Dáil debates

Thursday, 7 December 2023

Delivery of a Rights-Based Care Economy in Ireland: Motion


1:15 pm

Photo of Ivana BacikIvana Bacik (Dublin Bay South, Labour)
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I move:

That Dáil Éireann, in accordance with the recommendation of the Women's Parliamentary Caucus:

acknowledges that:
- the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) requires a significant social transformation from a medical approach to disability, where economic development, health, and care economies can sustain the violation of human rights through a lack of rights based care, and where people are institutionalised in residential care settings, or in their own homes without access to the community, to a social or human rights approach where individuals receive rights-based care in the community, and are supported to live with their families, or independently in the community, and have a better quality of life;

- the report by Ursula Barry, Emeritus Associate Professor, entitled "The Care Economy, Covid-19 Recovery and Gender Equality" highlights how the care economy in Ireland relies heavily on the private marketplace and informal family and community networks to access care, and while the State funds a significant amount of formal child and long-term care, it is delivered mainly by private-for-profit services, and in contrast to paid work, participation and the time people spend in informal care activities is rarely measured;

- as highlighted in the Oireachtas Joint Committee on Disability Matters recent report entitled "Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities", there are concerns regarding a lack of co-ordination, organisation, and oversight, as well as policy implementation with regard to voluntary services who are delivering disability services in the community in Ireland, and this has significantly impacted the development of community infrastructure, planning and services, to provide people with adequate support to live with their families or independently, and fulfil requirements of the UNCRPD;

- homecare services in Ireland, which allows people to receive health, social and personal care within their home, also need urgent reform, regulation, and standardisation to establish equity in service provision, and ensure their quality and safety, while ensuring that the services facilitate rights-based care;

- Ireland is undergoing a major demographic shift to an ageing and disabled population which is significantly increasing levels of caring responsibilities, while adding significant pressure on informal family and community networks;

- as highlighted in Family Carers Ireland report entitled "State of Caring 2022", the lived experience of those providing informal care in Ireland reflects a stark reality where carers are experiencing significant poverty, loneliness, social exclusion and reduced physical and mental health, without access to essential supports;

- there are other carers, outside family carers, who are caring for someone, including foster carers, who need additional support to provide rights-based care;

- a UK research paper entitled "Developing a clearer understanding of the Carer's Allowance claimant group" highlights that because of the diversity of carers' circumstances and characteristics, for example, the level of care an individual carer provides varies according to the needs of the person they care for, the extent to which they have other support with their caring role as some have to give up work, or some carers may be younger, while others are older and need more support, there is a need to adapt benefit systems to make them more responsive to individual carers' needs;

- there is a need to develop Ireland's Care Economy in line with the UNCRPD to realise rights-based care, while redistributing funding to support informal family and community care networks to deliver equity in access to services and better outcomes for the people that receive care, along with ensuring effective early intervention, supported independent living, adequate carers welfare supports and in home and community supports for those who are being cared for, to live at home; and

- both the deeply gendered division of caring responsibilities in society, and the need to ensure that a higher value is placed on care and caring roles, both of which issues are recognised and addressed in the recommendations of the Citizens' Assembly on Gender Equality and in the set of actions proposed to progress those recommendations as contained in the December 2022 report of the Oireachtas Joint Committee on Gender Equality entitled "Unfinished Democracy: Achieving Gender Equality";
further acknowledges:
- delivery of the Carers Guarantee will allow Family Carers Ireland to deliver a core basket of services to family carers across the country, regardless of where they live;

- Government spending on social protection schemes, public services and taxation, which broadly contribute to the Care Economy, has increased significantly in recent years from €8.8 billion in 2019 to a projected spend of €10.6 billion in 2023, which equates to an increase of 21 per cent;

- the National Carers Strategy published in 2012 was instrumental in raising the profile of carers and unpaid care, recognising the significant contribution carers provide to the State and highlighting the model and framework for positive collaboration between Government and the care sector;

- the National Carers Strategy 2012 was developed before Ireland ratified the UNCRPD and at a time of significant economic challenges and public financial constraints which led to limited progress, developing longer-term commitments for carers and implementation of the forty-two actions it contains on a cost-neutral basis; and

- the UNCRPD Implementation Plan which will outline how the Convention will be implemented, along with rights-based supports for family and home life has not yet been published;
notes that:
- there is a need to acknowledge and meaningfully support carers, who are fulfilling Article 23 of the UNCRPD, by caring for their loved ones in the family home and in the community, as opposed to that individual being placed in a long-term residential care setting, which through a lack of support, may become the only option;

- there is also a need to significantly increase residential places for people in disability residential care/supported housing to address a substantial backlog of need for the significant number of people with extremely high support needs, whose current living arrangements with their families are no longer sustainable;

- individual's rights must be upheld in these residential care settings and housing must be made available in the community in line with Article 19 of the UNCRPD;

- respite is identified by carers as crucial for their wellbeing and quality of life and is a key support to families to care for their loved ones in the family home as opposed to placing them in long-term residential care;

- the Government has committed to develop a new centre-based respite facility in each Community Healthcare Organisation, however, access to respite care is inconsistent throughout the State and rather than increase over recent years, respite provision has fallen and does not address the latent unmet need which the Disability Capacity Review to 2032 suggests requires an investment of €16 to €20 million annually;

- the Disability Capacity Review to 2032 also estimates up to 3,900 extra residential places are needed by 2032 costing €550 million annually, however, because of the crisis management in the residential care placement process respite capacity can be used to fill the demand for residential care, which limits families access to respite as a resource to maintain resilience;

- the Programme for Government: Our Shared Future has committed to introducing a statutory scheme to support people to live in their own homes, however, homecare providers across Ireland have for many years faced a staffing crisis, whereby people who are medically assessed by the Health Service Executive as needing homecare are not able to access home supports due to a shortage of staff;

- over one third of those currently on a waiting list for homecare supports or a homecare package are waiting over two years for the service; and

- the Government has committed to holding a referendum in 2023 to implement the recommendations of the Citizens' Assembly and the Oireachtas Joint Committee on Gender Equality, in order to insert a specific provision into Article 41 of the Constitution of Ireland to recognise and acknowledge the value of care in Irish society;
in the absence of a new strategy for carers, with regard to progress on relevant measures to date, and to ensure transition to a rights-based approach to care, calls on the Government to immediately deliver on commitments that support carers as outlined in the Programme for Government: Our Shared Future, and consider additional measures where appropriate, including:
- establishment of the Commission on Care immediately and extend its remit to include all types of care, including disability and delivery of rights-based care in line with the UNCRPD;

- ensure that elderly carers who are providing informal care in the home can access support as a priority and increase residential places to address the substantial backlog of need for the significant number of young people with very high support needs, whose current living arrangements with their families are no longer sustainable, while ensuring that individuals rights are upheld in these settings;

- provide access to the State Contributory Pension to those in receipt of Carer's Allowance and include a pension solution for foster carers; and

- ensure implementation of the Programme for Government: Our Shared Future commitment to the delivery of a Carers Guarantee to allow Family Carers Ireland to deliver a core basket of services to family carers across the country, regardless of where they live;
further calls on the Government to immediately implement provisions that support carers under other sectoral policies and consider additional provisions where applicable, such as:
- ensure carers needs are reflected in the UNCRPD Implementation Plan as well as providing standard training for all carers on the provision of rights-based care in line with the Assisted Decision-Making (Capacity) (Amendment) Act 2022;

