a lot of canvassing, as many colleagues do, and one of the recurring themes at the doorsteps is disability rights and the situation of carers. It is our job to bring all those concerns to Parliament and have them addressed. I thank the Fine Gael Senators for allowing us all the opportunity to do that. Last weekend, I canvassed five different parts of Galway and, again, this issue was a recurring theme. Carers are not talking only about their own needs. They are advocating for their family members, particularly those who are living with disabilities. It is exhausting to have to advocate for the recognition of the rights of those family members.

Everything in the motion is admirable, particularly the call for the implementation of the optional protocol to the CRPD. It is absolutely urgent that we ratify it. However, there is no point in doing so if we do not, at the same time, address people's needs. We cannot meet the current demand for home care provision. The statistics show that demand is set to increase up to 2030 by between 48% and 66%. That is a massive increase. If we look at the Irish demographics, we see the shift is moving in the other direction in terms of those who are able to provide home care. There is a mismatch with the demand. I know countless families who are not getting even one hour of respite and have never had respite over the years their family member has been living with disability. That is really difficult. As I canvassed last weekend, it was the situations of those families that were making me feel really emotional. It is really hard to listen to their stories, particularly because most of us are touched by the same issues within our own families and our own daily lives.

As a country, we are a caring people. It is important to talk about the forthcoming referendum when we are talking about care. The word "care" was specifically chosen, rather than "carer", because the referendum proposal is really about relationships of care within families.I commend Family Carers Ireland, One Family Ireland and the Independent Living Movement Ireland, all of which are supporting the referendum wholeheartedly. I also commend the National Women's Council which has made a very touching film focusing on several people who are impacted by a lack of striving to support these families. Those words are very different from the words already in the Constitution. It is about striving to support, about creating a new obligation on the Government. However, we should not need to have that obligation. Having been there at the National Women's Council's campaign launch, I know that if we get a really strong "Yes", "Yes" across the board, it further enhances our movement and gives more power to this.

Looking at the Family Carers Ireland scorecard, five of the areas have received limited progress; three have received good progress; none has received full commitment achieved; six have achieved no progress; and four have been regressive. I know the challenges. I look forward to hearing the Minister of State outline what is happening; that is what she is here for. Family Carers Ireland have said that unfortunately the gains are eclipsed by setbacks and insufficient progress in critical health areas. Of particular concern are regressive steps in areas such as home support, assessment of needs, waiting times and the availability of vital respite and disability day services. I know families dealing with these issues and they do not want to have to say this is what they need. They should not have to say it, but they do need it and are crying out for it. They are emotional when they meet a politician and are advocating for themselves or a family member.

This is one of the most important motions to come before us. It is incredibly important that the Minister of State is here to take it. I know her commitment and I know what she is up against, but we need to see that striving for progress in order to have the confidence that we will meet this increased demand and will deal with the demographic shift which will make it harder, not easier, for home carers. Right now, I feel we are in a bit of a crisis.

Eileen Flynn (Independent)
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I am glad to have the opportunity to speak on this very important matter this evening. Care is at the core of our communities and our connections. We need to start looking at care differently and speaking about it differently. We should not use cost to measure the impact of care because our society is built on care. Care often lays the foundation for persons to live independently. This motion states that those in need of care are not mere passive recipients of care but are themselves persons with standalone rights. Every person in the world has needs and will need care in childhood, sickness, struggles and old age. We do not question whether these are people with stand-alone rights and so why should we ever question it when it comes to people with disabilities? This motion focuses on the contribution of family carers but it does not acknowledge other people who provide care and it does very little in respect to the rights of people in the disabled community.

Family carers are not just caregivers, they are advocates. By supporting them we can also support disabled communities but we need to follow the social model of disabilities and lay out the right foundations. I strongly welcome the amendment tabled by Senator Clonan to abandon the Green Paper on disability reform, and to ratify and implement the UNCRPD optional protocol. Now more than ever the Minister needs to set a date as to when this ratification will happen.

The lack of support for children with additional needs and their carers have been spoken about many times at committees and in these houses. The title of the report of the Ombudsman for Children 2023 was Nowhere to Turn. Unfortunately, a lot of the time disabled people have nowhere to turn. Parents have told us how they have had to fight for supports for their children for years on end. We know all that and I do not want to repeat what other Senators have said this evening. I welcome the establishment of the working group to review the system of means testing. We should not be intimidating carers with the means testing system we have at the moment so I think we should get rid of that full stop.

One of my biggest concerns relates to young carers. The ESRI report shows that young people who are caregivers receive poorer leaving certificate grades and are less likely to go on to higher education. If we are to develop a programme to target supports for young carers, as I believe we should, we should consider something other than school-based programmes and look more to a State campaign that focuses on young people.

I welcome all the measures that support family carers and people with disabilities. Family carers are such strong advocates for people they care for. People with disabilities are such strong advocates for themselves and we see that through the committees. We in Seanad Éireann must be strong and be advocates with people with disabilities and not for people with disabilities. If we were to listen to people with disabilities on the ground, we would abandon the Green Paper.

Gerry Horkan (Fianna Fail)
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Based on the time we have left and the number of speakers, not everybody will get in. I am counting Senator Higgins in already. If everyone takes a minute off, everybody will get in, but if everyone goes for six minutes they will not. Is it agreed we cut their speaking time to five minutes for everyone else? Agreed.

