Joint Committee on Disability Matters díospóireacht -
Thursday, 27 Oct 2022

HIQA's Overview Report - Monitoring and Regulation of Designated Centres for People with Disabilities in 2021: Discussion

Chairman

Before we deal with the report, all those present at the committee are asked to exercise personal responsibility for themselves and others in respect of Covid-19.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the person or entity. Therefore, if their statements are potentially defamatory to an identifiable person or entity, witnesses are directed to discontinue their remarks. It is imperative they respect that request.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official in such a way as to make him or her identifiable. If members are within the precincts of Leinster House they have constitutional privilege, but outside of it they do not. Anyone who is joining us on Teams should let us know they are in the Leinster House complex.

I invite Ms Grogan to make her opening statement.

Ms Carol Grogan

I thank the committee for the opportunity to discuss HIQA's overview report on the monitoring and regulation of designated centres for people with disabilities in 2021. I am joined by my colleagues: Mr. Finbarr Colfer, deputy chief inspector of social services, and Ms Ciara McShane, national operations manager with responsibility for disability services. My role as chief inspector of social services within HIQA is to use the regulatory framework to ensure people living in designated centres are provided with good quality safe care and support in an appropriate environment that enables them to live fulfilling lives. The Health Act 2007 sets out that services, also known as "designated centres", which are subject to regulation, include nursing homes, residential services for people with disabilities, and children's special care units. The Health Act 2007 (Care and Support of Residents in Designated Centres for Persons (Children and Adults) with Disabilities) Regulations 2013 and the national standards for residential services for children and adults with disabilities apply to residential services in Ireland. These form the basis of my inspectors' assessment of the safety and quality of support for people with disabilities in designated centres.

At the outset, I acknowledge the work of this committee, including its recent publication on the participation of people with disabilities in political, cultural, community and public life. The report makes a number of important recommendations to support inclusion and participation in political, cultural, community and public life, and the role of active citizenship regarding people with disabilities in society. HIQA will utilise its role as an independent regulator to support a more active model of integrated living for people with disabilities, now and into the future.

The overview report for 2021 sets out the activities of inspectors and the learning from inspections during 2021. As at 31 December 2021, there were 1,401 registered designated centres providing residential support for 9,039 people with disabilities. Inspectors carried out 1,220 inspections in disability services in 2021. Our inspection findings are based on information we gather from a number of sources, including meeting with staff and providers, reviewing records and, most importantly, speaking to residents to hear about their lived experiences.

What we found during the 2021 inspections is that the majority of providers provide a good standard of care and support to people with disabilities. However, there is also a cohort of centres where providers failed to ensure the safety and quality of support for residents. In such instances, our inspectors took regulatory action to ensure providers improved the care and support being provided to people with disabilities.

One of the key areas of learning from the inspections in 2021 was the negative impact of declining levels of compliance with governance and management because of more remote oversight by providers during the pandemic.

As with previous years, the overview report outlines the clear link between well-governed services and safe quality services. During 2021, one in five inspections found that improvements were required to the providers' governance and management arrangements, with non-compliance increasing throughout the year, including in centres where providers had good oversight arrangements prior to the Covid-19 pandemic. This is an area that I, as chief inspector, have been focusing on during the current year. Many providers are now taking measures to re-establish strong governance arrangements.

Furthermore, during 2021 inspectors found that there continued to be significant variance in the level of non-compliance in congregated settings by comparison with community-based settings. At the end of 2021, almost a third of people with disabilities in designated centres were living in congregated settings.

HIQA found that people with disabilities living in congregated settings were more likely to experience a poorer quality of life, with notable inequalities in the overall quality and safety of the services being provided to residents. Furthermore, a higher number of congregated settings than in previous years required improvements to the overall quality and safety of the premises.

HIQA supports the national policy for transitioning people with disabilities from congregated settings to more appropriate community-based places to live and further work is required to ensure that this policy is implemented in an effective and timely manner.

In response to the Covid-19 pandemic, I, as chief inspector, commenced a programme of targeted inspections to assess registered providers' compliance with regulation 27, on protection against infection. The programme aims to promote continuous quality improvement in infection prevention and control, in line with the national standards for infection prevention and control in community services, issued in 2018.

