Oireachtas Joint and Select Committees
Thursday, 24 June 2021
Joint Oireachtas Committee on Disability Matters
Younger People in Nursing Homes: Discussion
The purpose of today's meeting is to discuss the report entitled Wasted Lives: Time for a Better Future for Younger People in Nursing Homes. On behalf of the committee, I extend a warm welcome to our guests, Dr. Kathleen MacLellan, assistant secretary, and Ms Susan Scally, principal officer, from the Department of Health and Mr. Bernard O'Regan from the HSE. I am also delighted to welcome Mr. Peter Tyndall, Ombudsman, and Ms Sarah Cooney, principal officer, from the Ombudsman's office.
I remind members they are only allowed to participate in the meeting if they are physically located on the Leinster House complex or the complex in the convention centre when the Dáil or Seanad is sitting there. In this regard, if members are joining this meeting remotely, I ask them to confirm they are on the grounds of Leinster House campus or the convention centre to make a contribution to the meeting. For anyone that is watching the meeting publicly, witnesses are accessing the meeting remotely. Due to these unprecedented circumstances, I ask them to bear with us if some technical issues arise.
Before we commence with formal proceedings, I must begin with some formalities to advise in relation to privilege. Witnesses are only directed to give evidence connected with the subject matter of these proceedings. Witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity in such a way as to make him or her identifiable.
I advise the witnesses giving evidence from a location outside the parliamentary precinct to note the constitutional privilege afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on whether or the extent to which the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from other jurisdictions should also be mindful of the domestic statutory regime and if they are directed by the committee to cease giving evidence, they should do so immediately.
Members are also reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity outside of the House in such a way as to make him or her identifiable.
I call on Dr. MacLellan to make her opening remarks.
Dr. Kathleen MacLellan:
I thank the Chair and committee members for the invitation to attend today. I am accompanied by Ms Susan Scally, principal officer, Department of Health and Mr. Bernard O'Regan, HSE assistant national director for disabilities. The Department of Health welcomes this opportunity to come before the Oireachtas Joint Committee on Disability Matters to discuss the findings of the Ombudsman's report arising from his investigation into the placement of people under 65 in nursing homes.
The publication of the report is very timely given work under way to implement the programme for Government commitment to reduce and to provide a pathway to eliminate the practice of accommodating young people with serious disabilities in nursing homes. The Sláintecare vision and commitment to achieving equal access to services and enhanced community care is fundamental to building health and social care services that meet people's identified care needs at community level.
The Department of Health is committed to progressive realisation of the rights set out in the UN Convention on the Rights of Persons with Disabilities, in particular those set out in Article 19 on living in the community. We are committed to supporting all people with a disability to enable them to reach their full potential in all aspects of their lives in line with the Transforming Lives programme. The HSE National Service Plan 2021 provides more than €2.2 billion which will enable the delivery of services and supports this year to about 56,000 people in Ireland who require specialist disability services. This represents a 7.5% increase on the 2020 disability budget and reflects the strength of the Government's commitment to improve the quality of life of people with a disability. More than 60% of this budget is expended on the provision of residential support services, where 1,359 designated or HIQA-registered services across the State are providing over 8,000 disability residential places.
Approximately 1,300 people under 65 are living in nursing homes, based on nursing home support scheme data. It is important to acknowledge that nursing homes form part of the continuum of care, providing supports and care for clinically assessed complex medical and social care requirements which cannot be supported in the person's home. However, the Department of Health and the HSE fully recognise that within this cohort are persons under 65 years of age in respect of whom a nursing home is not the option that best matches their care and support needs. The HSE is, therefore, fully committed to identifying alternative solutions to support those who wish to move out of nursing homes and back to the homes of their choice. This is in keeping with the Transforming Lives programme, which highlights the need of people with a disability and their families to have a say and to access the supports they need to live fully included lives as valued members of the community so they can enjoy greater independence and choice in their daily lives.
Progressive realisation, in line with Article 4.2 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, requires a planned, systematic approach to tackling gaps in service provision. The Department, working in partnership with the HSE, is putting in place a step-by-step approach to address the findings of the Ombudsman's report. The HSE is establishing a steering committee to develop an action plan to progress implementation of the recommendations of the report. In the meantime, work is advancing on a pilot project to provide accelerated and focused support for the transition of 18 people under 65 years of age from nursing homes to homes within the community this year; a mapping and consultation exercise to identify the number of people with disabilities living in nursing homes who wish to access an alternative support service in the community, with a project lead currently being recruited by the HSE; and the progression of a review of existing case management capacity with a view to its further development. The pilot project has been allocated €3 million in 2021 as part of a new €100 million funding package for disability measures this year. These measures provide for more than 100 more community-based residential places, the decongregation of a further 144 people to homes in the community and the provision of additional home support hours, intensive home support packages and personal assistance to enable those who live in home environments to do so more independently. The pilot project and the mapping exercise will provide a better insight into the will and preference of those under 65 years of age living in nursing homes and how their support and care needs can be met. This is in keeping with a population needs assessment approach based on population profiling and segmentation as committed to by Sláintecare, which allows for the development of planned new services designed around the needs of each specific population, ultimately leading to provision of the best care as close as possible to people's homes. In addition, the disability capacity report is finalised and will, through demographic and disability projections, provide robust data for planning for health and social care disability services for a ten-year period up to 2032.
The progress of the statutory home support scheme is a key enabler to providing more alternatives to nursing home care and wider opportunities for people to live fuller, more independent lives. The scheme will provide for the financing and regulation of home support services in order to provide equitable access to high-quality services based on a person's assessed care needs. Developmental funding of €150 million is being provided for home support services in 2021. Some €140 million of this investment is to deliver 5 million additional hours of home support over and above the National Service Plan 2020 target, bringing the total number of home support hours to be delivered in 2021 to more than 24 million. This includes €10 million to roll out the interRAI standard assessment tool and the establishment of a national home support office. In April 2021 the Government gave approval to the Minister for Health to draft a general scheme and heads of a Bill to establish a licensing framework for home support providers. The system of regulation will ensure public confidence in the services provided as well as safeguarding service users.
The Ombudsman highlights challenges accessing primary care services such as physiotherapy, occupational therapy and speech and language therapy. While individuals living in nursing homes, irrespective of age, have the same level of access to primary care services as individuals living in the wider community, the Department acknowledges the need to reduce waiting times and improve access to services for those individuals who have care and support needs, whether they live in the wider community or long-term residential care. The Sláintecare reform process commits to develop a plan to reduce waiting lists, which, along with focused efforts to enhance care in the community, is key to achieving this objective. In 2021, €150 million of new development funding has been invested in an enhanced community care programme which, among other things, will see community health networks established across the country, with about 2,000 new front-line nursing and therapy staff to be recruited. In addition, Sláintecare care redesign funding of €2.29 million for 2021 is supporting the introduction of a managed clinical rehabilitation network demonstrator project involving the development of community neuro-rehabilitation teams. The lessons from this demonstrator project will inform implementation of the neuro-rehabilitation strategy across each community healthcare organisation, CHO.
The Department, taking account of the nursing homes expert panel recommendations and HIQA's report on the need for regulatory reform, is in agreement with the Ombudsman's considerations on regulatory reform for nursing homes. The Minister for Health has determined a phased approach to examining our legislation with a view to proposing enhancements to the primary and secondary legislation governing nursing homes. The general approach will be a move to a "services licensing system" of regulation.
I wish to take this opportunity to thank the Ombudsman and his team for conducting this report. The Department and the HSE are committed to the implementation of the findings of the report, which highlight the need for a priority focus on actions to improve the quality of life of young people with disabilities and to give them the opportunity to live "ordinary lives in ordinary places" in line with the vision of the Transforming Lives programme.
