Fiona O'Loughlin (Fianna Fail) | Oireachtas source

I move:

That Seanad Éireann, in accordance with the recommendation of the Women’s Parliamentary Caucus:

acknowledges that: - the UN Convention for 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 ‘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; in contrast to paid work, participation and the time people spend in informal care activities is rarely measured;

- as highlighted in the Joint Committee on Disability Matters recent report ‘Aligning Disability Funding with the UNCRPD Budget 2024 Pre-Budget Submission’, there are concerns regarding a lack of co-ordination, organisation, and oversight, as well as policy implementation with regard voluntary services who are delivering disability services in the community in Ireland; 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 needs 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 ‘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;

- UK research ‘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 benefits 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;

- 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 Joint Committee on Gender Equality, ‘Unfinished Democracy: Achieving Gender Equality.’ further acknowledges: - delivery of the ‘Carers’ Guarantee’ proposal 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%;

- the National Carers’ Strategy 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;

- the UNCRPD Implementation Plan, which will outline how the Convention will be implemented, along with right-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;

- individuals’ 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 CHO; 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 €20m 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 2020 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 HSE 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;

- the Government has committed to holding a Referendum in 2023 to implement the recommendations of the Citizens’ Assembly and the Joint Committee on Gender Equality, in order to insert a specific provision into Article 41 of the Constitution 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 2020 and to consider additional measures where appropriate, including: - the establishment of the Commission on Care immediately and the extension of its remit to include all types of care, including disability and delivery of rights-based care in line with the UNCRPD;

- ensuring 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;

- providing access to the State Contributory Pension to those in receipt of the Carer’s Allowance, to include a pension solution for foster carers;

- ensuring implementation of the Programme for Government 2020 commitment to the delivery of a ‘Carer’s Guarantee’ proposal 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, including: - ensuring 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 Act;

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

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

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

- ensuring 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;

- ensuring the accessibility and availability of in-home and community-based services for families with a member with 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;

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

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

- within the statutory home support scheme, the introduction of 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; - the immediate alleviation of waiting list for respite provision;

- increasing the maximum grant limits, income thresholds and disregards under the Housing Adaptation Scheme and removing the need for assessment of the income of other adults living in the household not in full-time education; further 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 to increase thresholds from 18.5 to 22.5 hours per week if an individual receives Carer’s Allowance, Carer’s Benefit or the Carer Support Grant; this review must be completed before the cessation of this Seanad 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 Carer’s Allowance;

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

(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 the Back to School and fuel allowance; in the interim, to introduce a living wage/basic income for carers by increasing the 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, individuals who need 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;

- ensure that the promised Referendum to amend Article 41 of the Constitution to provide for the value of care in society is held in 2023.”

I will share time with Senator Clifford-Lee. I am very pleased to propose this motion in the Seanad. It arises from discussions among members of the Irish Women's Parliamentary Caucus. Within the caucus, which includes members of all parties and none, we were very keen to have a discussion on the care economy and to see how the caucus could contribute to that. The care economy is a broad topic and we need to have many national conversations about it.

I thank Zoe Hughes, policy adviser with Care Alliance Ireland, who spoke to the caucus about different areas we could look at. The term "care economy" refers to all paid and unpaid labour provided in support of caregiving. Ireland's social care system has a complex mix of public and private delivery and financing. We could spend from now until next month without a break speaking about all the different aspects of care and the care economy. As a caucus, we decided to focus on the review and renewal of the current national carers strategy, which has been in existence since 2012. We decided to do so against the background of the Covid-19 pandemic, which brought significant care deficits into focus. The lockdowns highlighted in particular the ongoing gendered nature of care. It exposed gaps in care provision and revealed an increasing reliance on a migrant care workforce and privatised care services.

