Wasted Lives

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.

Some contextual points

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.

Thematic Headings

The investigation involved an analysis of the issue under six thematic headings:

Personal Finance and State Funding

• Many individuals under 65 in nursing homes are dealing with financial challenges on a daily basis.
  • The Nursing Homes Support Scheme (NHSS) is not sensitive to the often very individual circumstances of applicants.
  • Additional charges can be quite costly leaving people with very little, if no, disposable income.

• There is some disparity and discrepancy in how the placements of people under 65 in nursing homes are funded. Although most seem to be funded under the NHSS, others are fully funded by the HSE or fully by personal funding. This adds to differences in people’s financial circumstances.
• Many individuals are paying for nursing home care despite the fact that it is clearly not their will and preference to continue living there.
• A person under 65 with a disability living in a nursing home under the Nursing Homes Support Scheme pays different charges to a person under 65 with a disability living in a HSE residential service for people with disabilities, who pay a Residential Support Services Maintenance and Accommodation Contributions. Individuals who are paying a long-stay contribution may apply for a waiver in certain incidences, whereas this is not possible with the NHSS.
• One of the most glaring financial inequities faced by individuals under 65 with disabilities who require support is that, currently, nursing home care is available on a statutory basis but home care is not. Work is ongoing on establishing a statutory home support scheme that enables people to live as independently as possible in their home. This is a very welcome and significant development in this area and it is a critical enabler in terms of underpinning broader home-based support packages.
• Given that supports, such as home care packages, are funded at a local level, this means that the availability of such services can be impacted by how many people in a particular area have disabilities and the supports necessary to deal with the level of their needs. This means that two people with the same needs in different areas may be able to access different levels of funding.

Informed Consent

• Younger people with disabilities often do not have a meaningful say in decisions that profoundly affect their lives, rather their placement in nursing homes is determined by their level of functioning. Where the person expressed a clear preference to go home, quite often this preference does not seem to be an option.
• Governance in terms of consent to admission to a nursing home needs to be strengthened.
• Consent should be informed consent where all relevant information is available to an individual when making a decision. This should be provided in a format they understand. They should also be provided with alternative options, as far as is practicable.
• Capacity to consent should be established in line with the ethos of the Assisted Decision Making (Capacity) Act (2015).
• When someone is residing in a nursing home and states that they want alternative living arrangements, this should be respected and efforts should be made to facilitate a move so that they are not living somewhere that is not in keeping with their will and preference.

Quality of Life

• Living in a nursing home for older people can affect the quality of life of a younger person. Usually, this is not related to the quality of care provided by an individual nursing home but rather the appropriateness of placement. Younger people have a particular set of needs, which are often different to those of older people.
• Nursing homes in Ireland are largely designed for older people and this is their main focus of care. This means that staff training and the nature of the service provided are more focused on this age group.
• HIQA has suggested a move to a service model of registration and regulation. This would assist in focusing on the specific needs of individual residents.
• Younger people in nursing homes are often lacking in autonomy and have limited opportunity to make everyday choices.
• Social programmes and recreational activities in nursing homes are often not focused on the needs and preferences of younger residents. They are often not age-appropriate.
• Young people in nursing home often feel lonely and do not always have access to peers of their own age and their own choosing. Many have little opportunity to leave the nursing home during the day.

Access to Services

• Younger people can have difficulty accessing services when resident in a nursing home. These can include:
  • Primary care and related services
  • Rehabilitative services
  • Personal Assistance service
  • Meaningful activities and community inclusion
  • Employment and training
  • Advocacy
  • Safeguarding
  • Respite

• Difficulty in accessing support services in the community can play a role in the admission of younger people to nursing homes. These can include:
  • Home support
  • Personal Assistance Service
  • Personalised Budgets
  • Rehabilitation
  • Domiciliary ventilation
  • Primary care and related services
  • Difficulty in accessing services also applies to service beyond the scope of this report, such as housing.
  • Difficulty in accessing services is linked to the lack of a uniform approach to applications for such services and unclear eligibility.