Engagement with providers of disability services is critical to our work as a regulator. We continue to hold provider representative forum meetings and we are running a series of roadshow events with providers and persons in charge across the country next month.

The provider representative forum is made up of representatives from umbrella bodies, including the National Disability Services Association, the National Federation of Voluntary Service Providers, the HSE in its role as service provider, and the Disability Federation of Ireland, along with HIQA's deputy chief inspector and the national operations manager. The forum meets bimonthly. A range of items are discussed and information is shared. Items raised by representatives are discussed and considered and can result in positive changes for all.

This year we are re-establishing in-person provider roadshows in November. The title of this year's event is The Impact of Good Governance – Finding the "Rights" Approach. The provider roadshows offer the opportunity to engage with providers, persons in charge and people participating in the management of centres outside of the monitoring process and share valuable information. They also give providers the opportunity to raise questions they may have on key topics, such as governance and management, human rights and infection control. This year, we are delighted to be in a position to resume our face-to-face provider roadshows, which will be held over four dates in Cork, Galway, Dublin and Cavan. We look forward to seeing and speaking with attendees in the coming weeks.

I would also like to brief committee members of another aspect of our work. Spending time with residents, to listen to what they have to say and to observe what their day-to-day life looks like is an essential part of our work. Earlier this week, HIQA published a report entitled Resident Forums in Centres for People with Disability in 2021.

Over recent years, our staff have met residents in their own groups, in which they have their own supports and feel comfortable speaking to us. In 2021, due to the ongoing public health restrictions due to the Covid-19 pandemic, it was not possible to meet in person, as we had in 2019 and 2020. However, we continued to meet resident groups through online virtual meetings. Our report sets out what residents told us during the meetings. The feedback from residents reminds us all about what is important in the lives of people with disabilities living in residential centres. Residents told us about the improved quality of life for them when they moved to small, local, personalised homes in the community from a large institutionalised residential service.

Listening to the views of residents ensures that we can continue to focus on the requirement for providers to uphold the rights of residents and that the will and preference of people with disabilities are respected. We hope that by publishing this report, others will also listen to the views of residents and ensure these are used to inform their work also.

I assure the committee of HIQA's continued commitment to promoting and protecting the rights of people with disabilities to live in a safe environment. Our report entitled Overview Report: Monitoring and Regulation of Designated Centres for People with Disabilities in 2021 sets out a summary of our inspections and key findings. To further improve services for people with disabilities living in designated centres, HIQA believes meeting provider representatives and resident forums will help improve our standards and ensure better compliance across all regulations.

I thank members for their time and attention this morning. We look forward to answering any questions they may have.

Senator Tom Clonan

The delegates are very welcome. I thank them for coming here this morning.

I have a couple of questions. In the documentation provided, it is noted that there has been a 30% decrease in the number of persons with disabilities living in congregated settings. Have the delegates information as to where those people have gone? I have received hundreds of representations in the six months since my election from, for example, people in their 70s or 80s who have had an adult son or daughter returned to them following the sudden closure of a residential setting. They go into crisis. Some have ended up in this situation. I note 27% of persons with disabilities are homeless. They are on the streets. Has HIQA or any agency mapped where the affected citizens have gone?

There is a timeline of seven years referred to in the Time to Move on from Congregated Settings strategy. I refer to moving out of residential settings. My adult son is on a social housing list for accessible and supported housing. I am told that the waiting list in Dún Laoghaire–Rathdown is 18 years, or possibly 19 years. There is a broader housing crisis. Do the delegates believe the time horizon is realistic? Is it an honest assessment of the wider crisis in housing?

My third question relates to the fact that we have an unprecedented crisis in housing. The objective under Article 19 of the UN Convention on the Rights of Persons with Disabilities is to integrate people into the community. Realistically, however, the housing units do not exist for the thousands of people who remain in congregated settings. In that context, as envisaged in the legislation on the temporary eviction ban that the Houses are considering, should we temporarily halt the closure of residential settings unless there is a viable, safe alternative for the people? Have the delegates a view on that? It is probably not within their remit but they might have a view on it having conducted the research and survey.