I now call Senator Lombard, followed by Senators Malcolm Byrne, Kyne, Doherty, Higgins, Cummins and McDowell. Senator Lombard does not need to use the five minutes; if he can say it in three, that is grand.

Tim Lombard (Fine Gael)
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I welcome the Minister of State and I acknowledge her commitment to this area. She has been a fantastic ambassador and has worked really well on some really tough cases that I have personally brought forward to her. We have a different scenario down in my part of the world where we have agencies involved in respite. The Minister of State knows exactly what I am talking about. I am talking about places like CoAction, Cope and Brothers of Charity. They provide the respite services rather than the HSE directly, which complicates things. I want to address that complication today. Much as these organisations do fantastic work on the ground, the lack of respite is a huge issue. How we can deliver respite will be the big issue in future for these struggling families.

I mention one facility in particular Garrylucas in Ballinspittle. It is a wonderful part of the world with a wonderful beach and if the Minister of State is ever down there, she should go there. The facility is only open for 12 to 13 weeks of the year and the rest of the time it is closed up. This is a respite centre that people in my part of the world depend upon but it is literally only going for three months in the year. Because of the way this is set up we need to do more to encourage the agencies involved to do the works that are appropriate to make sure it can be open 50 or 52 weeks of the year. It is a wonderful part of the world and the centre does amazing work. However, we need to make sure we can maximise capacity. I will be writing to the Minister of State about this issue. I have not written to her in a while about it.We need to move on the areas where we have capacity to make sure we can maximise respite because respite is a huge issue for us.

I wish to raise another issue. I was at a meeting last Monday night in Dunmanway. There were some fantastic speakers on Down's syndrome - wonderful people. They spoke to me about their issues in this area. It became obvious in the debate, that the gap was from six weeks to maybe four and a half years of age, and then from 18 onwards. There were services that worked for them between four years of age and 18 years of age, but they had huge issues working on speech therapy and other therapies required to get them up to four years of age. When they finished schooling, they then had no outlet. They had no place to go. They had no sheltered employment. I acknowledge the work done in the Oireachtas on sheltered employment. We see wonderful work every day. It is a system we need to start talking about. There should be a mandate for local government in particular to make sure the sheltered employment opportunities I see every day in these Houses are rolled out across the entire local government sector. That should then be the catalyst to make sure the private sector gets involved as well. We need to have increased numbers of sheltered employment opportunities. These people want and need to be a part of this society. They can play a wonderful part in this society. We have seen it in these Houses. However, we need to do more to instruct local government management to work in this system. I call on the Minister of State to use her influence with that sector in particular. If we can have movement there then we can hopefully move forward and have significant movement within the private sector. Unless the public sector does it, nobody will do it.

They are my two calls to the Minister of State. First, we need to maximise what we have and in some areas at the moment that is not being maximised. Second, the sheltered employment opportunities need to be looked at. We need to put a strategic plan in place to make sure everyone is involved in that.

Malcolm Byrne (Fianna Fail)
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Cuirim fáilte roimh an Aire Stáit. I thank Senator Seery Kearney and the Fine Gael Senators for putting forward this important motion. It is well known that the Minister of State is a champion for disability issues. I sometimes think she ends up bearing a lot of this on her own shoulders. A challenge in this space around disabilities and support for carers is that it has to become a whole-of-government approach. Listening to Senator Lombard, I was conscious this is about local governments taking responsibility. I will talk later about the role in education and further and higher education as well.

The big change that has happened is that we should be moving more toward the rights-based approach. Even the moving of disability services from the Department of Health to the Department of disability and integration should really mean something. It means that this motion is not just about targeting the Minister of State and saying what she has to do. It has to be about a whole-of-government approach. All of us in our communities know the important work carers do. Leave aside the important support they provide to those with disabilities or to the elderly. Just think of the economic cost to the State if those carers did not provide those services. It amazes me that the State decides to pursue particular legal cases because it is afraid of setting precedents. If it actually looked at the cost if carers stopped providing their supports, the costs to the State would be phenomenal. I echo Senator Lombard's point about voluntary bodies. The Minister of State will be familiar with the need for respite services in Wexford. She has visited many of them, including St. Aidan's day care centre in Gorey. We still rely heavily on charitable organisations around the country for the provision of respite services. Even though she has championed a significant number of improvements, I think some of the challenges with recruitment and retention will be a problem until we start to link some of the work that is done with public sector pay. If somebody is working in a respite service there should be a direct link with somebody working in the HSE more of less carrying out the same work. Support for carers is not just about financial support. It has to include those wraparound services, including respite services.

I want to touch on something mentioned by Senator Flynn, which is the issue of young carers. I know a number of them and so would others. I am sure the Minister of State has met them. They are people in their teens, or even their early 20s. Because of family circumstances, they suddenly find that they are the carer and the person who has to take responsibility. Some of these young people are incredible. However, it often means that their responsibilities, which they take seriously, are not only at the expense of their own social lives, but they also frequently impact on their education or their training and further and higher education responsibilities. I particularly welcome the provision in the motion for a bespoke programme within the school completion programme, but I think it needs to be more than that. It has to ensure there is a pathway that sends a message that just because you end up being a carer through family circumstances, all of those other opportunities in life will not be denied you. That happens both with the run in to leaving certificate, but the necessary supports equally need to be put in place whether somebody is in further education, university or another higher education institution. I specifically hope the Minister of State might address that issue.

