Keith Swanick (Fianna Fail)
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I welcome the Minister of State, Deputy Finian McGrath, to the House. The home help scheme is under pressure. As the Minister of State will be aware, two weeks ago the Irish Independentreported a harrowing story regarding a 70 year old woman who spent 105 hours on a trolley in Limerick hospital and her family's expressed fears that she would die if a fire started. This is the direct result of a lack of investment in home help hours and step-down nursing support facilities. The HSE figures reveal that 79 patients have been stuck in public beds for six months due to a lack of step-down facilities and home help hours; by mid-September 745 patients had not been discharged despite being medically fit, which is staggering, and that over 1,000 people were added to the home help waiting list in the last four months, with the waiting list now at 7,300.

As recently as the last two weeks, local Councillor Joe Flaherty and I met representatives of a newly-formed carers group in County Longford who passionately articulated the frustration of carers, their families and the wider community. The system is broken and the patients and their loved ones are paying the price. The group provided me with details of several cases where additional hours have been approved but the families have been told the additional hours cannot be commenced before Christmas owing to an embargo. The hours have been approved but they are not being provided which, in the main, is the issue.

There are two distinct groups of carers in crisis. There are patients who have access to family carers and patients who do not have families to care for them. The latter cohort is the worst affected as in many cases they receive no care. We routinely hear, as I do in my practice, of patients left soiled or lying on a floor, perhaps unconscious or with a broken limb after a fall, until such time as a neighbour or a good samaritan calls to the House. In regard to family carers, the real risk for them is the absence of an effective home care structure and, subsequently, family burn-out which, in turn, leads to further illness in the home and additional expense on the system rather than a saving.These families are tired, frustrated, upset and disillusioned with a system that has failed them. The most troublesome and worrying trend about which the new carers' advocacy group told me was that they had been warned not to complain or their existing hours would be cut. It has reached the stage where many carers are afraid to speak out. If that is true, it is a fundamental injustice and extremely worrying. I seek clarification on the matter from the Minister of State.

There is a clear and obvious need for an advocacy group for family carers, independent of the HSE. It should be positioned to articulate and champion their concerns. As I mentioned, I met the group in Longford two weeks ago. I met a woman by the name of Majella Meade who has been battling illness since 2014. She tried to balance her recovery with her work in caring for her patients. However, the toll was too much and she had to give up the job she loved. Sadly, her father passed away in May this year but not before living an additional 18 months with his family. The priceless extra time was thanks to the care and love of his family. The health of Majella's mother, Mary Jane Meade, deteriorated after her husband's death. She has vascular dementia and requires full-time care and supervision in the home. The family has a carer who calls for one hour each day, five days a week. If Majella wants to go to the shop or see the doctor because she has her own health needs, she has to rely on a neighbour to help. The community nurse in Longford has provided great support for the family.

The family have been assessed and it was proposed that they receive three calls per day and two over the weekend, but that has not happened. If it had, it would have meant a major improvement. However, the family heard that there was an embargo on extra hours and, therefore, a delay because of budget overruns and overspending on the national children's hospital. We need to ensure that once hours are allocated, they are honoured and that people receive the care they need. There is a shortfall in the number of carers, but we need to ensure the qualifications of carers are up to speed. The most important point on which I need clarification concerns families being threatened with the loss of hours if they do not put up and shut up. If that is true, it is a disgrace. We need clarification on that matter and perhaps an investigation.

Finian McGrath (Dublin Bay North, Independent)
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I thank the Senator for raising this important issue. I will respond to some of the issues raised and also follow up on them. I share the Senator's views on the valuable work carers do in our society. Home supports enable older people to remain in their own homes and communities, as well as facilitating timely discharge from hospital. The Government has made investment in home support services a priority. Progress in this area is reflected in the additional funding made available in recent years, with the budget growing from €306 million in 2015 to nearly €446 million in 2019. More than 50,000 people benefit from this service at any one time. As outlined in its national service plan for 2019, the HSE maximises the utilisation of current resources. It prioritises those who require discharge from acute hospitals. Significant resources and services in 2019 have been targeted to facilitate timely egress.