- continue to develop carer prevalence data to inform policy, service planning and delivery;

- ensure equality-proofing of budgetary policy and consideration that welfare changes disproportionally impact households affected by disabilities;

- prompt national rollout of InterRAI Single Assessment Tool as the standard assessment tool for care-needs and ensure that individuals with disabilities of any age can access the new home support scheme;

- ensure additional funding for the National Treatment Purchase Fund to enable it to be extended to include clearing the waiting lists for paediatric interventions and essential therapies by treating these children through the private system;

- ensure the accessibility and availability of in-home and community-based services for families with a member with a disability, including biological and foster families of children with disabilities, and in particular families of children with autism or who are caring for individuals with dementia, for example, Personal Assistant Services and additional access to homecare services, to guarantee enjoyment of the right to family on an equal basis with others;

- collect and report disaggregated data on the availability of community-based supports for families of children with disabilities, and the number of families who access those services;

- develop resource networks of support at local levels, i.e., parent's groups;

- within the statutory home support scheme introduce a provision for a right to a minimum 20 days per year of respite and the right to a Family Carer Needs Assessment, including foster carers;

- immediate alleviation of waiting list for respite provision; and

- increase the maximum grant limits, income thresholds and disregards under the Housing Adaptation Scheme, and remove the need for assessment of the income of other adults living in the household not in full-time education; and
furthermore, calls on the Government to consider and fund additional measures to support carers in Budget 2024, to:
- ensure the inclusion of carers needs in legislation which will extend and enhance the rights of carers aligned with the UNCRPD, with the purpose of better supporting carers on a more consistent basis so that they can continue to care, if they so wish, in good health and to have a life alongside caring;

- undertake a review of the cost of caring and assess how current social insurance schemes for illness, disability and carers can be efficiently used to provide income supplements to carers in Ireland to address rising costs of caring, and in the interim increase thresholds from 18.5 to 22.5 hours per week if an individual receives Carers Allowance, Carers Benefit or the Carer Support Grant, and this review must be completed before the cessation of this Dáil session and consider:
a) the impact on education and employment;

b) full removal of ceilings on number of hours in paid work outside of the home for those in receipt of Carers Allowance;

c) developing access for carers to avail of Back to Education, INTREO schemes etc., and ensure that Carers Allowance is a qualifying scheme for training supports; and

d) enabling access to the SUSI grant for carers undertaking part-time study as well as providing direct funding/subsidisation to enable the undertaking of QQI level 5 health care courses;
- develop individualised means-testing for Carer's Allowance and increase thresholds to include the costs of caring and to reflect a more needs led payment including how to provide additional access for full time family carers to Back to School and fuel allowance, and in the interim introduce a living wage/basic income for carers by increasing Carer's Allowance to the equivalent amount of the artists basic income at €325;

- introduce "Care Credits" for people who do not qualify for Carer's Allowance but should still accrue credits in order to remain within the social protection system;

- develop a central database of individuals who have applied for or who are actively aware of who needed a disability service, such as a residential service, enhanced support in an existing residential place, or other non-residential services such as respite or home support that fully captures the level of unmet need in the system;

- introduce care coordinators within local health areas;

- introduce a mechanism under the Fair Deal scheme to develop an equitable system for community/long-term care as well as developing discharge planning; and

- ensure that the promised referendum to amend Article 41 of the Constitution of Ireland to provide for the value of care in society is held in 2023.
As the proposer of the motion, I will contribute to open the debate and to close it, as I understand, and I very much welcome the opportunity to do so. This is an important motion, as the Minister of State is aware. It originates from the recommendations of the Irish Women's Parliamentary Caucus, of which I am honoured to be vice-chairperson, or deputy chair. It is in this role I am proposing the motion today and closing the debate on the floor of the House. I pay tribute to the chairperson of the women's caucus, Senator Fiona O'Loughlin, and to the secretariat, and in particular Eva Nolan and Brenda McCauley ,who played an important role in drafting the motion with input from the caucus working group.

I must also put on record that the existence of the caucus is very important. We established it in the previous Dáil and Seanad term with Deputy Catherine Martin, now Minister, as our chairperson. I was honoured to be part of the caucus during that parliamentary session also. The caucus played a very strong role in supporting me when I chaired the Vótáil 100 programme in 2018 to mark and celebrate the centenary of women's suffrage in Ireland.The women's caucus has been a very important entity and I am really glad to see it continuing to play an integral role within the Oireachtas in carrying out actions such as drafting this motion and ensuring that care is to the fore in our work in the Oireachtas.

Gratitude is also owed to the many stakeholders who contributed to the text of this motion, to individuals and organisations including Family Carers Ireland, Professor Ursula Barry, and many others.

As the former chairperson of the special Oireachtas Committee on Gender Equality, the issues that feature in this motion are close to my heart because of course care was very essential to the recommendations of the Citizens' Assembly on Gender Equality and thus very central to our recommendations within the Oireachtas Committee on Gender Equality. That citizens assembly was chaired by Dr. Catherine Day and their report produced 45 recommendations. Our work as a special committee over the course of 2022 was focused upon devising an action plan for the implementation of the 45 recommendations. In our view, those recommendations amounted to a blueprint for achieving a truly gender equal Ireland. It is almost exactly one year ago, on 15 December 2022, that we launched our report from the Oireachtas Committee on Gender Equality, which we called Unfinished Democracy because until we achieve an equal society in which men and women are truly equal, our democracy will be unfinished. Nowhere is that more evident than in this Chamber where fewer than one quarter of our TDs are women. That is shamefully low at 23%. My by-election in July 2021 brought the numbers up to 23%, and now it is 37 out of 160. We very much hope to see a higher number and higher proportion of women TDs in the next Dáil. We do need to ensure more equal representation of women and of men.

At the launch of our report last year, where we made the point very forcefully about the lack of women in politics along with our recommendations on care and other issues, we saw the Leinster House AV room packed with stakeholders from civil society groups, academics, and many of those who lived experience of gender discrimination and who had engaged with us and with the citizens' assembly. We heard from those present at the launch of our report one year ago a strong expression of a real desire to see the report's recommendations implemented and to see the actions that we had recommended taken up by the Government and progressed over the coming term. We are now a year on and while there has been some progress, we see there is still a long way to go. In that context, I did welcome the announcement by the Government this week of progress on the referendum we had recommended to amend the Constitution and in particular to amend Article 41.

Our recommendations built on recommendations numbers 1 to 3 of the citizens' assembly. The assembly recommended that Article 41 be amended to delete the sexist text that stereotypes women and mothers in Article 41.2; it also recommended the replacement of that sexist text by a clause enabling a true recognition of the value of care in the home and wider community. Another crucial recommendation on constitutional change was to provide for a more inclusive definition of "family" beyond the family based on marriage.