Seán Kyne (Fine Gael)
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The Minister of State is welcome and I join others in acknowledging her advocacy and work in the area of disability services. She is a strong advocate and a personal support to all of those families and communities. I first acknowledge, as I did on the Order of Business this morning, the double payments for carers this week and for persons with a disability. That is an acknowledgement of the work and support of Government, and an acknowledgement of the difficulties with the cost of living many people face in this country. Like many people I was, at a time, a carer for my late father. I am proud and privileged to be part of a team, which included six brothers and sisters, my mother and in-laws. We were lucky. We were a large family. We were able to do that. However, I am conscious of somebody who does not have children, and who probably will not at this stage. What is down the line for them when they get older and will there be somebody there to look after them? I also acknowledge that there are full-time carers like Senator Clonan whose life's work is looking after their loved one, and they do it without complaint while rightly fighting for improved services.

This is something that has impacted, is impacting, or will probably impact every family. You could have a large family, but it is spread through different parts of the country or the world. We were lucky enough that there were six of us in the general area. There was one in London, and they would come back and forth. There are other families scattered to the four corners of the country and the world or that have differences. There are also only children. There are people who burn out looking after and trying to provide for loved ones. In the recessions we had, you could argue that the issue was funding the organisations to provide the services. You could then argue during boom times that the problem is not so much funding, but getting people to do the necessary jobs. A more consistent approach and delivery would obviously be preferable. That concerns pay rates and everything else, as Senator Byrne has said.

I know the Department of housing is tasked with the capital expenditure for respite houses. Is that the best model? Is it a problem?

Anne Rabbitte (Galway East, Fianna Fail)
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It is.

Seán Kyne (Fine Gael)
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If a bungalow on a half-acre site in a sylvan setting is available in east Galway or wherever, and the Brothers of Charity or Ability West want to buy that, is there a process where they can streamline and get that quickly, or is it convoluted and complicated meaning that property is not available?Can we do something to look at improving that? There are specific requirements that certain children and young adults want. They may have sensory issues. They may like the outdoors, or the feel of leaves or green grass.

If someone in a setting and or in a family has a friend or friends that he has spent his life growing up with, we want to be able to ensure those two or three young lads will move along together to the next home; their home, as it were. Having dealt with people who are brothers like that, I know that they call it their home: Tom's home, John's home, Michael's home. It is their home. It is their home away from home but it is their home. Is there any way we can look at streamlining the process so that when a property is available, two steps have to be taken instead of ten steps? This would ensure the organisation could move quickly.

I often come across parents who are pensioners and are caring for young, or not so young, adults. In some cases, these adults are in their 50s or 60s and their parents are in their 80s or 90s. The parents might not be full-time carers but they are still worried about what will happen when they are gone. That is something that is very difficult. I always say that they will be looked after by the State but we cannot say where, when, and how. Perhaps this is something on which the Minister can comment.

Tom Clonan (Independent)
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Hear, hear.

Gerry Horkan (Fianna Fail)
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Our next contributor is Senator Regina Doherty who has five minutes.

Regina Doherty (Fine Gael)
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I probably will not take five minutes. I want to concentrate on the ask. I commend my colleagues on the breadth of this motion. I thank them for their commitment over the last couple of years. They have done a stellar job. I know they could do ten times as much if they were let but I put on record that their commitment really shines through.

I commend the HSE on the near-annual recruitment of NCHDs. We have this two-year rotation and go off to other countries to make sure we get our doctors back so that we have junior doctors in our hospitals. We do the same for our nurses. We go off to the four corners of the world looking to get our Irish nurses back and other nurses to come here and save us. Now the Minister of State is talking about the launch of a new plan by the HSE called "Be part of our team, be part of their lives" which is great because it recognises all the vacancies we have among all the disciplines. We all come to the House week in, week out, to speak about how much of a shortage there is.

The one glaring omission, and this is my ask today, is that we have 27,000 men and women in this country working as healthcare assistants, HCAs, across the entire spectrum of our hospitals, in nursing homes, in residential care homes and in people's homes. However, we still have nearly 10,000 families waiting for healthcare assistants to come and help them. We have no recruitment speciality programme to go out to train HCAs here - we could have buckets of people training them if we just had a proper programme - or to recruit HCAs from other countries. Can we add HCA as a speciality within the carer strategy and the "Be part of our team, be part of our lives" recruitment programme to acknowledge that they do enormous work? In the last year, I have seen the absolute random acts of kindness done by young men and women who look after our aged population, not only in our nursing homes but also in their own homes. I wish we could have multiples of them but if we do not proactively go out to train or recruit them, and make it a really positive profession in which to be involved, we are not going to get any more people in that industry.

