I thank the committee for inviting us to contribute. ALONE is a national organisation that enables older people to age at home. In 2023, ALONE provided support to more than 36,000 older people. We have staff and volunteers in all 96 community healthcare network areas. We are also part of the work of the national enhanced community care programme. To make the most of the time allotted to us, we will first speak on the home care legislation and then on the healthcare and related needs of older people in their communities from ALONE’s experience.
To provide context, ALONE is a founding member of, and provides a secretariat to, the Home Care Coalition. The coalition is a group of more than 20 charities, not-for-profits and campaigners, including organisations that work with older people, people with disabilities and people with long-term illnesses, organisations that work directly with carers, and groups that work in the primary care sector. ALONE and several of and our colleagues in the sector believe that the recommendations of the Law Reform Commission's report on the legal aspects of professional home care, which was produced in 2011, still hold some validity. Some of these should be considered as part of the review, if they have not already been considered.
For several years, the Home Care Coalition has met quarterly with the home support reform team in the Department of Health. We have provided input to various areas relating to the statutory scheme through meetings and consultation processes. Recently, coalition representatives also met the Department of children for the first time in respect of disability and PA services.
While ALONE welcomes the Bill as the beginning of licensing home support providers, we acknowledge that Ireland is behind in delivering a statutory home support scheme. We have concerns about the regulations that will be underpinned by the Bill. We have been informed by the Department that the regulations are now largely finalised and out for legal drafting. We hope that the committee can also consider the draft regulations as part of the process of pre-legislative scrutiny.
During the consultation process, the Home Care Coalition raised concerns about the regulations. Wording instating a minimum educational requirement was removed from them. We were informed that the reason for this removal was to allow for keeping the door open in order to future-proof the regulations in terms of new qualifications. ALONE's concern is that this offers a loophole for home support providers to not have a minimum educational requirement in place. Minimum education and training for home support workers to provide an acceptable level of service should be a minimum requirement of a regulated sector.
The regulations do not apply to a home support service provided by a person to three or fewer service users. While recognising the difficulties that regulating this would entail, we believe this will enable the continuation of informal care whereby a carer for one or three people can continue to work unlicensed and unregulated. Such carers will therefore remain open to exploitation in terms of pay and conditions and those availing of this care will also be at risk regarding the standard of care they receive. To the best of our knowledge, and as per the regulatory impact analysis published alongside the Bill, there are currently no plans to regulate home care workers working on a private individual basis in this way.
We have other concerns about the home support scheme and development of the statutory scheme. The work of the strategic workforce advisory group has been hindered by the recruitment freeze in the HSE. No progress has been reported on the group's recommendation that there should be a significant increase in the proportion of home support hours and packages provided directly by the HSE. Delivery of an equitable statutory scheme will not be possible while there is overdependence on private sector providers. In addition, the process was flawed, in that there was no benchmarking of the number of workers at the start of the process versus now, so we do not have accurate information on what the situation regarding workers is.
The commissioning process for home support is problematic in terms of offering any level of security for not-for-profit providers and workers. All not-for-profit providers work under precarious conditions because of how the HSE's commissioning works. As soon as a client goes into hospital or residential care, the provider and, by extension, the worker stops getting paid.
Last year's tender pricing model, by virtue of not funding travel expenses and only partially funding travel time, ensured that private providers were increasingly only taking on clients who were close to where workers were based. Otherwise, the services became loss making. This impacts rural, hard-to-reach and high-traffic urban areas. HSE workers, by virtue of the tender, get first right of refusal of a client, but given they only comprise 40% of the market, those they refuse tend to be the harder-to-reach clients or need support outside normal working hours. The HSE does not provide for weekends or overnights.
The home support service has moved away from traditional "care", such as basic cleaning, changing of bedsheets, etc. This service is vital for older people who are physically frail. We have seen a significant increase in older people looking for support with these basic tasks where they cannot afford private cleaners. This significantly impacts on people’s quality of life, as their housing conditions and welfare decline.
Despite multiple reports by the Department of Health, there has been no progress in identifying a suitable funding mechanism for home support. We are concerned by reports of a fair deal scheme for home support, given the extensive bureaucratic process of the actual fair deal scheme.
Currently, our home support services operate based mainly on trust. There are no regulations, no standards, no independent oversight and very little data, so any progress must be welcomed.
According to the Social Care Institute for Excellence, home care services are often experienced as impersonal, inflexible, underfunded and poorly integrated. They are not designed around the older person, but dependent on organisational structures and who is providing the service.
As we welcome this Bill, we take the opportunity to urge the committee, the Department and the Government to consider health and social care supports for older people more broadly and to support the design of services, with the needs and rights of the older person at the centre of the process. As for the healthcare needs of older people, it has always been our mission to support people to age at home and the health issues I address today are what we see that older people need to age healthy and well at home. The advantages of healthcare being shifted into the community are twofold. First, it will reduce admissions to acute hospitals where it is safe and appropriate to do so and, second, by enabling a “home first” approach, people get to be treated and recover in their own environment.