Mr. Peter Tyndall:
The committee has seen my submitted opening remarks and I do not intend to read them out. If I may, with your permission, Chairman, I will make some remarks in summary. As Ombudsman, much of the work of my office has involved dealing with matters of institutionalisation and congregation, whether they were the consequences of the Magdalen laundries and the redress scheme, direct provision or, as in this case, the situation of younger people in nursing homes. Institutionalisation and congregation have been a theme throughout and it seems to me that they are ones on which we are seeing welcome progress but not necessarily haste. That is my first observation.
The second thing I wish to make very clear is that this report was not a criticism of nursing homes per se. What the report is about is people in nursing homes who do not want to be there and people under 65 in services that are quite clearly not designed for them. I pay tribute to the individuals who contributed to the report, the people living in the nursing homes. Sadly, as the Chairman noted, four of those people have died since the report was drafted, and there are others whom my office cannot contact. If anything, that again emphasises the need for urgency in addressing the issues that have been raised.
I welcome the commitment in the programme for Government, the commitment from the HSE and the commitment from the Department of Health to implement the recommendations of the report. We need first to act to stop further people being admitted against their will. While people are in nursing homes we need to make sure not only that they have access, as we have heard, to primary care but also that steps are taken to improve their quality of life while they await an opportunity to move to the community.
We need active measures to support people to move to the community. I welcome the initiative in the programme for Government but emphasise the importance of urgency.
We do not know the will and preference of these people because, sadly, the only record that we have been able to get is the number of people who receive the fair deal funding. We cannot be sure if the figure of 1,300 plus is an accurate number because we know that other people are in nursing homes funded by different means or may be funding their own time in nursing homes. There is a need to move forward with a database, as the Department has indicated, on a consistent basis to assess not just what people's requirements are but also what their will and preference is. We need to do that as a matter of urgency. That will then provide the basis for the action plan, which is to be set up by the HSE. We welcome its establishment. I have made clear that staff from my office will want to continue to be engaged with that action plan, as we have been in the implementation of other reports. For instance, we were successfully engaged on end of life care.
I am pleased that we have been able to highlight this issue. I am pleased with the positive response and the commitment to get things done. I will want to see that being done with urgency. There are people whose lives continue to not be the lives that you or I would want for ourselves and certainly not the lives that they envisaged for themselves. We have a duty and responsibility to address their needs.
The final thing I want to say relates to the work of an ombudsman. We have sought to give a voice to people who might otherwise be voiceless. We are not a voice for voiceless people. We are trying to let them be heard. That is important. Those who have had an opportunity might have seen the video on my website which accompanies the report, in which the voices of some of those who participated can be heard. There is nothing more powerful than listening to people describing their situations and the despair that they feel, as well as their legitimate aspirations for living a decent, proper, engaged life in their communities and how they do not have the opportunity to do so. I commend that video to members. Listening to people is what we do. The committee might want to reflect on whether the investigative approach taken by an ombudsman and staff to address complex issues of this kind, which involves sitting down and sharing a cup of tea with people, talking with them, listening to them and valuing what they have to say, might be an approach which is more widely used for the difficult issues that we face currently and with historical issues. I ask the committee to think on whether the way that we have been doing things, contrasted with how this report has been compiled, contains lessons for future examinations of complex current and historical issues.
I thank Mr. Tyndall for a fantastic report and for reflecting those voices so passionately and articulately. One thing that we missed from his opening statement not being read out which needs to be raised is the conclusion. He reflects the words of Charles, who felt like he is on a "scrapheap"; Francis, who feels forgotten about; Oliver, who contemplates suicide; and Liam, who describes his room as his world. We have discussions as politicians, officials and people doing jobs, but there are real people whose lives are moving along while we talk about action. They are front and centre. Mr. Tyndall has brought their voices to the table. This committee should ensure that it brings them to the table at some point. That would be valuable.
I am struck by so much but I will cut it down to two points. I hear Mr. Tyndall that there is no criticism of nursing homes. Their purpose is not to provide for the meaningful, full and engaged lives that the individuals at the centre of this report would wish to live. It would appear that it is manifestly inappropriate for them to continue in nursing homes where that is not their preference. That relates to the Assisted Decision-Making (Capacity) Act and the need for us to accelerate the commencement of the final phases of that Act as quickly as possible. I know that we are on a trajectory for June next year but that is too long and needs to happen sooner.
What screams out to me from Mr. Tyndall's opening statement is that we do not actually know. He is estimating. We are using fair deal metrics and such but we need an audit to know who is where and what their preferences are. I am concerned that a long time will elapse and perhaps more people will no longer be with us. When you hear the voices and the despair, as Mr. Tyndall said, that is powerful. It is urgent that we operate as quickly as we can.
In its report, the HSE states that in the meantime, work is advancing on a pilot project to provide accelerated and focused support for the transition of 18 people. If we have a guesstimate of 1,300 and we are only going to do a pilot project for 18, how long will it take? When will the learning be applied? When will the solutions, resolutions and commitment to act arise from that? Pilot projects are fantastic but something more radical is needed when you hear of the real plight of people in institutions in the here and now. I leave this committee to go into the Committee on Children, Equality, Disability, Integration and Youth to talk about past institutions. This is about the current institutionalisation of members of our community. We need to address it. What is the timeline for when we can effectively respond to the needs of the people at the heart of this report?
Dr. Kathleen MacLellan:
I will start and then Mr. O'Regan from the HSE will speak. We agree with the Senator about the urgency and importance of progressing this as expeditiously as possible. The pilot programme has already started. The CHOs are identifying individuals for transition. The HSE intends that those 18 people will be transitioned this year and that lessons can be taken from that to accelerate the movement of those whose will and preference is to move out of nursing homes. A project lead is being recruited this week to commence the mapping and consultation exercise. As has been identified, it is critical that we hear from these individuals about their will and preference, about the interventions that could improve their current quality of life, and about how many of them would like to transition back into the community, where they would like to do so and what kinds of supports would be needed.
Mr. Bernard O'Regan:
In support of what Dr. MacLellan has said, the project lead is being recruited this week and the work on mapping will progress.
Some background work has already commenced to begin to identify locations with a view to working up a plan for engaging with people. In the way the Senator has described it, there are a couple of components to what needs to happen. One is about identifying where people are. The second is about a process of engaging to determine their wills and preferences. There are also aspects such as identifying their support needs, how best these can be met and what needs to be put in place in order to ensure that those individuals are supported into a home of their own, that they are able to make that move confidently and the supports they need are available to them to ensure a positive and enduring transition. That work, as Dr. MacLellan said, has already commenced and we will be looking to progress it as quickly as we can. In the meantime, it is important to acknowledge that as the learning is coming through to us from the work we are doing with the 18 individuals, we will be reflecting that in submissions for the Estimates process as it progresses over the coming months.
I welcome all our guests and thank them for attending the meeting to discuss this extremely important matter. I have a number of comments and questions in response to the opening statements and around the Wasted Lives document. The issue of data was raised here last week in the context of other issues involving disability. The issue comes up again in this context because it is mentioned several times in our guests' opening statements. I should say I am referring to the significant lack of data on the number of people under 65 living in nursing homes. Why are there not proper records of that sort of information? The only records seem to pertain to the nursing home support scheme. How can a health service operate without accurate data to plan for the future?
The disability capacity review is also mentioned and we know about the Indecon report on the cost of disability. I believe both of those have been finalised and yet have not been published. It is extremely important that they are published so that plans can be made for people with disabilities going forward, preferably in time for budget 2022.
Are there cost comparisons between nursing home care and care in the community? Has that analysis been done and do we know what that is?