I welcomed progress this week finally with the Government announcement, one year on from our report, that it would hold a referendum on these recommendations relating to Article 41 in March of next year. Nonetheless, I was disappointed the recommendation on the care reform of Article 41.2 fell short of what we and the citizens' assembly recommended. The definition of "care" the Government proposes in its new Article 42B is limited to care between members of a family. That is not sufficiently expansive to cover the real diversity of care provision. We heard, for example, about care provided by family members and voluntary carers, as well as that provided by those paid to provide care work. There is a myriad of ways in which care is provided and needed by individuals and society. It is disappointing the Government wording falls short of what we and the citizens' assembly recommended. We achieved a cross-party consensus on the wording we proposed last year. Civil society groups by and large strongly supported it too. It is a missed opportunity this week. We should have seen a celebration from civil society of the announcement of the referendum; instead, we are seeing at best a lukewarm response, with groups like the National Women’s Council saying it will consult with members on the care proposal.

The provision to extend the definition of "family" is welcome. We will tease out the wording. It is not quite the wording we recommended but it is a change we can all welcome wholeheartedly and which will address cases like the sad case of Johnny O’Meara, which I have raised many times in this House. That is important. He was not eligible, it seemed, for State benefits because he and his partner had not been married before she tragically died.

The motion deals with care on a much broader basis and in responding at the end of the debate I hope to address the other issues dealt with in the motion. The motion draws from the Joint Committee on Disability Matters and from our gender equality committee. Its primary focus is monitoring Ireland’s implementation of the UN Convention on the Rights of Persons with Disabilities. Ireland signed up to that convention in 2007 and ratified it in 2018, but it will not be controversial to say in this House it does not yet permeate our care systems. The Minister of State will probably agree with that. Our care system continues not to meet the needs or protect the human rights of disabled persons.

I have come, as others have, from outside the front gate of the Dáil, where we were met with a coalition of disabled persons organisations coming together under the banner of scrapping the Green Paper on disability reform produced by the Department of Social Protection. There is a growing momentum of concern among disability rights and disabled persons organisations about the Green Paper. Will the Minister of State address that? I committed to the organisations I would raise that on the floor of this House.

Our other event this morning relevant to this debate was the launch by the family carers organisation of its score card for 2023. I was glad to attend that this morning and hear poignant stories of failings in the care system, particularly for parents of children with disabilities, and ways in which we are still not meeting the needs of such children in our school system or our care system more generally.

This important motion raises concerns about the issues I have just referenced, namely, the concerns disabled persons have about social protection and the concerns family carers have about lack of supports, particularly for children with special needs or disabilities. Some of the key calls in the motion relate to the needs of disabled persons and children with special needs.

On home care workers, Labour recently tabled a motion in this House seeking greater support from Government for those providing care in the home, employed by HSE or by organisations contracted by the HSE. Home care workers are many of the unsung heroes in our healthcare and social care services. They are underpaid, overworked and there is not enough of them. There have been issues with recruitment, as was raised in the Dáil debate on the Labour motion. Much of that relates to better pay and conditions. That needs to be addressed.

I will raise more issues in the follow-up but I ask the Minister of State whether progress has been made on pay parity for those working and providing care in section 39 and other organisations contracted by the HSE. The workers do the same work as HSE employees but do not, in many cases, get the same level of recognition.

I look forward to returning to some of these issues at the end of the debate.

1:25 pm

Photo of Mary ButlerMary Butler (Waterford, Fianna Fail)
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I welcome the opportunity to address the Chamber on the important issues raised by the Irish Women’s Parliamentary Caucus in their motion on delivery of a rights-based care economy. I acknowledge the work of the chair, Senator Fiona O'Loughlin, and deputy chair, Deputy Bacik, who put many hours of their time into driving on the caucus, and have done so for many years. I thank them for that.

The Government is committed to ensuring the rights of everybody with care needs are upheld in accordance with their needs and preferences throughout their lives. I am pleased to support the motion. We recognise the invaluable contribution that family carers make in caring for some of the most vulnerable in our society and we are committed to ensuring that carers are fully supported and empowered.

The motion covers many Departments but I will focus on older people’s health and social care services and social protection supports for carers. My colleague, the Minister, Deputy Browne, will speak later about the Government’s work to support the rights of people with disabilities.

The Government is committed to supporting older people to age in place in their communities. With its emphasis on reorientating the model of care towards primary and community care, the ongoing Sláintecare reform of our health and social care system, led by the Department of Health, aims to support people with care needs to live independently in their own homes and communities for as long as possible.

The Government has invested an additional €228 million in home support services since budget 2021. The delivery of home support hours is increasing year on year. We expect to deliver 21.5 million home support hours in 2023, increasing to 22 million hours in 2024. This is more than ever before. In addition, a minimum of 18% of new home support hours are ring-fenced for people with dementia in 2024, up from 5% in 2021. There are now over 54,000 people receiving home support services, with almost 75,000 people benefitting from the service last year. All home support hours for 2023 are fully funded, including those on the waiting list.

In terms of waiting lists, the latest figures show there are a total of 3,084 new applicants approved for funding and waiting for supports. There are 2,902 people already receiving supports but not yet receiving the maximum hours advised. This is down considerably from the start of 2020, when the total number of people waiting for home support was over 9,000, but we have a lot more to do.

In order to continue to expand the provision of home support services, we need to address workforce challenges in the sector, particularly the shortage of care workers.

We continue to advance the implementation of the 16 recommendations of the Report of the Strategic Workforce Advisory Group on Home Carers and Nursing Home Healthcare Assistants as an immediate priority. A progress report was published on 16 October. As recommended by the advisory group, 1,000 employment permits for non-EU or non-EEA home support workers were authorised last year and commenced in January. Approximately 330 permits have been availed of to date.

A new and improved HSE home support tender has been in place since August this year. This delivers on commitments for sectoral reform, such as payment for travel time for home support providers, paying carers the national living wage, at a minimum, and bringing legacy rates in line with the new revised rates of funding.

In response to the Deputy’s question, we have not been made aware personally or in the Department that the living wage is not being passed on to employees. That is something I am monitoring.

The triangle of supports of home care, day care and meals on wheels, including dementia-specific supports, are a key factor in supporting older people to age well in their own homes. Some 323 of our vital day centres have reopened following the Covid-19 pandemic. Earlier this year I announced increased funding for day centres and to expand the meals on wheels network, which provided an estimated 2.7 million meals across the country. The budget allocated for meals on wheels will increase by €1 million next year to €6.2 million. I thank all those involved, including all the volunteers who work across the meals on wheels sector.

An additional €2.2 million will be provided for day care services in 2024. We know that day centres are a crucial part of social care provision in our communities and an important resource for carers, providing a break from the caring role.

Regarding dementia-specific day care, in 2023 the Government allocated €2.1 million to allow dementia day care services to reopen to full capacity and I am pleased to note that the Alzheimer Society of Ireland opened its 52nd day centre recently. In budget 2024, I have secured an allocation of €500,000 to increase the provision of in-home dementia care for people who cannot or do not wish to attend in-person day care services. A further €300,000 will be provided for weekend activity clubs for people with young onset dementia. Yesterday, I met some of the committee for the Alzheimer's Christmas jumper day, and their plans for these weekend activity clubs are under way and will commence very soon.