I commend Senator Kyne on the last comment he made. We have a real problem in this country with leaving ageing parents who have adult children with disabilities, who perhaps go to respite care a couple of times a year, with no pathway to reassure them as they get older that they do not have to worry about what will happen to their children. We all know parents in families who are worried about their daughter or son who might have to look after their brother or sister when they eventually go to their eternal reward, and it is not fair. There are far too many people in this country living with stress and trauma about which we could actually do something. I really wish we had a proactive strategy. I know we do not have buckets of money to say it will be done tomorrow but I wish we could give people peace of mind to reassure them that as a State, we will step in when we need to.

Alice-Mary Higgins (Independent)
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I welcome the Minister of State and the motion. The motion is a clear sign of what we need following on from the debates we had last week, when we looked at the upcoming referendums and at the question of how we, as a State, address the issue of care. It is a very good sign that Government Members are putting forward this motion and setting out a level of ambition. Two important principles are acknowledged at the beginning of the motion and I will respond to them. First, the care provided by family carers is important, but the care provided by family carers is unsustainable without the provision of supports and services in the community and via home care supports. That is a very important acknowledgement. I have been clear that it would have been better if "community" were referenced in the text of the amendment we are going to be voting on in the upcoming referendum. Nonetheless, it is important that we make it clear in that language that is talked about with the "strive to support" that this striving has to include community supports as well as supports in the home. It is a really crucial point.

The importance of HCAs was mentioned. I totally agree. In fact, my Commencement matter this morning was on the issue of how we need to do an awful lot better in the education pipeline in supporting more diverse healthcare workers coming through our system. We also have to support personal needs assistants, which is a slightly different piece, but is very important in ensuring people with a disability have their independence and are able to participate and contribute in society in the way that they wish. That is another very important piece of the puzzle.

There are a number of important recommendations here. I agree with them. I suggest a few probably need to go a little further. Regarding statutory home care, it is not simply enough that we report on the progress of the implementation group; we need to see implementation. We need to have a roadmap for implementation. We need to know what the timeline is for the implementation of statutory home care and the entitlement to such care. We needed to have delivered that yesterday so that we can move on to looking at things like personal needs assistants, which is the next step. Again, I would like a really clear commitment regarding the timeline on statutory home come. I think the motion says it has been worked on for a few years. I worked on it over a decade ago before I ever came into these Houses. We have been calling for that with Older and Bolder. This is important too for the national carers' strategy.

I want to highlight the reference to the carers' credit within the pension system. While I really welcome that credits are given for care for up to 20 years, there is a real problem that the number of total contributions required has been pushed out to 40. Effectively, the goalposts have moved. Instead of a situation where you needed 20 or 30 credits, now you need 40. Even if you are getting 20 of them as care, you are still in the same trap we saw for many years whereby women in particular tended to fall into a reduced-rate pension. That said, there are ideas and motions here. I know the Minister of State will come back with strong language but we need to see serious resource commitments from all of government. A signal needs to come in the next few weeks so that people can be confident that we are going to see a step forward in terms of the vision for care in Ireland. What we have in the Constitution right now is grossly inadequate. It only includes women. It only includes married women. It does not recognise the care given by mothers or others if they are not married. The 25% of women who are in one-parent families, for example, are not recognised in it. Men who deliver care are not recognised in it and neither is the wider set of family relationships in care. Yes, it is improved but still there is the language. "Endeavour to ensure" is what we have now. "Strive to support" is what we are getting. Both of these feel a little woolly and we need to really strengthen them. We need to have very robust, strong signals of what they are going to mean and that is why giving those signals on things like the statutory entitlement to home care is important. I will conclude by indicating my support for Senator Clonan’s amendments. The Green Paper on Disability Reform 2023 was an appalling misstep and should be shelved. More importantly, the ratification of the optional protocol of the UNCRPD is particularly crucial. If we pass this amendment, we hope that those who are involved in the provision of care will have something in the Constitution they are able to call on, use and make justiciable if they have to in order to tell the State that it is not striving enough. We want to make sure that persons with a disability who have direct right in their own right also have a tool they can use. The UNCRPD is a crucial tool in that regard. Right now, individuals do not have access to it until we get the optional protocol. We need a date for the ratification of the optional protocol. I urge the Minister to State to support this amendment as Minister of State.

John Cummins (Fine Gael)
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I thank the Minister of State for taking the time to be in the House to listen to all of the contributions. All of those who took the time to speak on this very important motion did so in good faith on behalf of the near 500,000 carers we have in the country.

The Government wants to continue to expand the supports we have in place for carers. It is very important for families that we ensure that the carer is cared for. If the latter does not happen, we have a breakdown of the entire support system.

My family cared for my aunt ,who had Alzheimer’s and who sadly passed away during Covid. There is difficulty in respect of the family’s support network and trying to care for an individual and keep them at home. Respite is such an essential part of that. It gives the carer the essential break to be able to care for themselves in order that they can care for their loved one.

There are a couple of parts of our motion that reference the audit on the spread of services and creating and publishing a register of respite services. I would like to know that information. I cannot find the information of the exact number of respite beds per county anywhere. I know it is available but it should be publicly available. We should know exactly where there is a dearth of services in this country and where gaps have to be filled by the State. There is never an oversupply, but there are areas that are better served with respite services and there are others that are less well served. We need to know exactly where they are in order that we can address the issue going forward.

