Ivana Bacik (Dublin Bay South, Labour) | Oireachtas source

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.

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