In winter 2018-19 the focus was on reducing the number of delayed patient discharges through mobilising the additional resources made available and ensuring social care measures were deployed effectively to enable older people to move to a more appropriate care setting, including step-down or transitional care in their own home, with the requisite supports.

When talking about home support, we must also recognise the support provided for people with a disability. That area is part of my portfolio. The HSE is fully committed to maximising the provision of health and personal social care services for people with disabilities, including home support services, within available resources, empowering them to live independent lives. In its national service plan for 2020 the HSE expects to deliver 3.08 million home support hours to more than 8,000 people with a disability.That is an increase of 150,000 hours on last year's target. Therefore, it is a significant investment. I also acknowledge that in some cases access to home support services may take longer than we would like. However, the HSE has assured the Department that people on the waiting list are reviewed as funding becomes available to ensure individual cases continue to be dealt with on a priority basis within the available resources and as determined by the local line staff who know and understand the client's needs and undertake regular reviews of those care needs to ensure the services being provided remain appropriate.

The HSE welcomes and encourages feedback from its clients on home support delivery. I emphasise that it is not HSE policy that a client's existing level of service be reduced on receiving a complaint. If a client's needs change, the client or the carer can request a review by contacting the local health office. In line with the commitments given in the programme for Government, we have made improved access to home support services a priority in budget 2020. An additional investment of €52 million is being made in 2020 which will support the provision of over 19.2 million hours of home support. That is 1 million hours more than the 2019 target and represents a substantial increase in service provision.

While the existing home support service is delivering crucial support to many people across the country, it needs to be improved to better meet the changing needs of citizens. The Department of Health is developing plans for a new statutory scheme and system of regulation of home support services for older people and adults with a disability. Included in the investment is dedicated funding for the testing of the new statutory home support scheme in 2020.

Keith Swanick (Fianna Fail)
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I appreciate what the Minister of State said about the figure of €446 million and the 50,000 people who are benefiting from it. However, the population is getting older and people have more complex health issues that require more care. Will the Minister of State give a commitment that vulnerable persons for whom home care is sanctioned will be allocated hours and receive them within a dedicated timeframe, be it three or six months? Can we put something down in that regard?

I know that it is not HSE policy to penalise carers' families when they complain, but the reality is that they are afraid to complain because they have been threatened with this. It is not HSE policy, but it is the reality. I implore the Minister of State to examine the matter in further detail. I can give him more details after this debate, if he wishes. The issue is that it is a bullying tactic being used by some who work in the HSE. I would hate the most vulnerable persons in our society to be disenfranchised if that is the case.

Finian McGrath (Dublin Bay North, Independent)
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I accept the Senator's point about carers. Home supports enable older people and people with disabilities to live as independently as possible, as well as facilitating timely discharge from hospital. The Government has made improved access to home support services a priority in the budget. In 2020 an additional investment of €52 million is being made which will provide over 19.2 million hours of home support. That is a crucial investment.

To respond on the two issues raised by the Senator, having a dedicated timeframe is a sensible proposal which I will convey to the HSE and the Department of Health. If we are putting in €52 million and providing 19.2 million hours, we must see results and a timeframe for families and carers. That is something I will include in the follow-up on this matter. While the home support service is delivering crucial support for many throughout the country, we accept that it has to be improved to meet the changing needs of citizens, including the complex needs mentioned by the Senator. Because this is a debate I have in the disability sector, I like the way the Senator spoke about the two categories - family carers and those who do not have any family member at all. I have the same problem with adults with intellectual disabilities. I have to bring those who receive no home support to the top of the queue when it comes to fighting for funding.While the administration of the scheme will be centralised, the delivery of services will be co-ordinated at a local level in line with the person's assessment of need. A core component of the scheme and testing phase will be the implementation of interRAI as a standardised system tool for determining need under the new scheme.

With regard to the Senator's remarks about bullying, bullying is unacceptable in any service, whether a service for those with a disability or a service for senior citizens. We cannot tolerate it. When people have legitimate complaints, they have to feel free and relaxed about making such a complaint. This is particularly true for people who are looking for services relating to care, disabilities, or senior citizens. Those are very important things. That is a second issue on which I will return to the HSE in order to see what is going on on the ground in some places.