The development of the statutory home support scheme, to which the programme for Government commits, is well under way within the Department of Health. The preparation of primary legislation for the licensing of home support providers, regulations to underpin the new licensing regime and national standards to support the ongoing quality enhancement of home support services are all in train. Importantly, the regulation of these services will help to safeguard everyone who uses the service and ensure that all service users receive a uniformly high standard of home support when they need it and wherever they may be.

As part of the development of the statutory scheme, a reformed model of service delivery for home support has been piloted across four sites. The Government is committed to the national roll-out of interRAI as the standard assessment tool for the care needs of older people, and the HSE has begun the recruitment of 128 interRAI care facilitators. A national home support office is being established and work is under way to procure a bespoke IT system. This is one of the key issues we are dealing with at the moment, the importance of having an IT system. The Government’s commitment to ensuring that citizens receive timely, high-quality, person-centred integrated care in the most appropriate setting is also reflected in the countrywide establishment of community specialist teams for older persons under the enhanced community care programme.

In the programme for Government, the Government committed to establishing a commission to examine care and supports for older people. The proposal for the commission that I and the Minister for Health brought forward was approved by the Government on 3 October this year and €1.24 million was secured in budget 2024 to support the commission’s work next year. The commission will examine the provision of health and social care services and supports for older persons and will make recommendations to the Government for their strategic development. A cross-departmental group will be established under the auspices of the commission to consider the supports for positive ageing across the lifecourse.

The work of the commission will be cognisant of the need to ensure continuity of care for persons with disabilities when they turn 65 and, more broadly, of the need to ensure that the care and support needs of older persons with disabilities are met in accordance with Ireland's obligations under the UNCRPD. The commission will be formally established in early 2024, and we are currently close to appointing a chairperson for it.

The Government recognises the invaluable contribution made by family carers to care provision in our society. We have delivered on the commitment in the programme for Government to introduce a carer's guarantee that will provide a core basket of services to carers across the country, regardless of where they live. Since 2021 we have invested €2 million each year in these services. A total of €1.9 million is being provided to Family Carers Ireland to deliver a mix of community and individual supports to a minimum of 5,000 new carers annually, including counselling and intensive supports. Some €100,000 is provided to Care Alliance Ireland, which operates a professionally-moderated online carers’ support group. A pilot of the interRAI family carer needs assessment tool has also been undertaken in HSE community healthcare west with a view to establishing a standardised mechanism for assessing carers’ needs.

Respite care is a vital resource to support older people and their carers, and this is reflected in our investment of approximately €62 million in respite beds for older people’s services each year. In addition, in June 2021 the HSE, in partnership with Family Carers Ireland, launched the home support emergency respite scheme, with funding of €600,000 to provide a total of 27,000 hours of respite care to unpaid carers who require additional emergency respite. The HSE has committed to continue providing emergency respite supports in 2024.

In the area of social protection, the main income supports to carers are expected to amount to almost €1.6 billion in 2023, of which expenditure on the carer's allowance scheme is estimated to be over €1 billion. While the carer’s allowance is means-tested, there are a range of other supports for carers provided by the Department of Social Protection that are not based on a means assessment, such as the carer’s support grant, carer’s benefit and the domiciliary care allowance. As part of budget 2024 there has been a significant improvement to payments for carers, as well as lump sum payments.

The Government is also putting in place measures to enhance State pension provision for carers who have spent more than 20 years of their lives caring for an incapacitated dependant. The legislation to give effect to this change was introduced in the Dáil on 22 November and is expected to be enacted by the end of the year.

The supports delivered through the health and social protection systems, and the planned improvements that I have outlined, all contribute to the delivery of the rights-based care to which the Government is committed.

1:35 pm

Photo of David CullinaneDavid Cullinane (Waterford, Sinn Fein)
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First, I want to commend the Women's Parliamentary Caucus, and the chair and vice chair, on their work on this comprehensive motion that raises a number of issues across the formal and informal care sectors. I welcome the debate today on behalf of Sinn Féin. I express our support for a rights-based approach to care, and the right to care.

I am glad that the Minister of State supports the principles in the motion but I have three major problems with the Government's doublespeak on these issues. First, Government parties have failed for nearly 20 years to ratify the optional protocol to the United Nations Convention on the Rights of Persons with Disabilities. Second, the Government has failed to regulate the home care sector, to provide for statutory access to home care, and to reverse the privatisation of that sector and the long-term residential care sector. Third, the Government has failed to move from an eligibility-based health and social care system to an entitlements-based system, as we all agreed should be a part of Sláintecare.

The fact is, this Government sees rights as a dangerous risk to the Exchequer, as is evident in its abysmal record on services for people with disabilities. There are 6,500 children on waiting lists for an overdue assessment of need and 5,000 of them are waiting over a year. When their parents had the audacity to challenge the Government's failures under the Disability Act 2005, as the Government saw it, it forced them to back down or take the State to the courts, with all the financial risk that this entailed. Eventually, some brave parents did exactly that and they won. The consequences for the HSE have been enormous because it is not capable of servicing the level of need that is out there due to decades of neglect. There are 15,000 children waiting just for initial contact with their special disability team. Some 10,000 of them are waiting over a year. Nearly half of those children live in north Dublin or in the south east. They are in East Wall, Ballymun and Blanchardstown, or Waterford, Wexford, Carlow and Kilkenny, some of the most underserved and disadvantaged communities in this State.

Children from hard-working, working-class families whose parents cannot afford private care have been deprived and forgotten. When the Government inevitably says, as the Minister of State did, that an assessment of need is not required for access to services, the Minister of State is deliberately speaking beside the point because there is no access to services either, not to mention that it is required for the Departments of Education and Social Protection.

When I ask the HSE how many children and adults are waiting for other disability services, I get the same predictable reply that there is no centrally-maintained waiting list for these services. One could be forgiven for thinking that this Government just does not want to know. Behind every number is a child or an adult and parents in need of services and support who are being completely ignored. Is it any wonder that Fianna Fáil and Fine Gael have refused to ratify the optional protocol to the UNCRPD, for fear that someone might force them to recognise the rights of people with disabilities, to plan for their needs and provide the supports and services they deserve? This attitude underlines exactly why there should be a legal right to care, a legal obligation on the State to provide care, and legal recourse where the State fails to provide that care.

As with disability services, this Government has failed to deliver sufficient quality care for older people or put in place a statutory home care scheme.

These people have worked and contributed throughout their lives and expect little but get even less. The Government has not adequately regulated the home care sector. It only belatedly mandated a living wage for home care workers this summer and paid for it by cutting the overall budget provision for home support hours. The Government failed to link these standards to home care services for people with disabilities, which means it now expects providers and carers to do the most complex work for less pay. By delaying the regulation of home care and cover of travel and subsistence for carers on the same basis as direct HSE employees, the Government is punishing the non-profit community sector for offering higher employment standards at a time when enough home care workers cannot be recruited or retained. Not only has the Government failed to take advantage of the non-profit sector, it has also pitted it in a race to the bottom against for-profit providers. Over decades, Fianna Fáil and Fine Gael have repeatedly offered up the care economy as a cash cow for wealthy investors. This Government has no notion of rights-based care. One of the few provisions in law for a rights-based approach is for children in the assessment of need. The Government's track record since the enactment of the 2005 Act, which provided for that right, is awful. A High Court challenge found that the Government was in breach of the law. That speaks volumes.