A core focus of ALONE’s model is linking community and acute services to enable all groups to work together to meet demand. It is strategically designed to bridge the gap between various agencies and services, establishing ALONE as a critical link in the continuum of care. Our evidence comes from a report we produce each quarter that examines what older people need and what their emerging needs are. It is a detailed report and provides a view of what ageing at home in Ireland is like. We have submitted the latest edition from the first quarter of this year and links to the previous reports.
I will move on to the primary healthcare services. Older people experience considerable issues in accessing primary care, including with regard to public health nurses, occupational therapists, GPs and physiotherapists. Of the one in three people reporting to ALONE for GP or primary care issues in 2023, the majority required support engaging with a public healthcare nurse and the second most prevalent issue was support in accessing occupational therapy. While we support older people to engage with PHNs, where available, and access to occupational therapy, both pose a significant challenge. They are pinch points in the system of community care and, for different reasons, are very important. We ask for a review of the staffing levels of these strategic roles and to prioritise recruitment, where and when needed.
Regarding loneliness and mental health, general health issues are the top reasons people look for support from us and, of these, loneliness is the main category. Last year, two thirds of older people who accessed our services experienced loneliness or social isolation some or all the time. The European Commission’s research suggests Ireland is the loneliest place in Europe. ALONE has over 7,000 engaged volunteers who give their time to support and befriending isolated people in their communities yet commitments to develop an action plan to combat loneliness have not been realised.
ALONE is a co-founder of the loneliness task force, a cross-generational coalition working to end loneliness in Ireland. Earlier this year, we launched the loneliness task force research network to provide primary evidence of the issues as they present in Ireland. We call for funding and resources within the Department of Health to deliver the plan to combat loneliness as outlined by the loneliness task force. In May, we welcomed the Seanad motion calling on the Government to live up to this commitment.
Mental health difficulties remain a significant issue among older people. In total, 2,405 people assessed by ALONE in 2023 indicated they had issues with their mental health. The most prevalent mental health issue was dementia or Alzheimer’s, followed by depression and anxiety. Research published this week by Aware and supported by ALONE has found that 34% of older people experience mild to moderate depression, 41% experience mild to moderate anxiety and 14% considered ending their lives in the last 12 months.
Last year, we addressed the Oireachtas Joint Sub-Committee on Mental Health on the significant mental health difficulties being experienced by older people and we would request an update from the committee on this report. In addition, we have been engaging with the national implementation and monitoring committee, NIMC, in relation to the implementation of Sharing the Vision actions relating to older people. We have been told the decision to establish a specialist group relating to older people’s mental health remains under review pending an update of progress later this year. We call for this specialist group to be established under Sharing the Vision as a priority. Given the levels of mental health issues, some of them unique to older people, we hope to see a similar focus to what we have seen with child mental health. It should not be an either-or but a recognition that all areas of equal importance.
The link between health and housing cannot be overstated. We note that the Institute for Healthcare Improvement states that the different inputs that make a good healthcare system are 40% socioeconomic, 10% physical environment, 30% health behaviours and 20% healthcare. It is a holistic view. I have included the links on health and housing and given this committee’s brief, we want to highlight two specific areas.
The first is housing adaptation grants. At least 50% of all housing adaptation grants that ALONE works with older people to secure are for bathrooms. This is to increase access and ease of use for basic hygiene needs. The recent increases in funding only bring the grants available to 2010 levels. Engagement with the Department of housing revealed that increasing funding for the grants being negotiated with the Department of public expenditure is challenging, in part because the value for money and cost savings provided by the grants are of benefit to the Department of Health in terms of falls, prevention and delay in accessing hospital or nursing home care, rather than to the Department of housing. Any health or social care worker will speak to the need for funding for these grants yet there does not appear to be significant co-operation between the two Departments to advocate in this area. Put simply, these grants prevent falls. In our report, falls were identified as the primary physical health concern among older individuals, reflecting the critical intersection between housing adaptations and mobility challenges. Making homes safer is crucial for preventing falls and maintaining older adults’ well-being.
The second issue is housing with support. The lack of inter-departmental work is also holding back progress on the delivery of housing with support. Committee members may be aware that the first housing with support demonstrator project will be up and running in Inchicore before the end of 2024 because of considerable collaboration between ALONE, Circle VHA, the Departments of housing and health, the HSE, Dublin City Council and others, and is part of Government strategy. It is an example of how housing options between home and nursing home can be provided and offer older people independence and dignity. However, it is not replicable in its current state as the funding mechanisms are not replicable and several elements of the funding are once-off arrangements between the two Departments. Suitable funding structures to enable further developments have not yet been established.
Given the estimated increased demand for nursing home care in the coming years, the findings of the Housing Agency relating to the financial benefits of investing in supported housing for older people and the stated aim to provide care in the community, we call for cross-departmental structures to deliver this, such as were committed to in 2019.