The caucus sought submissions from care organisations and those with lived experience because there is nothing like sitting down to talk and listen, particularly to a family caregiver who cares passionately and compassionately for a loved one. We acknowledge the many challenges that are there. We set aside one day to meet a number of different groups, including Family Carers Ireland which published a report, Caring Through Covid: Life in Lockdown, which documented an online survey of 1,300 family carers. Many of the carers outlined their worries about becoming ill during that time and being unable to continue caring, as well as their fears that normal services would not resume after Covid-19. I know we can look back on it now, but while we were in the eye of the storm, there was a huge fear among parents about schools reopening. We can imagine the real fear that care services would not resume and that those with special needs would regress during that time.

Following a request for submissions, we received 38 submissions. We brought together ten different organisations, namely, Shine, Family Carers Ireland, Care Alliance Ireland, Westcare Homecare, Acquired Brain Injury Ireland, Diabetes Ireland, Inclusion Ireland, Sage Advocacy, the Irish Hospice Foundation, special schools and classes and, as I mentioned, individuals who came in to give us information about their lived experiences. I was particularly struck by those who were foster parents, particularly for those who have special needs. I thought they had a very special story to tell. I thank Karina Doorley and Brendan Walsh from the Economic and Social Research Institute, ESRI, who helped us with statistics from the Central Statistics Office, CSO, etc.

Following that, we spent some time drafting a motion that went to all our political parties for feedback. It is important to again emphasise that this motion comes from the women's caucus. It comes from all the women who are elected to the Dáil and Seanad. The existing national carers strategy, which was published in 2012, set out 42 actions to be undertaken by the Government to improve the lives of family carers. Those actions covered the needs of family carers and those for whom they care, including the need for access to home care and respite, adequate financial supports, transport, information, advocacy, housing, training, employment and the right to a life of their own away from their caring role. That came out really strongly. Every year, following the publication of that strategy, the Department of Health has produced an annual progress report since 2012. However, this ceased after 2018 and it was acknowledged that this needed to be revisited. I understand from the Minister of State, Deputy Butler, that work is ongoing on the review.

We felt that as a caucus it was timely for us to contribute to this policy.One of the areas that was very much reflected in the stakeholder engagement was the very high prevalence of loneliness and social exclusion among carers. The ESRI, when it looked at its statistics, was able to give examples of associations with poor health for carers. These are major challenges for society. Preventing and alleviating loneliness and social exclusion requires a very multipronged and multilevel approach that includes government, individuals, community organisations and society.

The motion is quite long. I thank those working for the Oireachtas who helped draft it. The key areas are about how, under the UNCRPD, we require a significant social transformation away from a medical approach to disability to one where economic development, health, and care economies can sustain the human rights approach. I also acknowledge that the report, 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. There are a number of key areas. A lot is available already. I note that the Government has committed to developing a new centre-based respite facility in every community healthcare organisation, CHO, but we have not had progress on that. Only this morning, I had a meeting with the Minister for Finance, Deputy Michael McGrath, Deirdre Murphy, the CEO of Kare, and Siobhán Bryan, the CEO of the Muiríosa Foundation regarding where we are in respect of respite care. We are very sadly lacking. It is not down to a lack of money. It is down to being able to put the capital spend in place and making sure that we have the staff to deliver it.

I acknowledge that the Government committed to holding a referendum in 2023, which has now been extended to early 2024, to implement the recommendations of the citizens' assembly and the Oireachtas Joint Committee on Gender Equality. I understand, from a conversation with Clare Duffy from Family Carers Ireland today, that part of the issue seems to be around how we define care. Defining care is about those who need extra care. Care is a very wide area but those who are vulnerable and need extra care are the ones that need to be included.

I acknowledge some of the work that has been done. A HSE pilot of a family carers needs assessment in Community Healthcare West is currently under way, which is one of the areas we spoke about. A commission on care has been committed to and will roll out soon. The Minister of State at the Department of Health, Deputy Butler, established the cross-departmental strategic workforce advisory group in terms of the commission on care. Its recommendations will be important.

I am conscious that my time is running out. I will hand over to Senator Clifford-Lee.