1:45 pm

Photo of Patricia RyanPatricia Ryan (Kildare South, Sinn Fein)
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The level and quality of care available and provided to our elderly vulnerable people and those with disabilities is a vital issue. I welcome the opportunity to speak on this matter today, for which I thank the Women's Parliamentary Caucus. As Sinn Féin spokesperson for older people, I am aware of the difficulties our older, more vulnerable citizens experience in accessing health and home care, especially in rural areas. Ireland has the fastest ageing population in Europe; 15% are 65 and over. That percentage is predicted to grow to 26% by 2051. We need adequate services for our older, vulnerable and less-abled people in health and home care. We need community services to allow them to live their lives to the fullest extent. We do not have those services. Instead - at the risk of repeating myself - we have a recruitment retention crisis among healthcare workers, difficulty assessing community care, overcrowded hospitals, bed shortages in hospitals and nursing homes, overreliance on the private sector for care provision, no right, as of yet, for a care partner and insufficient housing adaptation funding. I am dealing with a lady in my constituency who has been waiting for a carer for eight weeks. She is down to about 3 stone and has nobody to look after her. It is a disgrace.

The Minister has been in government in one capacity or another for the past 12 years. These issues have only got worse, not better. It is beyond farcical that this Government, effectively ag caint le dhá bhéal supported the living wage motion for care workers this year, only to do a U-turn and cut funding to home help hours to cover the cost. We need a Government that will prioritise a system that cares for all of us as we age, now and for future generations. In government, Sinn Féin will commit to building a fit-for-purpose health service to provide the care our older and vulnerable citizens need by enabling them to live independently for longer in their own homes with adaptation grants to bring their homes up to the standard they should be and with home care or residential care, if that is their preference. We will also introduce a mandatory living wage to include work-related travel expenses to combat the recruitment crisis in home care. We are aware that everyone is not getting that wage. We will provide funding to improve access to social and community supports and more hospital beds to ease pressure on hospitals. Change is needed and change is coming. Sinn Féin is that change.

Photo of Réada CroninRéada Cronin (Kildare North, Sinn Fein)
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I am glad to have the opportunity to speak on this motion on a rights-based care economy with my colleagues in the women's caucus and the gender equality committee set up after the citizens' assembly report. We all know that if carers downed tools for even a day, our economy and society would grind to a halt, except, carers, of course, would not do that, which governments know. In so many cases, they are motivated by the one thing that leaves them exhausted yet tireless and entirely unprotected in their work of caring, which is their love for the person they care for. It is significant that the motion was brought forward by the Women's Parliamentary Caucus, women being, time and again, the carers for a beloved child with profound disabilities or for a parent with dementia or issues related to old age. Our men are equally outstanding but, by and large, it is women who do most of the caring. Many of our carers lose their own health and lives in trying to take care of the health and lives of those they care for, from lack of money, rest, support, social contact and access to the most basic services. There is no one to take over regularly and no compassion by the State, which demands endless form-filling. They do not even have time to be sick, never mind going to the doctor or being able to give themselves a chance to recover. When that caring finishes, usually through bereavement, and all their work is done and all the love they felt is still there, they are left to pick up the pieces of their broken lives, damaged health and precarious financial positions. We all praise them and tell them they were great and how devoted they were; that is about it. I say this on behalf of many people in north Kildare who have to spend their lives fighting for every little thing. They would give anything to keep their beloved relative at home instead of putting them into long-term care if only they had the proper supports. We need compassion in our care policies and all Departments that deal with them. We need mercy, respect, dignity, oodles of cop on and, above all, the ability to stand in the shoes of carers, shoes that are too old, worn and tight because of the constant demands on the people who wear them. I reiterate Deputy Cullinane's call on the optional protocol. It was one of the issues I brought up. It is essential that we adopt it because we need a rights-based system, not just grants and political favours. For the season that is in it, I wish carers across County Kildare and the country and the Minister of State and her staff a happy Christmas. It feels a bit early to say it because I do not have my tree up yet. I thank them for all their help.

Photo of Róisín ShortallRóisín Shortall (Dublin North West, Social Democrats)
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Successive governments have undervalued and under-recognised care and unfortunately, very little has changed in the last three and a half to four years of this Government. It seems that care is increasingly viewed as a commodity, with private providers operating almost 80% of nursing homes, while only 39% of home care hours are provided directly by the State. However, this rampant outsourcing is a more recent phenomenon, particularly in the home care sector. In 2006, funding to private home care providers stood at just €3 million but by 2019, had risen to €176 million. It is welcome that additional funding is going into this sector but why is it all going into the private sector? We know the impact of that. When more money goes into privatising services and outsourcing, we see the monetisation of those services and wealth extraction from them. That is not in the country's interest, nor is it in the interest of those in receipt of care. It is an abdication of responsibility on behalf of the State. This dramatic shift happened with very little co-ordination or consideration from the State, leaving in its wake a largely unregulated sector with poor pay and conditions.

This damaging legacy could be addressed in part through full implementation of the strategic workforce advisory group’s recommendations and the introduction of a long-promised statutory home care scheme, which we are still awaiting. In 2018, a statutory right to home care was first promised, with a 2021 target for delivery. Here we are, almost in 2024, and there is still no scheme. This Government needs to accept that a fundamental reconfiguration of elder care is required. The State’s overreliance on nursing homes, which are overwhelmingly private, cannot continue. We also need to start a serious conversation about the deprivatisation of care and begin investing heavily in our public care infrastructure, as recommended by the Irish Human Rights and Equality Commission in July. During the early days of the pandemic, the Taoiseach and the then-Minister for Health both recognised that the current model was no longer fit for purpose but that seems to have been forgotten. They said very clearly in response to me in the Chamber that the model of care for older people was no longer fit for purpose.

That was in the middle of Covid, and we have essentially seen no improvement on that situation. The arguments for increased reliance on private providers and agencies to achieve cost efficiencies simply do not hold water. We must accept that these efficiencies have costs, which are borne by service users and workers. Any attempt to define care as a product is the very antithesis of person-centred care, a stated ambition of the HSE.

Another area undervalued by this Government, and absent from this motion, is safeguarding. There have been long-standing calls for safeguarding legislation, yet successive governments have dragged their heels, even against the backdrop of a number of the abuse scandals. I appreciate the Government is awaiting the Law Reform Commission’s report, which is expected early next year, but there appears to be very little political will to get this legislation over the line, at least this side of an election. How long have we been waiting for the Law Reform Commission? When its report finally comes, how long will it take to give effect to it in legislation? While the HSE has its own safeguarding policy, a paper produced by Safeguarding Ireland in 2022 found that HSE safeguarding and protection teams were operating in what Safeguarding Ireland called a legal vacuum. Of most concern, private nursing homes are not within the remit of the HSE's safeguarding policy. This means HSE social workers do not have the right to enter private nursing homes. That is a shocking situation and a terrible state of affairs. Some 80% of our nursing homes are privately owned, following a particular policy by this Government and the previous one. The safeguarding aspect of ensuring older people are protected from abuse cannot be implemented within those private nursing homes and HSE social workers cannot gain access for that purpose. That is a shocking state of affairs. We know from the Irish Association of Social Workers that social workers have even received letters from nursing homes informing them they will be prosecuted if they try to enter the premises. Why has nothing has been done about that?