In respect of those who live within the community, during the severe weather event called the Beast from the East, I was contacted by several people living in supported environments. One of them, a wheelchair user, told me that on the Tuesday of that week, the Government had issued a series of warnings advising citizens to stay indoors. Their care team told them they would be unable to return to them for at least 72 hours.

That person, the wheelchair user, was given the option of sitting in his wheelchair for 72 hours and soiling himself in that position or lying on the bed with food within reach, and soiling himself there.

I wrote about that case at the time and asked the HSE several times if it had a plan for people living in the community during severe weather events or other disruptions to ensure safety and continuity of care. There is no plan. Are we living up to our requirements under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, and its stated aspiration that people be allowed to live in the community? The elephant in the room is that those alternatives do not exist at the moment and will not until we resolve the housing crisis, which may take a number of years.

Ms Carol Grogan

I thank the Senator for his questions about the closure of congregated settings. The overview report and the residents' forum report highlight that people living in community settings experience better quality of life. We are supportive of the policy to transition people into the community. As part of that, we require the provider to have a plan. We would never close a centre and leave the residents with nowhere to which to move. As part of the transition to the community, the provider must have a plan and we will then register a new house or houses. In many cases, people in congregated settings will be moving to more than one house. As the Senator knows, a congregated setting includes ten or more people, and when they are moved to the community, they could be moving to an individual house or moving in with three or four friends.

I do not have the information as to where congregated settings have closed and community houses have opened but I can get it and submit it to the committee after the meeting, if that would be agreeable.

Senator Tom Clonan

I would be grateful. Must the service providers' plans include returning persons with disabilities to their parents?

Ms Carol Grogan

In some cases, people with disabilities have opted to live independently and have been assessed accordingly. I am not aware of any cases, other than during the pandemic, where some residents returned to their homes because they were afraid they would not be able to see their families. The option for them to return to the designated centre was available.

Senator Tom Clonan

I apologise for interrupting.

Ms Carol Grogan

That is perfectly okay. The housing crisis would have a bearing on the plan. Housing must be available. Part of the plan would ensure residents would be involved in making that decision. As the Senator will see from the report we published on Tuesday, in some cases residents spend a night or two in a house in advance of moving into it. They get to choose their own bedrooms and decorate them. That is very much part of the plan.

We are slightly disappointed by the pace at which people are transitioning out of congregated settings in the context of the closure of designated centres. Our overview report highlights that non-compliance rates are far higher in congregated settings. The transition must be safe and planned. Residents must be involved in that decision-making process and their rights must be upheld when they move. The disability sector is at the mercy of the housing crisis. It is incumbent on providers to find appropriate housing for people within the community in which they want to live and where their friends are. That is important.

The Senator raised an issue in respect of a gentleman with home support. As the Senator knows, we do not currently regulate home support but the intention of the Government is that the regulation of home support will be introduced in the near future. The gentleman the Senator spoke about would come under the remit of HIQA in the future. We would take a serious view of any registered residential centre that did not provide staff. We would take swift action in a registered centre in such circumstances. If the Senator wishes to give me more information about that case, we can look into it. Such a case will come under home support in the future.

Senator Tom Clonan

It was a matter of public record at the time. The details of the case were published widely in the print media. I spoke about it at length on the national broadcaster. There was no response and certainly nothing from the HSE. I made direct inquiries with the HSE in respect of that case and it absolutely refused to engage.

Ms Carol Grogan

In the research we did on home care, providers reported difficulties in getting staff and being able to deliver the number of hours residents require, especially where there was a requirement to travel between houses to support people. That is definitely an area that will be carefully reviewed when home support comes in.

In respect of the appropriate timeline, as I said, we view every individual transition in its own right and will ensure the appropriate accommodation is available for residents. We will only cancel the registration of a designated centre where the provider has not met the required standards. We will work with providers. We prioritise the registration of any new centres to facilitate the move from congregated settings. I will ask my colleague Mr. Colfer if he has anything to add in respect of congregated settings and transitions.