My colleague Senator Maria Byrne referred to residential care beds. The same would apply to that. I want to know exactly where those residential beds are and are not. I have had families in Waterford who had to have children go out of the county in order to get residential care beds. Putting a child into a residential setting is such a difficult decision for a family to have to make. They will do it as the very last resort because they cannot cope any longer without the support. It does work and it really helps. I have a couple examples of families we have helped in the office and it is working. However, they should not have to go outside Waterford for that service.

This is not to start a debate or criticise any amendment, but I wish to comment on Green Papers. They are discussion documents; they are not final versions. I just looked at the Green Paper while I was listening to everyone’s contributions. On the second page, it states:

[This] Green Paper ... doesn’t claim to be the best way or the only way ... [It is only] to encourage thinking, discussion, and to prompt suggestions.

I always think it is good to discuss matters and not stop discussing matters. I hope by engaging and discussing all of these matters, we can land on the appropriate White Paper for disability reform going forward.

John McGahon (Fine Gael)
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It is timely that Senator Cummins finished as a member of the labour panel because we have a former member of the labour panel here with us tonight, namely, of former Senator Don Lydon, who served as a Member of this House between 1987 and 2007. It is a timely debate as well because he served as the Fianna Fáil justice spokesperson. It is great to have him back. If any of us have the length of career he did, we will be doing quite well. Senator McDowell will speak next but I would like to emulate former Senator Lydon and be here for the next 15 years. It is great to have him here. I welcome him back to the place he worked for so long.

Michael McDowell (Independent)
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I welcome the Minister of State and thank her for her presence. I associate myself with the remarks about her commitment and determination to do her job, which is universally admired.

Senator Clonan made a point that what we are dealing with is the rights of disabled people and the rights of citizens who are disabled to receive care and support from the State.

Regarding the proposed amendment to the Constitution, it is to insert a new heading in the fundamental rights section, described as Article 42B. Even though it is being put into the fundamental rights section of the Constitution, no rights are created whatsoever by it, and that is worrying. No rights are actually created by it; it is there but it is not creating any further rights.

Nobody can gainsay the immense contribution family carers make - that is true. However, there are people who, for one reason or another, need care from the community rather than family, for example, elderly people who have no family and disabled people who have no functional family left. Those people are not even remotely addressed by the constitutional amendment. It simply does not refer to them. Rather, it refers to the contribution of family members arising from their bonds of affection or whatever.

Tom Clonan (Independent)
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Hear, hear.

Michael McDowell (Independent)
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For people whose state of affairs has no family dimension, this amendment promises absolutely nothing, yet it is being put into the fundamental rights section of the Constitution. I just wonder what it is doing there. Are we are saying that we are creating rights? If we were going to create rights, we would do what Senator Clonan is suggesting, which is ratify the protocol to the international instrument and create statutory rights for people, not just people who have a family or what remains of their family to support them, but also for people who are not in that position.

I do not want to be negative and I am not being negative. Things can be put into the Constitution that have no effect virtually at all. For a disabled citizen who needs care but does not have a family in a position to give that care, this amendment does not even aspire to deal with their situation. The term “striving” means nothing because it is striving to support family members who are not there to support such a person. I am suspicious generally of people tinkering with the Constitution, but I am much more suspicious of someone who says they are putting something into the fundamental rights section of the Constitution. The Constitution, in Articles 40 to 44, inclusive, deals with the personal rights of citizens, family rights, education, religious rights and children's rights. We are now putting in a new part which is headed "Care". This is a new chapter or subchapter, so to speak, in the Constitution. The strange thing about it is that no rights are being conferred and for very significant numbers of those who need care, their situation is not even being remotely addressed by the constitutional amendment we are putting in place.

I wish the Minister well in everything she does, but I do not believe this particular amendment will change anything. Senator Clonan's amendment would achieve something.

Emer Currie (Fine Gael)
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I was sorry to miss most of the debate, but I did not want to miss making a contribution. It is not very often that I find myself saying that, when I visit Tyrone, I can see services that are working better than they are here, particularly in the current climate. However, that is what happens when it comes to respite care. I have family members who depend on respite care. It is regular, consistent and a lifeline for them. Then I find myself meeting people on the doorsteps, the parents who do not have time to come and visit me or the parents who have so much on their plate that the best place is on the doorstep to talk to them about their heartbreaking lifestyles and situations. Senator Seery Kearney has spoken about a family where a mother missed a funeral. That is an example of the pressure these families are under. They could be up all night or all week and then might have their respite care removed without adequate explanation and face a wall of bureaucracy in trying to secure it again. I have been in that scenario with too many families in CHO 9 in Dublin 15, where the response has not been what would be expected. The emails sent back to these families do not reflect in tone the situation they are in. They have been disappointing. Meetings have then been needed to actually get movement. I very much support there being an audit of respite services because they are thin on the ground. The system is difficult to access and navigate and for people to figure their way around it, which is unacceptable. I know the Minister of State knows this. She made assurances to me about the CDNTs in CHO 9. Unfortunately, they have not improved in the way we want. The pressures then, are on the families and there is also pressure in the schools. Teachers are trying to do their very best, but they, too, are under tremendous pressure because we do not have enough therapists.