There needs to be a properly resourced early discharge programme for people who have suffered injury through illness, accident or assault. The Irish Heart Foundation found that 18,000 days were being used by people who were staying in acute hospitals when they did not need to be there. I presume the same thing is happening and people are being placed in nursing homes because the early discharge programme is not there to assist them to go home and receive supports in their homes or communities. It was estimated that over 3,000 people could have received hospital care in the eight hospitals from which data was collected in 2019. That is adding to hospital waiting lists.
Disabled people and their carers frequently tell me they are allocated home support hours without any consultation about what is needed or what suits best. As the Ombudsman's report states, plans need to be drawn up which are person-centred, individualised and integrated. That is extremely important.
We are also being told by Family Carers Ireland and others that we are going to become more dependent on care workers because more people are seeking care. It is now that proper community and home-based supports need to be put in place urgently. It is imperative that the investment is made to accommodate that not just because it is aligned to the UNCRPD but because it is the right thing to do. We must give people the choice to live independently in their own communities.
Mr. Tyndall mentioned he is going to retire shortly. I take this opportunity to wish him a long and happy retirement.
Mr. Peter Tyndall:
I want to reflect on a couple of the issues that have been raised in the first two questions. One of the things we have to ask ourselves when we have a problem is how did we get into it in the first place. The report sets out a number of issues which I think are important and touch upon the questions that have been asked. The first is that we do not have proper mechanisms for arranging for the discharge of people from hospitals who will need support other than, as we have seen all too often, placing them into nursing homes. The second is that we have a funding system which is heavily biased towards nursing home care. There is a statutory scheme to support people in nursing homes. There is no statutory scheme to support people in the community. The consequence of that is fairly inevitable. To be fair, the Government has committed to introducing a statutory home care scheme, which is to be welcomed.
The other point that was raised relates to assisted decision-making. People we talk to have full capacity. For the most part, they are people who are more than capable of expressing their own preferences and do not need access to that scheme. However, many other people in this context will need that access. Many people said to us that they did not realise what they were letting themselves in for. Quite a few of them thought they were going in for short stays. It is important that there is great clarity when people are being admitted to nursing homes so that they understand the consequences for them, particularly the consequences of accepting funding.
Deputy Tully asked why there is no data. Once people are admitted, they are, essentially, off the books. They do not have link workers and there is nobody within the system whose responsibility they are. That is why there is no data about them and that is why one of the first recommendations in the report is to create a database so we can at least have a full understanding of the problem. It may well be the case that some of the people concerned are perfectly happy in their nursing homes. I am not sure for how many that is the case, but it may be so, in which case, there is no problem. However, it is likely that a majority of people, or a significant minority at the very least, will want to move out. Until we ask them, we will not know. That is why this is so important.
I will make a final point in response to those particular issues. We looked at people under 65 in nursing homes but those issues I have mentioned about capacity, informed consent and biased funding platforms are also likely to have affected other residents of nursing homes. In all likelihood, there are older people in nursing homes who would not have chosen to go there and would prefer to remain in their communities. I want to be clear that is not to say that only people under 65 have been affected by some of the issues we have identified because clearly other people will also have been affected.
Dr. Kathleen MacLellan:
I concur that data is the critical element in terms of being able to plan and provide for multi-annual planning. We have been very committed to seeing what we can build and put in place quickly. First of all, we obviously have significant data gaps around those who are under 65 in nursing homes. We are absolutely agreed that this mapping exercise needs to happen as a matter of urgency. We have done a significant amount of work to produce a disability capacity report to look at demographic growth and the various interventions, supports and therapies available at home and in residential health settings.
That report is complete and is due for publication very shortly. It will give us a very strong indication of the types of supports we will need to put in place over the next ten years and the costs associated with that. The other data we have been gathering is from the national abilities support system that has been established. It does not have full data coverage yet but it is bringing together the previous physical and sensory disability databases to have a comprehensive database of those with a disability. This is emerging from data that is captured through the Health Research Board and from the HSE. In addition, the HSE has begun a profiling of those individuals who are applying for disability services, which is entered onto the DSMAT system.
All of those pieces of information and data will start to give us a very strong picture of what is happening within the current system and how we can start planning for the future. We know if we can plan in a multiannual way, it will us much better value for money and that means we can provide more supports to individuals and people. We would strongly concur with that. It is probably important to also mention that we recognise that case management is critical to the support of all people with disabilities. I will ask Mr. O'Regan to describe the considerations that are being given around case management.
I will make one comment on consent. Consent is a fundamental principle and is part of the HSE consent policy, which has very significant codes and guidance on it. It is very important that we are assured that the HSE consent policy is being used as it should be and that there is a review of the consent used for individuals who are being admitted to nursing homes.
Mr. Bernard O'Regan:
One of the matters referred to earlier was that the HSE will establish a committee to oversee the implementation of recommendations from the Ombudsman's report. That steering group will have responsibility for monitoring and tracking an action plan that will seek to implement all the recommendations. The number of people involved in the case management process structure will be a critical component of that. As part of the action plan, we will review what is currently there in terms of case management, we will see what the gaps are and we will make the case, through the normal processes, for where we need to provide additional resources to meet those gaps. We will also look at the system and practice used by case managers and key workers, including how they engage with people and what their role and function is.
To pick up on one of the points the Ombudsman made that it should not be the case that somebody gets lost in a system, if somebody is moving into a nursing home, albeit it is indicated for a short period, the case manager will have a role in ensuring that situation does not become impermeable. There will be an ongoing process to work with that person and other stakeholders to plan for the person to transition to what would be a more appropriate arrangement in that situation. That is a commitment as part of the work the steering committee and the HSE will undertake.
I thank the witnesses and Mr. Tyndall for his report, which is very important. While I welcome the Wasted Lives report, I must be honest, when I read it I was a little floored because - and we have all gone through the Covid pandemic - lives are so important. Once people are alive and a family member is alive, it is just so important that we appreciate them. Everyone loves their loved ones. I do not know if I took it up in the right context, but I have a concern about the Wasted Lives report so I will highlight it. How many people did the Ombudsman interview for the report? My understanding is that not many people were interviewed for it. I know the Ombudsman gave a summary of the report but I wanted to ask that.
My second question is for the HSE. I understand that the HSE has targeted 18 people to work with for its pilot project and there is €3 million in funding for that. I ask for clarification on whether two people were selected from each of the nine CHO areas. How was the number 18 decided on? In the context of more than 1,300 people, if not more, under the age of 65 in nursing homes, and we spoke about brain injuries, 18 is a very small number. While I welcome it, we should look at a bigger number because it is more important. Can the HSE clarify whether it chose the 18 people on the basis of two people from each CHO area? I ask for clarification on that.
I will also ask about the HSE steering committee and its engagement, which is really good and represents progress. However, as I listened to the speakers, my concern is that we have three Ministers, the Minister for Health, Deputy Stephen Donnelly and two Ministers of State at the same Department, Deputy Mary Butler, who has responsibility for older people, and Deputy Anne Rabbitte, who has responsibility for disability, so three Departments in all. When you are working with three Departments, it is so important that there is engagement, especially with the HSE. I ask Dr. MacLellan what is the engagement with the HSE, especially from the Minister of State, Deputy Rabbitte? I believe she has a very important role to play in this.
On figures, I talked to someone recently and my understanding is that there are 44 people aged under 65 in hospital settings. I know one person who was in a hospital setting for nearly four years. The questions have to be asked. As a Government, how do we solve this situation and what are we doing for people with disabilities and their families? I have another question for the HSE. What are the up-to-date figures for people aged under 65 in nursing homes? How many people are in hospitals at the moment who are under 65 and who are, hopefully, waiting to come out and go into some sort of care setting? While we all welcome the fair deal scheme, and it seems to be the only option, we need other options. I also ask that question.