This unacceptable lack of oversight also means that safeguarding complaints relating to private nursing homes are not collected, so we have no idea about the extent of complaints related to safeguarding in private nursing homes. This means we do not have robust data on abuse of older and disabled people. What is not measured does not get any attention. That needs to be dealt with. While I accept HIQA can investigate private nursing homes, its inspections mostly focus on facilities, not individual cases. This absence of investigative powers in cases of abuse and neglect cannot be tolerated any longer. A country with such a long and dark history of institutionalisation and abuse should know far better than that.

The Government also needs to be reminded that the option to live independently in the community is a human right. More needs to be done to guarantee that right. In 2011, Time to Move On: A Strategy for Community Inclusion was published. This document proposed a seven-year timeframe for moving all residents of congregated settings into the community. Twelve years on, there are still 2,300 disabled people living in congregated settings and 1,300 people under the age of 65 living in nursing homes. How can someone with a disability have autonomy if their routine is dictated by a nursing home? It is difficult to have independence when you have a set bedtime and set mealtimes. This was highlighted by the Ombudsman two years ago in his report, Wasted Lives. He found there was a bias towards institutionalisation and a lack of funding to support individuals and their rights.

Instead of addressing these pressing issues, the Government is spending €1.5 million on advertising campaigns about disability rights, all the while continuing to deny those very rights. Under this Government, the experience of people with disabilities continues to be one of social exclusion. They have among the highest poverty rates of any group in Ireland, three times that of the general population, and more than two in five people with disabilities are experiencing deprivation at any one time. The reality for many people is threadbare services and unmet needs. The least this Government could do is ratify the optional protocol to the UNCRPD.

For children with disabilities, the situation is just as bleak. More than 16,500 children are currently waiting for their first appointment with a children’s disability network team. Of these, approximately 10,000 children with disabilities have been waiting for more than a year with no intervention or therapy. I have no idea how the Government can defend that situation. We have 10,000 children with a disability who have been waiting more than a year with no intervention whatsoever. Rather than enjoy basic rights, these children are being actively harmed due to the persistent neglect by this State. Until we start addressing these systemic failures in our social care services, rights-based care will remain purely notional and far removed from the experience of those receiving care.

Earlier today, we heard the testimony of three family carers at an event organised by Family Carers Ireland. It would bring tears to your eyes. That we deny our citizens with disabilities the most basic fundamental human rights brings shame on the State. The Government needs to take action urgently.

1:55 pm

Photo of Gino KennyGino Kenny (Dublin Mid West, People Before Profit Alliance)
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I commend the authors of the report, in particular, the Irish Women's Parliamentary Caucus. This is a comprehensive motion and a tapestry for a framework on the nature of rights-based care and the evolution of care. At one stage in our history, people in care were institutionalised. That model obviously does not work and the community-based system in place now is better than the system we had in the past. Things have moved on but during one notch in time, the pandemic, we saw the divide in our health system between private and public healthcare. It did not really make a difference because public healthcare was at the cutting edge in trying to provide people with a way out of the pandemic.

Carers play an enormous role in the fabric of life, whether paid or not. I was a carer before I entered the Dáil and when my time in here finishes, I will probably go back to care work. It is extremely rewarding. The people I met in that job and vocation taught me a huge amount, not only about themselves but also about myself and society. There are carers in all walks of life, some of whom are paid while others are not paid. It is important to acknowledge that. In the capitalist system carers can go unnoticed and unrewarded. They are not looking for financial rewards, just the basics of caring, which can be arbitrary.

In particular, there is a huge lacuna around respite provision for people who need it. Carers need respite as well. There is a major divide in regard to those who can avail of respite care and those who cannot. I think the Minister of State will acknowledge that.

The motion acknowledges the role of private sector workers in care work. Twenty-five years ago, 80% of nursing home provision was run by the State. It is the opposite now, with 80% of care provided by the private sector. There are major downsides to this, particularly in respect of the pay and conditions of carers. There is a serious issue with recruiting carers and a serious shortage of staff. The reason for this is generally down to pay and conditions. That must be acknowledged.

The motion does not refer to the care and repair scheme, which is a brilliant service. The Government should be a bit more vocal in letting people know that they may be able to avail of it. I have seen how well the scheme works in practice but it goes under the radar when it comes to care provision. It is a very holistic and community-based type of care. There is not just the care aspect; there is also the repair. The scheme focuses on the kinds of community and human bonds that are extremely important in respect of care. Care evolves into many categories, as I have said. Focusing on human relationships is a very important part of care work.

There are huge deficits in the provision of care and in terms of who can avail of it. At one point or another in our lives, we all may need care or may provide care. There is a rich tapestry when it comes to how care works. There are a lot of deficits and divides between those who can avail of care and those who cannot. If there is one thing we can do as a caring society, it is to move towards a rights-based model that is focused on the UNCRPD, which is extremely important. People need rights and they need a say in how they are cared for. That is very important as we go forward.

2:05 pm

Photo of Violet-Anne WynneViolet-Anne Wynne (Clare, Independent)
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I fully support this important and timely motion from the Women's Parliamentary Caucus, of which I am an eager member. I thank the chairperson and vice chairperson of the caucus and, in particular, the secretariat staff, especially Eva Nolan, for all their work and support on this issue.

I attended this morning's launch of the Family Carers Ireland scorecard for this year. That document shows very clearly what progress, if any, has been made on the 18 relevant commitments in the programme for Government. It was disappointing to see there has been regression this year on four of those commitments, which means the situation is actually worse now than previously. The scorecard showed there are six commitments on which nothing has been achieved, five that have seen limited progress and only three where there has been good progress. The Family Carers Ireland representatives mentioned they were happy that the Minister for Social Protection is the first Minister in 14 years to raise the income disregard for carer's allowance. That is much appreciated. I know the Minister of State, Deputy Butler, is extremely busy but it would have been great if she or another Minister could have been present to hear the lived experience of the women who spoke. As Deputy Shortall said, their words deeply affected all of us. I must mention the gorgeous Willow, one of the daughters of the mothers who were there, who was fantastic. It was great to get an insight into their daily lives and experiences.

The carers mentioned a few issues that I raise now with the Minister of State. One was respite, which was described as the Holy Grail for carers. For some, respite is completely non-existent. It is heartbreaking to hear that. For one particular family, as I am sure is the case for many others, such provision has been non-existent for 20 years. For another family, there are three weekends of respite a year, although there are sometimes difficulties with staff shortages. The carers also wanted me to mention the delay in implementing the national carer's strategy and to ask that it be addressed as soon as possible. There has been a delay for the past six years. I wanted to mention a few other points but I am out of time. I will just refer to the carer tax credit, for which €5 million was committed but only €1.1 million has been delivered so far.

Photo of James BrowneJames Browne (Wexford, Fianna Fail)
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I thank the members of the Women's Parliamentary Caucus for their proposals to deliver a rights-based care economy in Ireland. It is a very timely motion and I commend them on it. My colleague, the Minister of State, Deputy Butler, very ably detailed the Government's response to the care needs of older people and the supports for carers provided throughout the social protection system. I will focus primarily on the Government's commitments to respond to the needs of people with disabilities and their carers, as well as the issues of gender equality and supports for foster carers.