I know the Minister of State was looking at blowing up the pathways, so to speak, to recruit therapists, but it is no comfort for people who get cold emails saying things like "You have been the waiting list since 2020 and your adult child is not getting the services they need". When it comes to early intervention, often the short intervention that would be required to assist a family goes on years. I am pleased the Minister of State is here and I know she is very committed to this. We really do need to see change.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank everybody for their contributions and those who have stayed for the whole time. I thank Senator Seery Kearney and her colleagues for putting down this motion and affording us the opportunity for the conversation this evening. There have been valuable contributions made. The one that stuck out for me was that of Senator Victor Boyhan. He has taken me to task to talk through what were the asks within it which will address the motion as well, and it gives me a chance to speak to them.

The motion calls on Government to ensure the provision of disability service is a priority in the HSE service plan. Absolutely. The service plan will be published in the next few weeks and it is hoped that will be seen. I can assure the House of that. Since I transferred Department, I now have quarterly meetings with Bernard Gloster, Ciarán Devane and members of the board. Disability is a priority within the board and we are now meeting regularly. It also gives us the opportunity to discuss and tease out items such as those raised in the debate. I and the Minister, Deputy O'Gorman, and our officials met with Bernard Gloster, Ciarán Devane, Brendan Dunne and Fergus Finlay last Tuesday.

The motion also call on Government to ensure recruitment to the community disability network teams is a priority within the HSE service plan. In the recruitment campaign, and this was referenced by Senator Maria Byrne, we got 495 applications in a four-week period to work in our disability teams and the wider disability area. Of those applications, 125 of them never worked in the disability sector before or never worked within HSE section 38 or section 39 organisations. They are completely new recruits. The others are within section 38 or section 39 organisations or the HSE and looking to come in to work in the disability area. The interviews for those will start in the next two weeks. To get 495 applications in a four-week period from people showing an interest in disability is commendable.

Of the 800 therapy posts we have funded in the past three years, 397 of them are filled, which means that I still have 50% in funding for 50% of posts to fill.

I have also removed the panels. Any Member who meets staff from the HSE will know they always speak about the panels and the struggle because the panels hold things up. For Donegal, Galway and Waterford we have removed the panel situation. If somebody in Dublin and wants to go back to live in Donegal, for example, and they are number 99 on the panel waiting to transfer to Donegal, there is now no panel. The person can email HR directly saying they would like to move to Donegal. The person will be interviewed and will be facilitated with a move. This is to blow the panels apart along with this idea of waiting for it to go around. I hope that when I can demonstrate in Donegal, Galway and Waterford that this system works, we can move to other counties - Senator Currie has gone - and I will then be looking at the more densely populated areas to see what we need to do that.

The motion further calls on the Government to provide for the financial relief for parents and family carers who have been forced to pay privately for assessments. Under a Labour Party motion earlier last year, I made a commitment on two counts. One is that I would put regional assessment hubs in place. Eight out of the nine of them are in place. I also committed to looking at the reimbursement piece. I am glad to say we secured funding in the budget; not an awful lot but enough to get us going and get it started to be able to demonstrate its effectiveness. I am working with the Taoiseach and his office on this, as is Noel Byrne in my office and the Department, to devise a mechanism whereby we can do support on a reimbursement scheme.

The motion also calls on the Government to ensure an adequate and responsive complaints mechanism is in place where there is a failure to provide services. I cannot talk to the whole operation of that, but within the CDNTs we have the family forum.That is one of the ways of holding people to account. At the same time, if that is an issue, we will make it available to investigate how a mechanism could be put in place.

The motion calls on the Government to "carry out an audit on the spread of provision for respite services throughout the country, evaluating the provision, and to prepare a plan to address the provision of relief, emergency, short-term, overnight and longer-stay respite where deficits are identified". I would add shared care, after-school care and Saturday clubs to that list. I have a five-page document relating to a complete audit I have done in respect of respite services. I texted my private secretary to get it down to me here in order that I could show it to Senators. He has left. I have it and have no problem in making it available. Jenny, who is from the Department and who works in the area of respite, and I would like to go full tilt and where we have 3-7 or 4-7, as Senator Byrne said, to be going full tilt 7-7.

Initially, I secured €10 million for respite services in the budget. I actually got an increase on that the night before the budget. The latter was not included in the budget documentation. The increase brought the total amount up to €15 million. This will address the position of the over-65s to whom Senator Doherty referred. It will also cover Saturday clubs and the provision of some level of supports to who are over 65 years of age. This was an ask from the Disability Federation of Ireland and the National Federation of Voluntary Service Providers and I have addressed it. There is work to be done with the providers. Maybe it is not with the providers people are currently going to. Perhaps maybe there is something different that could be done. The Department is working on that.

Shared care, after-school care and Saturday clubs are extremely important to me. I would also include Christmas, Easter and summer camps. To be fair, Bernard Gloster, the CEO of the HSE, is working with me. He is trying to be pragmatic and agile in how we can work with organisations that are really good and already doing it in order that we establish a routine in the lives of the young and the not so young. There are children who are transitioning and who have reached the age of 18 or 19. What we are doing is establishing a routine and stability in order that everything will not fall off a cliff when someone reaches 18 years of age.