We also spoke about the Ombudsman's report. The report noted that: "There is no system to ensure that every person has a key worker to enable them to access services." There is no consistency in the system and I ask that that would be a priority. We are talking about young lives, families and children that are affected. It is so important that funding would be targeted at this particular area. Again, we are working through three different Departments, which is my other concern. All the Departments need to work together with the HSE, the Minister, the two Ministers of State and the Ombudsman. I welcome the report but I just have concerns about the figures I am hearing about.
Mr. Bernard O'Regan:
I hope I tracked everything but if I miss a question I ask the Chair to prompt me. On how the number of 18 was selected, we made a submission as part of the Estimates process in the normal way last year. When the final allocations were made through the budget, we worked through the service plan to try to agree the allocation of moneys across the various headings that needed new development moneys and, under those headings, we looked to see if we were confident that we could deliver with that funding. Some €3 million was allocated for the nursing home project and we were confident that 18 people could be supported.
If that turns into 19 or 20, that is all the better. It will not be below 18 but we were confident we could do that. We have asked each community health organisation to look at planning for two people in each CHO, which they are doing, and to use the information they have available to them with regard to who they currently know has indicated an expression to move. Many people, for example, are involved with advocacy services through the national advocacy service and SAGE and have been supported by those. They have self-advocated and have used family advocacy to make the case and to try to work with those individuals. Inevitably, because they are looking at planning for two to three people, hard decisions must be made because there are not more than that and we know that. On the issue of the starting point, we see 18 as more than the commencement of something. We will look to grow that process substantially through the budgetary process. It is resource dependent but we will look to increase what is possible.
With regard to the current numbers, the most up-to-date figures I have are for 31 March of this year. I will try to get more up-to-date figures but members will appreciate that, due to the cyberattack, there is some impact on the availability of data. I will come back to the committee on that. On 31 March there were 1,342 people under the age of 65 in nursing homes. I do not have a figure on the number people under 65 who were in hospitals but I will follow up on that and I will submit that information to the committee.
On the steering committee, we are very conscious that the work in this area is not just about what the disability services are doing, what the nursing homes are doing or what our hospitals are doing. Our intention around the steering committee is to make sure its membership represents the key stakeholders. The service delivery side should include representation from the disabilities area, from older people services, from acute services, and include those covering independent advocacy such as the voice of people with lived experience who have a lot with which to inform a committee like this. We are working to make sure the committee represents key stakeholders so we can make sure it is leading and driving the change that is needed.
Dr. Kathleen MacLellan:
Mr. O'Regan has outlined quite a bit there. I assure members that all of the Ministers are highly committed to working together on this issue. They are very much concerned about what they have read within the Ombudsman's report and they are very keen to see progress. Currently, three Ministers are within the one Department and there is a real opportunity for the Ministers to come together and support initiatives with regard to those people under 65 and in nursing homes.
It is correct that we need to look at alternatives and other initiatives to support people in the home. It might be useful if I mention this year's initiatives in the HSE. Last year the HSE introduced intensive in-home packages that worked very well. This was increased by more than double in 2021. These are packages to support people to continue to live in their own home. There was also an increase in personal assistance hours and funding to support 144 people to move from congregated settings to the community. There are also an additional 102 residential places provided for this year. The importance of the statutory home care scheme cannot be overemphasised. We have separate systems that operate and we are hoping that within the mapping process we can track how people have ended up in nursing homes and the funding schemes that have been utilised for those within those nursing home schemes. This will give us a stronger sense of the pathways and what other pathways we should be utilising. It will also give us an opportunity to identify the costs. This is important as we move towards the Estimates and budget into 2022.
There has been unprecedented investment this year in the statutory home care scheme and we are seeing the benefit of that with the reduction of people waiting for funding for home care hours. We have seen a 45% increase in home care hours from 2017 to 2021. When the health capacity report did its ten-year projections, it identified the need for a 120% increase in home care hours. There is a lot of work to be done here to be able to meet demand.
I am not sure if I have answered all of the members' questions but I am happy to come back to anything we have missed.
I thank the Chairman. I wanted to start with Mr. Tyndall anyway, if that is okay. I have two questions for Mr. Tyndall. I am very aware the discussion today centred around people who have engaged with the fair deal scheme. We do not have a sense, however, of the other people involved here. In the writing and compilation of this report the Ombudsman, Mr. Tyndall, probably has sense of who else is there. I am asking Mr. Tyndall for his opinion. Is it fair to say that the majority of people who are under 65 and who live in congregated settings are contained within that 1,300 or so persons or are we looking at the same number again of people who are self-funded?
One of the things pointed out in the Ombudsman's report is that the fair deal scheme offers a certain amount of care but it does not offer extra therapies, behavioural programmes or communication devices. What we heard today implies we will be living with some level of congregated setting. As people move out of those settings it is fantastic but we will be living with some of this type of care for quite a while. How much of a barrier to suitable care is that fair deal interaction for those people?
Mr. Peter Tyndall:
I will first come back to the issue of the title of the report. It came from a conversation I had with a gentleman in a nursing home who described being admitted as a young man and now being middle aged, and that his life had been wasted. That struck a very powerful chord with me and I wanted to reflect that in the title of the report. I realised it was an emotive title, but the gentleman concerned had that kind of impact. I am sure he would love to speak to the committee to reflect the point the Chairman made.
We had had a small number of complaints to the office with common characteristics, which got us started. We spoke to 28 people individually. We held a workshop with the NGOs who were able to bring us information about many others, and we also looked very carefully at the extensive published research. We had a number of sources to draw on when bringing the report together. That was the methodology. It is set out to some extent within the report but I am happy to go into more detail if that is helpful.
I do not believe there are as many again as 1,300 people. I notice it has gone up by 20 people or so since the last figure we had today, which is interesting. Our sense was that there are small numbers of people who either self-fund or who are being funded from other funding streams. The cost of their care is being met out of other budgets. I suspect this is a small number. The challenge we all have is that there are no hard data. I am very grateful to hear what is being said by the Department of Health and by the HSE today. I look forward to seeing the outcome of that and developing the database.
It was also very clear that there was very little consistency in the way in which people's preferences and needs were being assessed.
We must get consistency in that regard, compile the information and then develop an action plan. That is the way forward. We are hearing that today and I am looking forward to seeing the results of the process.
I also heard what was said concerning people being entitled to the same access to health facilities in the community as are received by others. The experience of the people we heard from was that it was not just a matter of waiting lists. They felt a view was being taken that they should not be able to access community-based care because they were in nursing homes. I realise that is not anybody’s official position. However, these things happen in reality and sometimes it is necessary to go with people’s lived experience. Rather than considering what should be happening, we must ask ourselves what is happening.
Beyond that aspect, I will return to a point I raised earlier. It is absolutely the case that there is no quick solution to this situation. It will take time. Everybody understands that. Doing this properly is costly, difficult and time-consuming. Therefore, many people will continue to live in congregated settings for a time until it is possible to meet their requirements. I re-emphasise the need for a two-pronged approach in this regard. Work must be undertaken to ensure that the quality of the lives of those people now living within the congregated settings is improved while they are waiting to move on.
I thank Mr. Tyndall. It is worth reiterating that we will be living with these congregated settings for some time to come. According to the figures I have, if we are going to be dealing with 18 people each year, then it will be 74 years before we have everybody moved out of congregated settings. That estimate does not include any increase in demographics, which I presume will occur.
My next and final question is more for the witnesses from the Department of Health. Once the pilot is complete and if it is successful, notwithstanding what has been previously cited regarding its reliance on adequate funding being provided, how many people is it expected will be able to move out of congregated settings each year?
