Mary Seery Kearney (Fine Gael) | Oireachtas source

I move:

“That Seanad Éireann: acknowledges that:

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

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

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

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

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

notes that:

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

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

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

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

- increasing the Carer’s Allowance;

- increasing the Domiciliary Care Allowance;

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

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

- increasing the Single Person Child Carer Credit;

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

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

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

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

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

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

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

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

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

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

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

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

calls on the Government to:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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