Since the United Nations Convention on the Rights of Persons with Disabilities was ratified by Ireland in 2018, we have taken great strides in the development of services and supports for people with disabilities, their families and carers to ensure those services and supports are aligned with the principles set out in the UNCRPD. A critical milestone in this regard was the commencement of the Assisted Decision-Making (Capacity) Act 2015 and the amendment Act of 2022, which, on 26 April 2023, brought wardship to an end in the State. The legislation also provided for a number of key measures for further compliance with the UNCRPD. These measures were previously set out in the Disability (Miscellaneous Provisions) Bill, which lapsed with the last Dáil. The Government is determined to fulfil the programme for Government commitment to develop an implementation plan to co-ordinate implementation of the UNCRPD. To deliver on that, the development of a successor strategy to the national disability inclusion strategy is under way, with targeted stakeholder consultation focused on disabled persons' organisations.

The Disability Action Plan 2024-26, approved by the Government in July 2023, will support the implementation of the disability capacity review, in accordance with the programme for Government. Crucially, the action plan sets out targets for addressing demographic pressures, making significant progress on unmet needs, working to replace remaining congregated and institutional residential care settings with community-based models, and continuing the really important reform towards individualised, person-centred models of service while growing service capacity appropriately. Budget 2024 will see further increases to funding for specialist disability services, with a total of €2.8 billion committed for next year across a range of service areas, including residential, respite, children's services, adult day services, personal assistance and home support.

The HSE's Progressing Disability Services for Children and Young People, PDS, programme is enhancing the model of service delivery to ensure equitable access to standardised services across the country. The PDS roadmap for service improvement for 2023 to 2026 was launched by the HSE in October this year. In budget 2024, the Government allocated approximately €8.5 million in additional funding to children's disability services, focusing on funding for therapy assistant posts, educational places and targeted services. In budget 2023, approximately €11 million was allocated to address waiting lists for clinical assessments for people with disabilities. An additional €5 million will be provided for this purpose in 2024. A working group on workforce enhancement - disabilities has been established to examine, identify and provide solutions to matters that are constraining the supply of health and social care professionals to provide disability services.

Under the national service plan for 2023, the HSE will deliver an additional 70,370 personal assistant hours to expand and enhance the supports for people to live self-directed lives in their communities. Budget 2024 provides an additional €2 million for personal assistance services. In addition, approximately 3.12 million hours of home support services for people with disabilities are expected to be provided in 2023. At the end of September this year, there were 8,355 residential places for people with disabilities.

In 2023, funding was made available for 43 priority placements and as of September, 103 places had been delivered.

The forthcoming disability action plan is proposing the provision of additional residential care places to tackle unmet needs and ensure supply keeps pace with demographic changes. Increased investment has impacted positively on the provision of respite services for people with disabilities in successive years. Up to the end of September, 76,994 overnight sessions and 21,947 day-only sessions had been accessed by people with disabilities. The forthcoming disability action plan commits to increasing this level of respite provision by approximately one third. The HSE is examining the consolidation and appropriate expansion of existing centre-based respite, as well as alternatives to centre-based respite, to ensure the greatest number of beneficiaries can be supported, with approximately €10 million provided in 2024 for this purpose.

HSE-funded day programmes for people with disabilities support over 20,000 people and include a range of centre-based and community-based activities. They support people with disabilities on weekdays and include adult day services and training programmes, principally rehabilitative training. Substantial progress has been made over the past decade in supporting people to participate in mainstream activities and in the life of their communities under the New Directions policy. Since 2015, a process to attend to the needs of young people leaving school and rehabilitative training programmes has been implemented. It is now known as the school-leaver process. The Government has provided €18.2 million in new development funding for school leavers in 2024.

The HSE resourcing strategy sets out specific actions targeted at attracting and retaining our health workforce. Given the significant workforce challenges faced across disability services, the Department of Children, Equality, Disability, Integration and Youth is strongly of the view that a dedicated HSE disability-specific workforce strategy is required. To support the supply and retention of staff within disability services, a senior interdepartmental workforce steering group has been set up, which includes HSE personnel, to address immediate and longer-term staffing needs.

We recognise the challenges faced by section 39 organisations, so I was pleased to see that under the auspices of the Workplace Relations Commission, an agreement on funding for pay was recently accepted by members of trade unions representing section 39, section 56 and section 10 workers. The agreement amounts to an 8% increase in funding for pay and will benefit a great number of staff providing vital services on behalf of the Government. It will also help address staff recruitment and retention challenges in these voluntary organisations. It affords a measure of protection to the continuity of services and fairly recognises the contribution and commitment of workers in providing essential services to some of the most vulnerable people in society.

The Department of Children, Equality, Disability, Integration and Youth is supporting the HSE on an ongoing basis to improve the availability and quality of data on disability services. This is being achieved through initiatives such as the HSE's disability support application management tool, which provides a detailed profile of people with disabilities who require funded supports outside the current service quantum. An integrated community case management system is also being developed to support people’s journey through disability services.

Foster carers provide care to some of the most vulnerable people in society by providing a stable home environment for children who cannot live with their family of origin. I recognise the great and vital work of foster carers. Tusla has published the Strategic Plan for Residential Care Services for Children and Young People 2022-2025 and has appointed a Tusla national lead for foster care. The Government has substantially increased the foster care allowance in budget 2024 and is also providing a double week of foster care allowance and double child benefit in respect of each qualifying foster child before the end of the year. The issue of improved State pension eligibility in respect of foster carers has been raised with the Minister for Social Protection. Engagement between Department officials on this matter is ongoing.

Recognising that responsibility for caring rests disproportionately with women, the Government has announced its intention to hold a referendum on gender equality, as recommended by the citizens’ assembly and the special Joint Committee on Gender Equality. On Tuesday last, the Government approved proposals for two referendums, which will amend Article 41 of the Constitution to provide for a wider concept of family, delete Article 41.2 of the Constitution to remove text on the role of women in the home and insert a new Article 42B to recognise family care. The referendums will be held on 8 March 2024.

The programme for Government includes a commitment to develop a successor to the national strategy for women and girls. Consultations on the development of a new strategy will begin in 2024 and the successor strategy will include actions to address gender equality across government. In addition, the suite of statutory family leaves, which are aimed at assisting employees in managing their caring responsibilities with work, have undergone significant developments in recent years. Most recently, the Work Life Balance and Miscellaneous Provisions Act 2023 has introduced five days' leave for medical care purposes, which is a flexible short-term leave to complement longer term leave, and a right to request flexible working for parents and carers. More broadly, the ongoing enhancement of social protection supports for family carers and the expansion of care in the community under Sláintecare will mitigate the gender inequality that arises from the fact that the majority of unpaid carers are women.

I thank the Women's Parliamentary Caucus for the opportunity to discuss the progress being made on all these important fronts to deliver the rights-based care economy to which we are all committed.