Dr. Kathleen MacLellan:
Regarding that estimate of 18 people per year, we expect that we will learn very quickly from this pilot initiative how many people can be moved each year. We must find out what people in this situation want and what their future preferences are, how long such moves will take, what kinds of supports will be needed and what the enablers will be in this regard. We believe that the 18 people being moved this year will provide us with a great deal of useful learning to enable us to plan for the future. We will certainly be seeking to increase the numbers of people involved as much as we can for 2022. However, we have also derived insights from the overall decongregation context within disability services. On average, and even over the last year despite the impact of Covid-19, the HSE has managed to transition 120 people out of congregated settings into smaller homes in the community. The plan for this year, which is on track, is for 144 people to move out of congregated settings and into community homes. As many as 40 new homes will be provided throughout the year for people to transition into from congregated settings. Therefore, we are learning lessons from this process.
As the Ombudsman said, it is important that we get this process right. One of the lessons learned in the decongregation programme is that it takes time to work with people to find out about their preferred community, where they want to live, how they want to live - whether in a shared home or back in their own homes - and the types of supports which will make their lives meaningful for themselves. The challenge in this context is to try to balance the quality of such moves and the ability to create and provide for sustainable moves while also increasing the numbers of people moving out of congregated settings as quickly as we can. We recognise, and it has been recognised in the Ombudsman's report, that it is crucial for these individuals to see themselves as having a place within this programme and to be able to access it.
Congregated settings are a clear example of a State failure to enable individuals to choose to live independently and be part of a community, as required under Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. This report highlights that the people concerned have no option but to live in nursing homes due to the lack of support from the State. Those who were interviewed for the report stated that they wished to live at home, but they cannot. Several people interviewed mentioned that their experience can feel like being in jail. This situation affects at least 1,300 people. As the Ombudsman acknowledges, however, the total could be much higher. I have repeatedly sought information regarding the number of people under the age of 65 in nursing homes in Cork. The HSE has been unable to provide me with those figures.
My first question is for the Ombudsman. He highlighted the lack of a statutory right to home care. Will he elaborate on the impact that situation is having, in specific and general contexts?
I will now turn to the witnesses from the Department of Health. I apologise for arriving late. A meeting of the Joint Committee on Children, Equality, Disability, Integration and Youth was also under way. Deputy Hourigan touched on my next issue. As well as failing to realise their rights under the UNCRPD, forcing people under the age of 65 into nursing homes has significant impacts on their overall health and dignity and puts those people at an additional risk during this pandemic. The language used in the Department's opening statement, and also in the submission it made to the committee in May, does not reflect the seriousness of the nature of this topic and nor has an apology been afforded to the people affected. The commitment given is to transition 18 people under the age of 65 from nursing homes. Overall, that is 18 people from at least 1,300 people, which is less than 2% of the total.
The witnesses referred to this process taking time, but it will take the same amount of time for everybody. Why are we starting with just 18 people? If we started with more people now, the successful completion of this process would presumably take less time. What more concrete assurances can be given to this committee to demonstrate that the Department is responding to the situation with the kind of immediacy required? Will the Department commit to providing this committee with figures for the total number of people under the age of 65 resident in nursing homes and for individual areas?
It is important to acknowledge the work of the Ombudsman in this area. He commenced an investigation on his own initiative and he has amplified the voices of the people affected. I also thank bodies such as the Irish Human Rights and Equality Commission, IHREC, the Disability Federation of Ireland, DFI, and Inclusion Ireland, that have repeatedly raised these issues.
Dr. Kathleen MacLellan:
I thank the Deputy for her questions. I assure the committee of the urgency, the seriousness and the priority that the Department takes in this regard. There is full commitment to working to the programme to transition those living in nursing homes whose will and preference is to move out from those congregated settings. As Deputy Cairns said, we are starting with 18 people this year, but that number reflects the funding committed to the process. We will, however, learn significant lessons from moving these 18 people. We expect and anticipate that what we learn in this regard will give us the opportunity to accelerate the programme and move people out more quickly from nursing homes. We are committed to providing as many supports as we can in the community to support people in their homes and such provision could be undertaken through the development of the statutory home care scheme, investment in intensive in-home support packages and the ongoing decongregation programme.
We see and accept in respect of the Ombudsman’s report the importance and urgency regarding the people involved being able to provide us with information concerning their will and preferences and then determining what we can do to support them to move out. The mapping exercise the HSE is commencing will be critical to this aspect. It will provide us with the information we require to enable us to plan to support the individuals concerned as much as we can and as quickly as we can in the next short while. I again assure the Deputy of the priority the Department is placing on this work programme.
I have a quick follow-up query. A funding issue was referred to in explaining why only 18 people are part of this scheme, out of a total of more than 1,300 people. That issue needs to be rectified. This congregated settings issue arises repeatedly in the work of this committee. We are aware of the extent of this massive issue, but what is being proposed as a way to start addressing it is to move 18 people out of the 1,300 affected overall, and that is the minimum number of people living in these congregated settings who should not be there.
As a committee, we must stress to the representatives of the Department that we reject that approach. We need a much more urgent approach to be taken to address far more than just these 18 people. I acknowledge that Dr. MacLellan said that we must learn from the experience of these 18 people as we go along. However, we know, and we do not need to relearn, that we cannot leave people in these settings any longer. Therefore, urgency must be placed on getting more people out of these congregated settings, rather than undertaking a pilot project involving 18 people. We know these conditions are not suitable and we do not need a pilot study of the situation. We require a much more urgent approach concerning all the people living in these congregated settings.
Dr. Kathleen MacLellan:
I thank the Deputy for her questions.
We absolutely accept the importance of transitioning as many people as we can. Our budget this year was €2.2 billion for disability services. The additional €100 million we obtained for disability services, which was significant, has provided for more than 100 additional residential places. It has allowed for decongregation of 144 this year and places for the 18 nursing home transitions. We accept the need to use the data to build for multi-annual funding. We see the imminent publication of the capacity report as being critical to that so that we can plan for demand for disability services in the next ten years through demographics and disability needs. Planning for the future over years is critical.
Dr. Kathleen MacLellan:
No, absolutely not. What we are saying is the capacity report provides projections for the next ten years in order that we can plan in terms of the overall demand for disability services over that period. Within that we can see the types of services that are needed. It is similar to the health service capacity report which looked at home care, hospital beds and hospital utilisation. Disability services were not part of that report and we felt it was critically important we developed a disability capacity report so that we could plan for all services, whether they are therapy, residential places or other interventions that are required from respite to day services over a ten-year period.
Is there anything we can do as Oireachtas Members and as a committee to get the funding to speed this process up? It is not acceptable it is 18 transitions out of 1,300. How might this be achieved much faster?
Dr. Kathleen MacLellan:
We consider the focus and attention that has been placed on these individuals through the Ombudsman's report, and the opportunity to speak to today's meeting and the committee's support as being very helpful as we move towards planning for the future and the processes for 2022 and beyond. The committee's focus on this is very helpful. I imagine Mr. O'Regan would say the same about the HSE, that having that focus has shone a light on this work and what needs to happen very quickly. The establishment of the steering committee and the action plan within the HSE are critical to that. The sooner we have that plan the better. We are very aware it is important we create transparency around the establishment of that committee, its work and the timing of its interventions.
I thank the Ombudsman and the officials from the Department and thank them for their opening statements. My questions are based on the information in their statements and things I found striking.
In the Department's commitment to undertake a national survey to ascertain the exact number of individuals who find themselves living involuntarily in nursing homes, assess their will and preference and log a national database in this regard, it has accepted the recommendation from the Ombudsman's report. Will the officials clarify if this process will commence within 12 months or if that is when it will be completed? Is the survey within the remit of the steering group referred to or are the initiatives separate? Will the steering group include disabled members? If not, will the HSE consider including people with direct lived experience on the panel as per article 4 of the UNCRPD?
Dr. MacLellan mentioned the new database with 36,000 disabled people in it. However, there are more than 600,000 disabled people in the country. It is not possible to make informed decisions with such partial representation. How can that disparity be addressed?