The motion calls on the Government to increase the capital budget for respite houses and residential units and create and publish a register of respite services throughout the country. Senator Kyne brought this up. He is dead right. Community access support services are only for people who have come out of congregated settings. That is really what they are about. They do not work. In the past three budgets, I would have ring-fenced funding relating to houses. Take the example of Meath, and houses in the north of the county versus those in the south. I am not the person in the HSE with operational responsibility in this regard who should be telling the CEO where houses are needed. Those with responsibility in this area should know where houses are needed. In that context, the likes of the Brothers of Charity said "That is a great house. If we could buy that, we could have two front doors and four that could function correctly." For a child with sensory needs, the second front door would allow them to have a more quiet space to themselves. The Brothers of Charity - not only them, but also other charitable organisations - could buy that house and would have the opportunity to negotiate a revenue stream to operationalise it . This is where we need a little bit of give and take. In the context of the disability action plan that was launched, the Department of Housing, Local Government and Heritage will have to assist me in respect of that piece. There is more than €300 million allocated for housing. It is not just for housing; it is for independent living and support for independent living. There will also be a need to look at the respite element.

The motion also calls for us to create and publish a register of respite service. There is absolutely no problem doing that. It is on my desk, but I would like to have a good rattle it at it first in order to see how many of them I can bring up to full tilt.

The motion also proposes that the Government report progress on the implementation of the home care strategy. This is out of my league. I am waiting to hear what the Minister is going to say in this regard. The Minister of State, Deputy Butler, will be leading on this. The Department's position on updating the national carers' strategy is that before commencing work, consideration will need to be given to the breadth of the stakeholder consultation. Obviously, stakeholder consultation is ongoing. I will have the Minister of State, Deputy Butler, respond to all Senators on what is happening in relation to statutory home care and to the national carers' strategy, along with the progress on enhanced community care. I am aware that enhanced community care is going really well in communities. Those involved are recruiting really well. Sometimes I am a bit jealous to see what is happening on that side when I am struggling to recruit on my side.

The motion calls on the Government to "examine and report on the feasibility of providing a bespoke programme within the School Completion Programme". Work is under way in that regard. The plan identified a number of priority groups that continue to be under-represented in the context of higher education and that need additional focus and support. These priority groups include young people who are caregivers. I compliment the Minister, Deputy Harris, on what he has done in this space. The national access office at the University of Galway is absolutely phenomenal and they always look to young carers, as should all third level institutions at all times.

Senator Clonan's first amendment proposes to “abandon the proposals contained in the Green Paper on Disability Reform 2023 to medically categorise disabled citizens on their capacity to work.” To be fair, I was wondering how I was going to respond to that. Senator Cummins said that it is still out for consultation. To be quite honest, it is out for consultation and nobody is by any manner or means saying that what is out there is right. I compliment the Senator for raising this time and again. It gives everybody the opportunity to contribute to the debate and to hear from those on all sides. I do not know how anybody could medically assess 500,000 people right around the country. I am of the view that there are huge challenges in what is laid out, but this does not mean we should not see the consultation completed in order that we might be fair and transparent and hear what is being said.

The second amendment proposes: "in light of the wording in the amendment to the Constitution on Care in the proposed new Article 42B, to immediately ratify and implement the optional protocol on the UNCRPD.” I am a big fan of implementing the optional protocol. I have always said that. It is in the programme for Government. The Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, supports ratifying the optional protocol. The Senator will have had the update before. Because Senator Clonan is such an advocate for those with disabilities, I sometimes find myself repeating what I said previously to him. At this moment, there is a scoping exercise going on in relation to the optional protocol. If the Attorney General came back in the morning and said it was okay to go, I would be the first one, along with the Minister, Deputy O'Gorman, to pick up the phone and say "We are going for this". It is not that I think it would be the right thing to do: ratifying is the right thing to do, but we cannot do it without the support of the Attorney General. That is just the way it is. It is a rights-based approach. I feel strongly about that.

Tom Clonan (Independent)
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So that is a "No".

Anne Rabbitte (Galway East, Fianna Fail)
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At this moment, it is a "No".

Tom Clonan (Independent)
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The Disability Bill was a "No" as well. Every initiative that has been put forward-----

Anne Rabbitte (Galway East, Fianna Fail)
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I want to-----

Tom Clonan (Independent)
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There is no ambition.

John McGahon (Fine Gael)
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The Minister of State, without interruption.

Anne Rabbitte (Galway East, Fianna Fail)
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I hope I have addressed the issues that were raised.

Senator Boyhan challenged me to go down through the motion line by line and say what is going on. That is what I have set out here. I have not actually read my script, because it is worth responding instead to all of the Members' contributions.

With regard to where Senator Currie came from, in wanting to know that the person has accessible, regular and consistent respite, it has to be the order of the day. That is why €15 million was secured.