2:15 pm

Photo of Ivana BacikIvana Bacik (Dublin Bay South, Labour)
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I am honoured, as deputy chairperson of the Women's Parliamentary Caucus, to close the debate today, having proposed this important motion on a rights-based care economy. I thank all those colleagues from across the House who spoke on this important motion and the Ministers of State, Deputies Butler and Browne, for providing us with a Government response.

Undoubtedly, there is a great deal being done but, unfortunately, there are still many gaps in the system. While I acknowledge the progress being made, having listened to my colleagues who have spoken, it is fair to say that we are falling far short, particularly for children with special needs and the thousands of children who are still awaiting a first assessment. Across our constituencies, we hear all the time from the parents of children who cannot get a special needs place or supports to enable their kids to fulfil their potential in our education system. Earlier today, at a Family Carers Ireland event, listened to the poignant testimony of a parent who cares for a child with special needs. It was profoundly moving to hear the hoops she has had to jump through and the obstacles put in her way to ensure that care would be provided. We are still falling far short of the care that her child, like so many other children, needs. We are falling short in the provision of care for children and older persons.

I note the Minister of State spoke about progress in reducing the numbers waiting for home care supports. Even according to the Government's own figures, over 3,000 new applicants who were approved for funding are still awaiting home supports. That is in addition to the 2,900 people who are receiving supports but not yet the maximum hours advised. The Minister of State will agree that it is simply not good enough that in 2023, we have so many older people, younger people and children who are not being provided adequate levels of care.

The gendered nature of care was at the forefront of the minds of members of the Citizens' Assembly on Gender Equality and members of the Oireachtas Committee on Gender Equality. It is not a coincidence that of the 45 recommendations on gender equality made by the committee, 16 related specifically to care and social protection. We also made a recommendation on constitutional change in respect of care, which I will speak about in a moment. The reason 16 of the recommendations related to care and social protection is that the committee report, in the chapter on care and social protection, point out that while Ireland has seen a cultural shift in attitudes to care, women remain disproportionately responsible for unpaid care. Even in the workplace, women are over-represented in poorly paid care work sectors. For working parents, this can present significant challenges and women are most disadvantaged by those challenges. Lone parents face particular obstacles. Of course, in recognising that gender balance, the needs and rights of those receiving care must also be respected and supported in our laws and policies. That consideration was paramount for us in the Women's Parliamentary Caucus in bringing forward this motion.

The motion calls for a rights-based care economy. Some of the key demands we make in it include the immediate establishment of the commission on care and for its remit to be extended to include all types of care, including disability care and the delivery of rights-based care in line with the UNCRPD. The Minister of State confirmed that the commission on care for older persons would finally get under way in January of next year. We are very glad to see progress at last. I understand the Minister of State also said the chairperson was in the process of being appointed. Again, that is welcome.

However, we need to ensure that the commission addresses the intersectional issues, not just relating to older age but also relating to disability, to older persons who may have a disability or who may become disabled later in life. We also need to look at other issues relating to class and geographic area because we know that care is not consistently provided across the country. We want to see the sort of rights-based care that is fit for the 21st century provided to older persons and persons with disabilities - the sort envisaged by the Assisted Decision-Making (Capacity) Act, originally pioneered by a Labour Party Minister of State, Kathleen Lynch, who charted a way forward for a rights-based model of care.

I have spoken about the need to ensure support for those who work in home care and I note the Minister of State's comments on that. We are concerned that some carers are still not getting the living wage. I know Government is moving on that. The Minister of State, Deputy Browne, also came back on the issue of section 39, section 56 and section 10 workers but we are still not hearing about parity of pay and conditions being provided for those workers, which they deserve because they provide such vital support across society.

We are concerned about the fair deal, which we touched on. We need to ensure the fair deal is not just skewed towards institutional care. Under the fair deal scheme, we can develop an equitable system for care in the home and for community-based care settings. As many speakers have said, in addition to real concern about potential for abuse in institutional settings, most of us would simply much prefer to be cared for at home.

I spoke earlier about being outside and meeting a coalition of disabled persons' organisations coming together under the banner of scrapping the Green Paper on disability reform. I do not believe the Minister of State, Deputy Butler, addressed those concerns, but I ask her to take them on board. One of the women outside told me that she did not want to be put into a nursing home. She is receiving care in her home and that is exactly where the focus should be under the fair deal and all Government policies on care. Those with disabilities and those in older age must be supported to remain at home. Obviously, this is not only better for those individuals, but it is also better for our economy because it is much less costly and people have much better health outcomes where they are enabled and supported to stay at home.

The programme for Government included a welcome commitment to deliver a carer's guarantee to enable family carers to deliver a core basket of services. We want to see that implemented; it will be very welcome when we do see it. In 2021, Government acknowledged the cost of disability and that must also be recognised in the commission on care. The report from the gender equality committee called for adequate data to be maintained on care. The submissions of stakeholder groups highlighted the lack of data on care, meaning that the Government is really hampered in trying to develop the long-term planning that is needed. We do not have really robust data on the projected needs for care and the number of those providing care. This is an opaque area.

I listened carefully to what both Ministers of State said on the constitutional change. I think I speak for all members of the committee in saying we are very disappointed the proposed new Article 42B will not recognise care beyond that provided within a family or by people with family bonds. The Minister of State, Deputy Butler, has spoken about the care provided by people and the volunteers in organisations like meals on wheels. We all know those involved in them and the amazing work they do supporting and enabling older people to live at home. However, that sort of care provision will not be covered and will not be valued in the new Article 42B. The care provided by friends who have no family bonds but are providing care out of love nonetheless will not be covered by Article 42B, as I read it. Of course, the value of care provided by those who are paid to do so will not be recognised. We are creating a hierarchy of care. Dr. Laura Cahillane described the wording as a fudged opportunity which is a fair assessment. It is disappointing to hear that.

I know the Minister, Deputy O'Gorman, has said that while that less expensive definition of care is covered in Article 42B, the Government aims to provide support for carers outside of that definition through other means. While we will not have time to hear it today, we need to hear from the Government what levels of support will be given to provide the care that will not be protected or valued in the new Article 42B in the Constitution. What supports will we see? Will we see the sorts of measures that the motion from the Women's Parliamentary Caucus suggests, that the gender equality committee suggested and that the citizens' assembly suggested? Those are the sorts of meaningful supports that would really make a difference to carers and to those who receive and need care. That level of support needs to be guaranteed and committed to for us to be sure that the definition is not so restrictive that it becomes utterly meaningless and we do not see the value of care in our society that is so badly needed.

We need to recognise the gender dimension while also recognising the immense contribution that carers make to everyone in society. All of us have needed care in our childhood and all of us are likely to need care at some point during later life. There are many people who, during the course of their lives, will need care at various points. We are all conscious of the integral role of care in society. That was the impetus behind this motion from the Women's Parliamentary Caucus and it was really a driving force behind the work of the Citizens' Assembly on Gender Equality and our work on the special committee.

I hope we can hear more from the Minister of State and her colleagues in government over the course of the weeks and months ahead as to what level support will be provided for carers and, in particular, how we can ensure that we do not see thousands of children still continuing to wait for assessments and thousands of older people still waiting to receive necessary home care and supports so that they can live independently at home. I again thank everyone for supporting this motion.

Question put and agreed to.