On the selection of the 18 people under 65 years who are living in nursing homes. It is broken into two people per CHO. How will that be selected? What will the determining criterion be? Will it be the availability of accessible housing? Does it relate to the care package needed by each individual? Is it the length of time he or she has resided in the home? I would appreciate some elaboration how these transfers will be decided. The important question is where is the voice of the people in the nursing homes? How are the people being identified locally? Is it being left up to those who speak loudest? What is the fairest way of doing it and ensuring there is equality, equity and transparency?
Will the HSE comment on the irony that those living in nursing homes found it difficult to access primary or social care supports? Institutional living is often justified through a rationale of access to services. Following the report, what is being done to combat this lack of access to services? A constituent of mine, Ms Jennifer Hynes, falls into that category. She has had huge difficulties in accessing primary or social care supports. That was a major factor in why she entered the nursing home scheme in the first place. It was not something she wanted or that she wants to continue.
Is there a commitment to provide the number of personal assistance hours needed by individuals to live their chosen life? Minimum hours are being provided, making people prisoners in their own homes. This is another form of institutionalising disabled people.
Mr. Peter Tyndall:
An earlier question raised the impact of having a statutory scheme for nursing home support and not having a statutory scheme for home care. I fully appreciate our acute hospitals are under great pressure and that finding opportunities to ensure people are able to move on when they no longer require an acute hospital bed is a very important part of managing our healthcare. That is a job the hospital groups and the HSE have to do. If the only money you can get to allow somebody to move on from a hospital bed or the only funding available on a statutory basis to support somebody in such circumstances is funding to support that person in a nursing home, it seems inevitable, although you could not prove it as a consequence, that that is the outcome most likely to occur. That is why there is a focus in the report on the need to ensure we have a funding scheme that is not biased towards institutional care and that we have proper attention given to processes designed to enable people to move on quickly from acute hospitals when they are ready to move but not putting them at risk of a life of institutional care.
I think most of the questions were directed towards the Department of Health and the HSE but I will pick up the point on personal assistant hours. If people are to be enabled to live engaged lives within the community, the bare minimum number of hours will not do that. I know of people who have quite restricted lives as a consequence of their only assistance being the very basic care. Therefore the opportunity to get out and about and engage with people and so on is restricted. That is an important point which is also made in the report.
Dr. Kathleen MacLellan:
I will pick up on some of the points relating to the statutory home care scheme. I concur that it is critical that we have a single assessment and that the decision is not made about what scheme people go into or where they end up before they have the assessment. We are introducing the interRAI assessment as the standard assessment across the country and we are assessing, through the personalised budgets project, whether that or the Imosphere assessment is the best one to use for those with disabilities. These are standard, comprehensive assessment tools, which look at a number of areas from physical assessments to neurological assessments to a frailty assessment, if necessary, or other assessments. The use of this type of assessment, whether somebody is being assessed in hospital or within the community, will change the landscape. It is used extensively in home care schemes and other schemes in countries like New Zealand and Canada and we are learning from those. It is absolutely essential that we create an assessment and fund that assessment. A decision will then be made with the individual as to whether he or she will have care in the home, the type of care involved, the supports that are needed and whether long-term care is needed. Reassessments are also put in place. Those things will all form part of the statutory home care scheme that is under development.
The other important innovation is the task force on personalised budgets. This is a real innovation to see whether individuals who are allocated their own personalised budgets can decide on the type of care they need and where they need it. Currently, 32 individuals have been allocated personalised budgets but the intent is to grow that up to 180 participants. Through that we can take lessons as to whether we can introduce a broader form of personalised budgets.
I apologise if I was not clear about the data systems. The national ability supports system is there to gather information on the 56,000 people who access the specialist health and social care supports within the health system. That includes people with an intellectual disability and those with a physical or sensory disability, rather than all those who identify themselves as having a disability either through the CSO or other systems. It relates to planning for the health and social care systems.
I concur that there is a cross-Government aspect to this. If we are truly to support people with a disability, we need to be working with the Departments responsible for transport and housing - which we are doing in relation to the development of a new housing strategy - as well as across education. There is a real need for all our Departments to come together if we are to take a holistic approach to supporting those with disabilities, whether that is those who identify as such or those who have come through our specialist health and social care systems.
There were a number of questions about the steering committee. It might be useful if Mr. O'Regan took those because he will have some information that will be of help to the committee.
Mr. Bernard O'Regan:
I can confirm that people with lived experience of disability will be members of the steering committee. All of the committees that we are establishing in the area of disability are seeking to include people. That is reflected in other work we have going on and this will be no different. We see it as a critical thing to do in order to ensure that we co-produce the right answers and supports for people.
As regards what is happening to improve access to primary care, there is substantial investment in the development of primary care services in the national service plan this year. That will lead to the recruitment of about 2,000 additional therapists and staff as part of the enhanced community care, ECC, reform programme, which is also about developing community health networks. The growth of that primary care service should also have a beneficial impact for people in nursing homes on the basis that they have the same right of access to those services as every other citizen.
A question came up earlier about making information available to the committee. I will provide the information that we have available, as current as it is, both on a national basis and by county where we have that. The only proviso I would put on it, to which the Ombudsman and others referred earlier, is that the data we have at the moment are primarily based on the NHSS data. Until we complete the data gathering and the survey, we will have a gap in terms of knowing whether that is the full number.
The witnesses are very welcome. Like the other committee members, I am very concerned about this issue. I have a few questions I would like to run through. One of the witnesses mentioned earlier that there was funding for recruitment and that it had started this week. That funding was supplied six months ago. What was the delay in that recruitment process? All of a sudden the HSE is interviewing people in the week of this committee meeting. That is a great coincidence.
In 2011, the Time to Move On report was published and now we are creating a pilot programme. Why was that report on the shelf for ten years and what was done in that time? What are the costs of moving an individual out of a congregated setting? Who is currently funding the under-65s in these nursing homes? Does that come under the fair deal scheme with the HSE? Mr. O'Regan mentioned that there was only funding for 18 individuals in the pilot programme. The State is funding and paying for people to be in congregated settings at the minute. The 1,000 extra people who are currently in congregated settings are not unfunded. Are there any moves to utilise the money that is being spent now and broaden its use to get people out of congregated settings far quicker, using the information we are getting from the pilot scheme?
The Minister of State, Deputy Rabbitte, is deeply passionate about this issue and is committed to finally getting this shame eliminated. What is the Department doing to find real, solid pathways for looking after individuals? That might be through neurological triage, regional and community triage or step-down community triage to look after them when they leave acute care and find the best next step for them, whether that is going into assisted living or going back into their own communities. What paths are available now? We do not want any more people going into these settings. We need to stop this, not increase the figures going into homes, and not make the situation worse. Alongside the pilot programmes to get people out we need to make sure we have programmes to stop them going in, or we will just continue the cycle of having more than 1,000 people under the age of 65 within congregated settings.
Mr. Bernard O'Regan:
The recruitment was not designed to happen this week in coincidence with this hearing. We had hoped to conduct the recruitment some time ago but the cyberattack had an impact on it. Getting it advertised to applicants and so on also contributed to some of the timing around it.
I must clarify that the Time to Move On report was about people living in disability specific congregated settings. Over the last number of years there has been a programme of implementation of transitions with the people who were included as part of that programme. The work that was done at the time did not include those in nursing homes because the focus was on services that were directly funded through the disability budget.
The Senator asked about the transfer of funding. For example, if people are funded through the fair deal scheme and have some funding ,why can that not be used? Dr. MacLellan might want to comment further on that. The funding of the fair deal, which is a statutory scheme, has a specific purpose through the older people's budget stream. It is not funding that can transfer with the person into a community setting. We need to be able to find new moneys to support the person in the community. Consequently, if somebody moves from a nursing home placement into another arrangement that can be supported then the fair deal funding is available for use by somebody else who might need it.
