This investigation by the Ombudsman looks at the appropriateness of the placement of people under 65 in nursing homes for older people. It looks at their experience living in nursing homes and some of the reasons behind their admission.
The executive summary with key findings and recommendations is presented below, and the full report can also be downloaded from this website.
This investigation by the Ombudsman looks at the appropriateness of the placement of people under 65 in nursing homes for older people. It looks at their experience living in nursing homes and some of the reasons behind their admission. The Ombudsman received a small number of complaints from, or on behalf of, people under 65 who are living in nursing homes. We also carried out 28 visits with people directly affected by this issue. The majority of this group were people under 65 who have resided or are still residing in a nursing home. Overall, this investigation found that Ireland still has progress to make in advancing from a medical model of disability to a social model, and that various changes need to be made to the system to facilitate a person-centred approach to care and one which is in keeping with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and Ireland’s own strategic approach to disability.
The Health Service Executive reported that, as of 30 June 2020, there were 1,320 people under 65 years of age supported by the Nursing Homes Support Scheme. I have no way of gauging the overall percentage of current residents who are deeply unhappy with their current placements and are actively seeking support to move into the community or who simply wish to be provided with additional levels of support and services to improve their daily lives. I cannot, therefore, suggest that the stories told here reflect the experiences and wishes of the generality of residents under 65. There is no source of official information at present which paints the bigger picture. Consequently, it is not possible either to say that they are not representative. This is why I have framed a recommendation about the need
to gather detailed information on the circumstances of each of the individuals concerned, including the recording and analysis of their will and preference in relation to their placements. However, I would also like to emphasise that each of these stories involves an individual and is therefore important in its own right.
In its response to my draft investigation report, the Health Service Executive strongly emphasised the point that it must operate within the budgets that it is allocated, that these are finite, and that within these budgets they must cater for a myriad of competing demands. I fully accept that that the resources provided to
the Health Service Executive are finite and it must operate within budgets. It would be a matter for the Department of Health and Government to deploy the necessary additional resources to facilitate the implementation of the recommendations in this report. I would hope that in the spirit of the UNCRPD, they will give favourable consideration to doing so.
The current Programme for Government commits to “Reduce and provide a pathway to eliminate the practice of accommodating young people with serious disabilities
in nursing homes”. This has led to a number of number of developments which are welcomed by my Office, as detailed in the body of the report.
The investigation involved an analysis of the issue under six thematic headings:
This investigation has identified systemic issues, which are compounded by a fractured funding model, which does not address the issues highlighted in this report in a sufficiently targeted, coherent and progressive manner. The commitment in the Programme for Government to implement a statutory home support scheme will be necessary to address the current bias in favour of institutional settings.
The personal experiences of a number of people who were interviewed during this investigation give rise to a concern as to whether they fully understood the long term consequences of entering the Fair Deal Scheme. This gives rise to the need for safeguards to be put in place to ensure that all individuals under 65 (and indeed all other applicants as well) who enter into the Fair Deal Scheme are giving fully informed consent in each and every case.
It is recognised that a full resolution of the systemic issues identified in this investigation will take time and the provision of additional resources. Notwithstanding this, it is clear that the lives of some individuals identified in this investigation and perhaps others in similar situations, could be radically improved by the commitment of modest additional effort and resources.
This investigation has identified a number of residents who have expressed a strong desire to move out of nursing homes and who could be quickly facilitated through the provision of relatively modest additional supports.
These include Mark, Francis and Hannah. The example of Francis shows how the quality of life of individuals can be transformed through such minimal effort. The work on the national survey (see recommendation 6.1) should be used to identify other individuals in similar circumstances and appropriate follow up action in their cases should be agreed and implemented by the HSE as a matter of urgency.
In this Chapter I have highlighted HIQA’s call for a more appropriate and progressive form of statutory regulation. HIQA has contrasted the approach in Ireland to that of other jurisdictions. I am convinced that a move to a service model of registration would be a clear improvement in the regulatory regime in Ireland.
That the Department of Health review the current statutory provisions governing HIQA registration and bring forward legislative proposals to support a move towards a service model of registration.
People living in nursing homes should have the same access to primary care services as people living in the community. However, the evidence provided by residents we met suggests that the availability of such services on the ground is at best patchy and at worst non-existent.
Each CHO Area should ensure that those people in their area who are identified by the national database (see recommendation number 6.1) are provided with the same level of access to primary care services as people living in the community.
Access to personal assistant support is inconsistent and inadequate.
The level of requirement should be established and a timescale put in place to deliver this in line with Sláintecare.
This group of people need support to enable them to understand and navigate the system, to have their wishes and preferences identified and acted upon and to have their voices heard.
The HSE has indicated that each CHO Area is encouraged to actively review each placement in nursing homes and that requests for additional supports and/ or alternative placement options should be considered. The HSE says that, in this regard, the assessment process of individual needs should be supported by a suitable Case Management Model.
The Department of Health has told my Office that it agreed that a care and case management approach should inform the approach to assessing the need for placement and that there should be provision for a review of such placements and consideration of requests for additional supports and/or alternative placement options.
A Case Management Model should be drawn up by the HSE and rolled out through each CHO Area within twelve months of the publication of this report.
The framing of policy in respect of people under 65 in nursing homes needs to be underpinned by a rigorous objective assessment of their needs, both at an individual and an aggregated level. This is also necessary in setting targets, assessing progress against them and meeting policy objectives.
A full comprehensive national survey of persons under 65 in nursing homes should be undertaken by the HSE and completed within twelve months of the publication of this Report with all information collated on a centralised database. This database should be regularly updated.
While it is important to address the situation of persons under 65 currently in nursing homes it is equally important that appropriate measures be put in place in order to reduce the possibility, in so far as is practicable, of other people under 65 finding themselves in the same situation. It is acknowledged that, in a very small number of cases, a nursing home may be the most appropriate placement, provided that this is the will and preference of the individual.
This investigation has identified a specific systemic issue of concern which is adversely affecting a particular group of people. From a policy perspective and in terms of resolving this issue there needs to be a definitive policy framework put in place which acknowledges the issue and commits to its resolution within a reasonable timeframe. An example of an analogous policy document would be Time to Move On from Congregated Settings.
That the Department of Health, in consultation with the HSE, draw up and publish an overarching policy framework to remedy the situation of persons under 65 in nursing homes. This should be done by the end of 2021.
The full text of the report ‘Wasted Lives: Time for a better future for younger people in Nursing Homes’ is available on this website
There are over 1,300 people under 65 living in nursing homes in Ireland. Those that spoke with the Ombudsman said they want to live at home. Here are just some of their voices.