I refute the allegation that the Government lacks ambition. I refute the allegation that we are not doing our best. We are coming from such a low base. I challenge anybody to take my seat and see how difficult it is. It is not because there is not ambition on the part of any of the Government parties; it is because of 100 years of underinvestment and under-prioritisation in the area of disability.If we can compliment this Government on one thing, it is that we had the backbone to take disability out of the Department of Health, bring it over to the Department of equality and adopt a rights-based approach. That has to be the first turning of the dial. The second turning of the dial is developing an action plan that acknowledges the unmet need, the underfunding of providers and the resulting deficit which prevents them from functioning properly and providing services. How can we think it is okay to have 100 beds on an annual basis to meet emergency cases? That is not okay, by any manner or means. The disability action plan that is set out for the next three years is ambitious in relation to respite care, residential services and personal assistant supports. If I am not in this role from 2027 onwards, I challenge whoever is the incumbent to keep going forward and building on that action plan. From 2019 to date, €700 million has been added to the budget. It is only in the time to come that we will see the ambition that has been forged under this Government, that makes me proud to say I am the Minister of State with responsibility for disabilities, come to fruition.

John Cummins (Fine Gael)
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Well said.

Mary Seery Kearney (Fine Gael)
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How do I follow that? Well done. I am very proud to have worked with Deputy Rabbitte as Minister of State with responsibility for disabilities and I absolutely stand by her. There is real ambition here. There is an understanding of what should be and what can be. There is no point in anybody standing up here and pretending that things can be fixed overnight but they can be set on a route that ensures a rights-based approach is delivered by this Government, and subsequent governments, on a consistent basis. There has been an increase in spending and in commitment. There has been a wrestling with things. The Minister of State has grabbed things by the scruff of the neck and has been amazing in that regard. I can stand up here and give out about the things that are not happening, not because there is a failure of passion or action on her part but because I know we have a Minister of State who is prepared to deliver as much as is possible. We said, for example, that we should scrap the panel system because it is terrible and that is now happening. In fact, we can look at various counties and assess whether that is happening, how it can happen and whether it can be done elsewhere. I know there is real commitment there.

I had to deal with Mr. Bernard Gloster in the context of Tusla, the mother and baby homes and related issues and he was fantastic. He took a personal interest in anything that I asked him to do. He went way beyond what would ever have been expected of him. Having him at the helm of the HSE is really welcome. It is fantastic.

We need discretion and we need to be nimble and agile, to use the business terms. We need a nimble and agile approach to cater for what is needed. All of that is really important. I will quote from the Green Paper to repeat the point Senator Cummins made earlier about what such a paper entails:

A Green Paper is a Government proposal on how to improve something or solve a problem. It doesn’t claim to be the best way or the only way – its real purpose is to encourage thinking and discussion, and to prompt suggestions.

The consultation period is ongoing. It was due to close in December but the Minister, Deputy Humphreys, extended the deadline to 15 March. Some people have made submissions already and everyone is welcome to do so. I would encourage people to get in there, criticise the things they do not agree with and put them on the record. The idea of scrapping the Green Paper and saying that we will just bin all of the suggestions is disrespectful of the hard work that has gone into the consultation process and into the submissions that were made. I know that the disability sector is unhappy with some of the proposals in the Green Paper but the point is to get in there, critique it, and use it to stimulate discussions about what should be there. The note I got from the Taoiseach's office indicates that it is not a final design for reform. It is not final. The whole point of the consultation is that it is not final.

On the optional protocol, I am very much a champion of the need to ratify it, as is the Minister of State. We need to ratify and implement it as quickly as possible. I would point out that a commitment was made that once the Assisted Decision-Making (Capacity) Act was in place we would be able to move on. I know that from discussions at the disability matters committee and the children's committee. It does feel like we are reneging on that commitment, although I know in my heart we are not. We need to figure out what the impediments are. I understand that there are human resources issues, reports to be finalised and so on and at the same time, we are desperately trying to deliver services. We need all hands on deck to make sure we are doing that. I understand that but it is included in our motion and as a consequence, I will not be supporting the amendment.

I want to give the final word to parents. I have spoken about people who have spoken out publicly but I have not spoken about the people I know privately with whom I have sat and cried in their kitchens. As Gail, the mother of Luka, said, "We have been left to rot.". She spoke about being incarcerated and invisible. Whatever we do, we must challenge that feeling and experience and reassure people. I believe that coming from today's motion, there will be a reassurance that we most certainly hear that but we are not just empathetic for its own sake - with every fibre of our being we are delivering and making sure that situation is no more.

John McGahon (Fine Gael)
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Senator Clonan, are you pressing amendment No. 1?

Tom Clonan (Independent)
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I watch my child deteriorate every day and I am powerless to intervene. There are tears shed in my house every week. I am sorry that the Minister of State is upset but I make no apologies. My intention was not to hurt her feelings. The trauma, pain and suffering of parents, including those whose children are being paralysed for lack of intervention, is immeasurable and yet no Minister came in here this morning for a Commencement Matter debate. There is no monopoly on tears. I am sorry that I upset her but I make no apologies for making the case for these children.

I wish to press the amendment.

Tom Clonan (Independent)
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I move amendment No. 2:

After the last paragraph under “calls on the Government to:”, to insert the following paragraph: “- , in light of the wording in the amendment to the Constitution on Care in the proposed new Article 42B, to immediately ratify and implement the optional protocol on the UNCRPD.”.

Victor Boyhan (Independent)
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I second the amendment.

Mark Daly (Fianna Fail)
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When is it proposed to sit again?

Regina Doherty (Fine Gael)
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Tomorrow at 9.30 a.m.