On that point, the fair deal funding is not supposed to be used for the under-65s. We are breaking our own rules by using it for the under-65s. Surely some flexibility can be found to create a better instrument to get that money. We are already breaking rules in using it for people under the age of 65. Are we breaking our rules in moving people on out of hospital and putting them into a nursing home?
Dr. Kathleen MacLellan:
I will respond to a few questions and we may have to come back to the committee on those questions we cannot answer. At the time of the introduction of the nursing homes support scheme and the Act, a decision was taken not to exclude those under the age of 65 to ensure there would not be discrimination in terms of access to the scheme. Different funding mechanisms are currently being utilised with respect to those who are under the age of 65 in nursing homes. Specifically the HSE has agreed in its mapping exercise to do an assessment of the different funding schemes being used. That will help us to create a concrete pathway to how we might manage the funding in the future. Regarding funding, more than €4 million is being provided for decongregation of 144 people from disability congregated settings. The Minister of State, Deputy Rabbitte, is passionate and clear in her direction on the importance of accelerating the moving of those who are aged under 65 in nursing homes. The Department and the HSE are taking that seriously with respect to the establishment of the steering committee and the action plan.
In terms of pathways, what we will learn from the demonstrator project regarding the newer rehab strategy is critically important to create a number of pathways for those individuals who are coming to access our disability services in other ways. I am referring to those who were not born with a disability or those who acquire a disability throughout their lifetime. It is important we build those pathways whether through the intensive home care packages, the newer rehab strategy, our home care services or our personal assistant, PA, supports. We are conscious of the need to build all those supports across the whole set of care. As we identified earlier, it is important this is person-centred care and individualised for those people in order that we can support their will and preference inasmuch as possible in the types of supports that will provide for those people having meaningful lives. We have found within the decongregation programme from disability settings it is important to take the necessary time and have a number of meetings with the individuals to give them the opportunity to talk through and outline their will and preference in that way and then the HSE can work through the types of support or package that would be helpful to them. I am not sure if I have missed any questions and I apologise if I have.
I have been listening intently to what has been said. First, I compliment Mr. Tyndall on his report. I also compliment the HSE and the Department of Health on their presentations and on the information they are providing. I said at the first meeting of this committee there are some things we as politicians and I as a national politician would not be very proud of. Mr. Tyndall put it well when he stated in his presentation "A society should be judged by the way it treats its most vulnerable ...". That is where we are at today. We are discussing an issue the management of which we should not be proud. How we got here is irrelevant. We are here now. We need to make sure we provide the level of care needed and we get people out of the trap of being in a nursing home simply because there is no other solution for them. I welcome that a private scheme is being developed. I am encouraged by that but running a pilot scheme will take some time. We need to give people hope. I note from Mr. Tyndall's report that some of the people he interviewed have passed away in the meantime. For everybody’s sake, we need to make sure we do this as quickly as possible.
The lack of data is concerning regarding the 1,300 people in nursing care settings who are under the age of 65. What is their particular reason for being there? Some people under the age of 65 are in nursing homes because they have an acquired injury. They will go home when adaptations have been carried out in their homes. The cost of these adaptations seem to fall to the local authority, which provide some funding, but what is needed in many cases is far beyond the reach of the local authority housing adaptation grant. If people can be moved back home from a nursing home setting their home setting needs to be of a standard such that they can live a quality of life of which we can be proud.
The statutory home care scheme is being developed and it is important we push on with that. I am sure the reason we have landed here is a lack of resources. I will put my hands up and say it is due to a lack of resources. There are also priorities and sometimes the most vulnerable do not get priority because they are not able to shout the loudest. That is one of the reasons we, as a committee, have the witnesses before us to get a sense from them of what is happening. We need to work with them and there is a mountain of work to be done. We must cut through the red tape. We must also make sure we have the necessary resources and the project managers in place in the hospital groups to make sure this is delivered as quickly as possible. I guess the average cost to the State of the care of a person in a nursing home is €1,000 per week, which in round figures is €50,000 per year. If we can take a certain number of those people from a nursing home setting and put them into a community setting or bring them back home, the €50,000 per person per annum that would be saved should be put into the budget to bring those people forward.
I am struck by the fact that young people are in nursing home settings. I know from my experience that in many cases it is not the appropriate place for them to be. Sadly, in some cases it probably is the only solution but, where possible, we should make sure with respect to anybody who can be in a community setting or in a blended setting between their home and the community that is what we strive to do as quickly as possible.
I have only one question. In next year's budget how much money will be needed for this pilot scheme to become a scheme whereby a great number of people would transition from nursing homes?
I wish Mr. Tyndall well in his retirement. I am sure we may even refer to his valuable experience and passion for what we are talking about after his retirement because we might need his number. I say well done to him and wish him the best of luck and good health in the next phase of his career. How much will this cost? What is the ask in next year's budget for the Minister to be able to say this is meaningful and there will be €3 million this year? Is it €20 million next year? What is the deal?
Mr. Peter Tyndall:
I realise that question is mostly for colleagues in the Department of Health and the HSE. All I would say is that they should ask for a lot because I do not believe this is cheap. However, sometimes, it is necessary to do the right thing rather than the cheap thing. This is one of those instances where we need to invest to make sure people can enjoy decent lives.
The point about housing was properly raised. It is a major issue. Some of the people with whom we spoke had adapted housing available to them, which made it all the more frustrating for them. An example would be where someone works with a housing provider to make sure he or she will be provided with a house into which he or she can move but then cannot get a support package to allow him or her to move out and into it. Housing is a real issue. My office sees a lot of complaints about access to adaptations funding from local authorities. We need to make sure there is an element of funding for the housing and adaptations required as part of any package because the demand will exceed the budgets that are available to local authorities. I am sure this is something the Department of Health will be working on. If people with disabilities are living in the community and are able to lead engaged lives, that means they should be able to visit their neighbours so this is not just about adapting houses for people to live in. It is also about making sure that all of the housing that has been built in the State can be visited by somebody in a wheelchair. It does not mean they have to be able to live in it. I understand the issues. Adaptation should also be easy. Simple things like straight staircases allowing for a stairlift, wider doors and enough room in a bathroom are not hugely difficult but often they get left out in the debate about the need to produce units. We should remember that if people with disabilities are living in the community and are your neighbours, they will want to be able to come and see you so that is an important consideration as well.
Dr. Kathleen MacLellan:
I concur fully regarding the housing elements. We are working closely with the Department of Housing, Local Government and Heritage on a housing strategy for disability services. It is also important that we start to see universal design within housing and with new builds so that as Mr. Tyndall said, we start to see that houses which have access for everybody are the norm. We work closely with the Department of Housing, Local Government and Heritage and local authorities. We must work closely with our colleagues across the housing sector to deliver the ambition of community-based settings that are suitable for everyone and are inclusive of those with a disability. We do not have a budget calculated in terms of what is needed for 2022 regarding the delivery of the transitioning of those from nursing homes. If I was to quote a figure, it would not be one calculated on the actual costs that are needed. Working with the HSE, we are committed to work through the calculations required to make a proper bid and a business case around the funding for 2022. That Estimates and planning process is kicking off this week. We commit to working through the information from the pilot programme to create a robust business case regarding what is required across 2022. I do not know if Mr. O'Regan wants to add to that.