Navigating the System

• Disability services are not always customer oriented, open, and accountable. They can be difficult to navigate.
• Although information on services is available, this is fragmented and there is no one comprehensive information package that includes relevant points of contact, an outline of rights and entitlements as well as a road map as to how to apply for and access any relevant support schemes.
• All individuals under 65 in a nursing home or at risk of being admitted to a nursing home should have timely and on-going access to a case coordinator within the HSE.
• Issues with interagency cooperation and communication can cause difficulties for service users. It can lead to excessive bureaucracy and mixed messages.
• A uniform, standardised process should be in place for applications for all services. Service users should have no difficulty establishing what services they are eligible to apply for, where they can apply, how services are allocated and how decisions are made. This should not just be the case for services that are in place on a statutory basis, as is currently the case.
• All decisions in relation to an application for services should be notified in writing with the rationale for the decision provided. There should also be an appeals process in place. This is not currently the case for all disability related services.
• There is a lack of clarity in relation to entitlement and eligibility for services. Although the HSE states that allocation is based on need, here is no statutory entitlement to services, even if someone is deemed to need the service. This can leave individuals in a very vulnerable position.
• Given that allocation is based on need, there should be a uniform standardised assessment available that operates from a holistic perspective. This should extend beyond health and education. There is no such assessment currently in place for adults with a disability. The Single Assessment Tool was developed for older people and the Assessment of Need is available for children only and has a limited scope.
• At present, not all support provided is person centred.
• Once admitted to a nursing home, it can be very difficult for a younger person to move to alternative accommodation. This is often related to the fact that they are deemed ‘safe’ and therefore less of a priority in terms of accessing services.

Chapter One: State Funding and Personal Finances

1.1 Finding

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.

1.1 Recommendations

1. A ring fenced annual budget should be allocated to each CHO Area in order to improve the quality of life of each of these individuals and to assist them in leaving nursing homes, if that is their preference, and to support and enable them to enter into more appropriate living arrangements.
2. The new funding model should ensure that individuals in the community retain sufficient money to allow them to lead an ordinary life.
3. The budget allocated to each CHO Area should be proportionate to the number of people under 65 in need of such support within the CHO’s geographical area.
4. The business plans for each CHO Area should set appropriate targets and progress should be reported to the HSE annually, particularly in relation to the reduction in numbers in nursing homes.
5. A target date for the completion of this programme should be set and agreed with the Office of the Ombudsman.

Chapter Two: Informed Consent

2.1 Finding

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.

2.1 Recommendations

1. The HSE, in conjunction with the Department of Health, should draw up strict procedural guidelines for staff involved in processing Fair Deal applications and CSAR forms with the aim of ensuring that fully informed consent is provided and documented in each and every case. Further guidance should also be provided for Local Placement Forums/Integrated Decision Making Forums in view of their important oversight role.
2. While the Assisted Decision Making Act is not fully commenced the principles enshrined in that legislation should be used to underpin the guidelines.
3. An audit system should be put in place to ensure that adherence to the guidelines is monitored and appropriate follow up action taken in light of any adverse audit findings.

Chapter Three: Quality of Life

3.1 Finding

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.

3.1   Recommendation

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.

3.2   Finding

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.

3.2 Recommendation

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.

Chapter Four: Access to Services

4.1 Finding

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.

4.1   Recommendation

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.

4.2   Finding

Access to personal assistant support is inconsistent and inadequate.

4.2 Recommendation

The level of requirement should be established and a timescale put in place to deliver this in line with Sláintecare.

Chapter Five: Navigating the System

5.1 Finding

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.

5.1   Recommendations

1. A case coordinator (key worker) should be appointed by the HSE for each individual included in the national database.
2. A comprehensive information package should be drafted by the HSE aimed specifically at these individuals. This should include relevant points of contact, an outline of rights and entitlements as well as a road map as to how to apply for and access any relevant support schemes and services such as relevant NGOs, the National Advocacy Service etc.

5.2   Finding

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.

5.2 Recommendation

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.

Chapter Six: Chapter on Policy and Human Rights

6.1 Finding

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.

6.1   Recommendation

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.

6.2   Finding

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.

6.2   Recommendations

1. An alert system should be put in place by the HSE throughout the health sector, but in particular in the acute hospital sector, to identify in future, at the earliest possible stage, individuals under 65 who, because of their circumstances, may end up in long term residence in a nursing home. The details should be notified to the national database (see 1 above) and an action plan should be put in place to avoid long term placement in a nursing home if that is the individual’s preference.

2. A date should be set after which there will be no long term admissions to nursing homes by people under 65 unless it is their express wish to be so admitted and a plan developed to ensure that the necessary resources are made available to achieve this.

6.3   Finding

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.