I offer my huge thanks to Mr. Tyndall for what was a very moving and important report and to all the witnesses for contributing today. There seems to be two strands when we talk about phased realisation. There is one aspect of phased realisation, which is the gathering of information, the auditing of people's preferences and that survey of work, which is understandable to an extent. There is then the idea of phasing in terms of resource-based dripping through. What I hope has come across very strongly from this committee is that we do not accept an incrementalist approach based on resources to what is a rights issue and an obligation under Article 19 of the UN convention. It is one thing to look to best practice and how we can extrapolate from that but it is certainly the incrementalist approach. That applies on two levels - in respect of this issue and the linked issue of the time to move on and away from congregated settings. I note that €4 million was mentioned for 144 places. I think this should be €40 million extrapolated very clearly even to get towards a fraction of what is needed next year. To be clear, it is one thing when the phased approach is used in terms of good practice but it is certainly not acceptable if it becomes a delay in rights.
I am also concerned about what is happening in the interim. I wanted to highlight a few of the specific recommendations from the Wasted Lives report. Point 2.1 talked about codes for local placement forms - that they would have very clear codes - while 6.2 talked about an alert system. I was extremely concerned when we heard that numbers have gone up by 20. We have been told that there is a pilot to remove 18 people from the situation but we know already this year that there are 20 more people in that situation so we are still moving backwards. What measures will be taken to ensure that over the next year and two years while this is being addressed, we do not see more people under the age of 65 tied into the fair deal programme inappropriately? We talked about individuals and that survey but we may need temporary actions in respect of the fair deal scheme. For example, should it be the case that if somebody is going into residential care - perhaps out of an acute hospital setting - he or she is not placed in the fair deal scheme for the first year or 18 months, especially when we know that a statutory home care scheme may become available, so that there is an interim arrangement or a clear exit pathway from fair deal built in from the beginning? People are particularly vulnerable for a six-month period. I would imagine this applies to many older people in the fair deal scheme as well. I looked at how someone exits fair deal. There is no clear exit pathway if someone chooses to go another route. This is needed. It is about how we ensure that we do not have more people effectively signing into fair deal in this 12- to 18-month period where the delay is on the part of the Government and the Department and there is a temporary measure.
I am also looking at the deductions under fair deal. For example, a dependent child in education is an eligible deduction but an individual's own education is not there as a deduction. It is part of the wrong tool being designed. It is not a tool that envisages somebody under 65 in residential care who wishes to engage in education. In terms of health expenses, it is not clear whether personal assistants or therapeutic services are included in those.
What are the emerging interim measures to avoid a further damaging of rights and a further limiting of options, during the one- to two-year period in which we push for statutory home care? Could Mr. Tyndall please give a brief comment on personal assistants? We have talked a lot about the roll-out of statutory home care, but in respect of personal assistants. Recommendation 4.2 referred to their importance in ensuring that people can live lives with choice and with possibility
Dr. Kathleen MacLellan:
The Senator raised a number of issues regarding codes and local placement forms. Mr. O’Regan might respond to those when the HSE comes in. On funding, we do not have a complete picture. Different funding streams are being used. There are different supports coming through from the disability services to support some of the fair deal funding as well. Individuals are accessing day services or they are being supported through transport and so on. We need to get a full, accurate picture, so that we can identify the best supportive funding mechanism. That is part of what the steering committee will look at through its action plan. They will do a mapping exercise so that we can quickly get a handle on that and make some decisions and recommendations around the funding pieces. There is a strong approach to where they cannot admit new people into nursing homes through that assessment process. Earlier, we described the importance of a case-management approach, so that there is ongoing reassessment and engagement with individuals and nursing homes. That is critical, so that we can continue to meet the needs of those individuals. The Senator described very well how people may change their will and preference. They may consolidate their will and preference over a number of months, as they adjust to new lifestyles and new places. We accept that there will be significant work to get this right around the future funding mechanisms, the ongoing assessment processes, the initial assessment processes and particularly around the use of strong assessment tools like interRAI or the Imosphere assessment tools. We accept that we need to build those assessments to get the placements right for those individuals.
Mr. Bernard O'Regan:
The two recommendations in the Ombudsman’s report that the Senator noted are included as part of the action plan on which we are working, including the alert system, the development of guidance and so on. We will look to expedite recommendations that can make a direct impact. Some of the recommendations are not necessarily resource-led or resource-dependent and are about practice. We will prioritise progressing this as part of the action plan.
Can the 20 added this year specifically be examined this year? I am concerned. People have been referred to residential care, for example, during Covid-19 because community care was perhaps not as available as it normally would have been. Could I suggest that, alongside the 18 that they are exiting, that the 20 new additions would be carefully scrutinised? We have to stop digging. I am concerned about the Covid-19 matter.
Mr. Peter Tyndall:
I refer to a quote from a politician from elsewhere regarding his first law of politics: “When you're in a hole, stop digging.” In this particular instance, preventing admissions or, at least, preventing permanent admissions, must be an absolute priority. I am heartened by everything I hear. As I said at the outset, delivery is where this will be measured. We are hearing the right things politically, which I am pleased about.
I had the opportunity to contact party leaders when the programme for Government was being prepared to highlight some of the emerging conclusions from the investigation, which had not yet resulted in a report at that point. I was pleased to note the commitments in the programme for Government and am pleased now to see that the actions are starting to be taken. However, I would continue to emphasise that there has to be delivery and there has to be urgency. Members have made points about incrementalism. Unfortunately, we have seen, for instance with the decongregation programme, that it stalled at a particular point. It is taking a long time to reach a conclusion. We need to be better at getting to the end of these programmes, once we initiate them, and at doing it in a reasonable time.
The personal assistants point is important. I have been lucky enough to see the way people I know who have had catastrophic injuries can come back from them, or people who have managed to carry on through the impact of degenerative illnesses, which have rendered them disabled. In both instances, by being able to manage their personal support packages, they have been able to make substantial contributions to the world of work in one instance and to the life of their community in another and to the arts. When we talk about this group of people as dependents, we lose sight of fact that they have a rich contribution to make to our communities. Our job is to facilitate and enable them to make that contribution. Often, the best way of doing that is by enabling those who are well placed to do so to control their own support arrangements. If those support arrangements are adequate, they can then tailor them through a personal assistance method to fit them around their work, their daily life, or whatever the case might be. As part of any package of measures, the greatest emphasis that can be placed on giving people decisive ability to manage their own support mechanisms should be an important part of any programme.
I thank witnesses and members. I thank Mr. Tyndall for his report and wish him every success as he retires from his current position. Whatever life holds for him, I wish that he may embrace it in the same challenging way he has done in previous positions he has held. This forms an important assessment of where we are at as a State in how we care for people. Members have expressed their frustrations with the lack of delivery on this. I thank the HSE and the Department of Health for their forthrightness and openness.
On the appointment of somebody to steer that committee, will that steering committee be within the HSE and the Department? Outsiders should be on the committee as well. We should have people who are family members or those in need of assistance themselves, because they always have a better understanding of what is needed and where the challenges are. If that has not taken place, it should. From all the discussions that we have had with Members, there is an urgency to complete the task at hand,to ensure that we do not compound the problem by putting more people through the system. We should stop that in the first instance but also make sure that there is an urgency with it. The committee is examining funding streams of what needs to be done and considered in the budget for people with disabilities. This forms part of it. We will put that forward for discussion at our committee.
The Department of Health and the HSE have to be clear, as well, in their asks. I know that there are many challenges with budgets, but this is a fundamental human right. These are the rights of people with disabilities. We have spoken many times about how states capacitate their most vulnerable. We have been questioned on that many times. Even though we have a great ethos and values in this State, there are vulnerable people who are suffering because proper funding is not in place. This committee , and it came across clearly from its members, must make the strongest possible case for the maximum amount of funding to be put in place. We have the backing of a detailed report from the Office of the Ombudsman on this. We will be referring to that and coming back to it again.
Unfortunately, time has evaporated for the meeting. I thank Ms McLellan, Mr O’Regan, and Mr. Tyndall for their forthrightness in their contributions. We will certainly get back to them. Members will be looking for an update on this as we go forward.