Mr. Finbarr Colfer

I relate to the Senator's questions. We see those challenges within the service. For congregated settings, there is now a challenge in respect of the provision of housing. A number of planned movements from congregated settings have slowed down because of a shortage of appropriate housing. We recognise that. There is no legal measure in place to prevent the operation of congregated settings. There is, therefore, no requirement for congregated settings to close other than the weight of evidence indicating they are not the appropriate services for people. We support a number of plans throughout the country for people to move out of large institutional settings. That has slowed down in the past year, in particular. Those plans are still in place and those providers continue to try to drive forward those plans. However, there has been a delay.

On the community side of things, I am conscious it is not only a matter for congregated settings in the overall and general context of the disability sector. Quite a number of people are involved. The Health Research Board, HRB, provides information in that regard. Quite a number of people who require residential services within the community and who are living with older family members are in inappropriate situations. There is a legacy piece involved on which the HSE needs to move forward. That does not apply to congregated settings only but also applies in the case of people who require residential services and are living in the community with their families. We prioritise those. Each year, there are quite a number of applications to register services in response to a crisis in the community where a person's family members can no longer support them. We always prioritise those. We move forward with those registrations very quickly and ensure that regulation supports the development of those services.

Senator Tom Clonan

I thank Mr. Colfer. I do not know if he saw this but it was recently reported that a lady in the Dún Laoghaire-Rathdown area donated the family home to a care agency. I do not want to comment specifically on her because that is her decision. However, a part of me feels very uneasy about that. We have arrived at a point where a parent, somebody like me or a carer, feels the only option for an adult child is to hand over the family home. This is a situation our guests are monitoring and it is not their responsibility. However, I feel strongly that the State should be providing these supports. There is a broader debate about whether these services should be provided by the State or should be outsourced to charitable institutions or section 38 and 39 organisations.

My fear concerns the 27% of people with disabilities who are homeless. As a parent, that is almost unthinkable but it is a fact. I am just concerned about whether the relevant agencies are prioritising and targeting them for assistance. I do not know. I thank the witnesses for the detail in their answers. I appreciate that.

Senator Erin McGreehan

I welcome the witnesses. It is great to have them here. This is a really important report. A lot of hard work went into it for which I thank the witnesses. It made for difficult reading. It is upsetting and is not a happy picture. The majority provide a good standard of care. For me, "good" is not enough. We should set our standards a bit higher than good. It reminds me of how my mother would say "grand" when things were just about okay. Good is not enough. The report also highlighted that levels of compliance and governance were reducing. Can the witnesses give us examples of lack of compliance and lack of governance and how that translated into an unsatisfactory level of care?

How are HIQA inspections aligned with the UNCRPD? Will the findings in this report change how HIQA carries out its inspections in the future? It is great to see that HIQA is really interested in the voice of the residents. This committee really tries to uphold the motto of nothing about us without us. I always fear that when authorities come, people do not have trust in them. How do inspectors relay to residents that this is non-judgmental, that whatever residents say to inspectors will be safe, that this is a safe space and that when inspectors translate that back to service providers, residents will not be punished, feedback will be listened to and things will change?

The report notes that residents felt that they were not listened to and their rights were often not uphold. How does HIQA relay that to service providers? What guidelines are given? How best do we effect change in those service providers for the residents? The report mentioned regulatory changes. What regulatory actions are taken to uphold the UNCRPD?

Ms Carol Grogan

I thank the Senator for her questions. Governance and management constitute the cornerstone of any safe service. We find that where there are poor levels of governance and management, it affects many other regulations because there is a lack of oversight and a lack of the provider identifying these issues for itself. We do not want to go and identify issues. We want to go in and find that the provider has already identified those and has measures in place and we then monitor those measures.

Again, we found that the level of compliance was poor in congregated settings. In many cases, it was probably as a result of remote oversight arrangements put in due to the pandemic. In that case, providers put in written reporting from the designated centres because prior to that, they would have been going out. Understandably, during the pandemic, they were nervous and were trying to protect residents living in these centres. However, this had a knock-on effect, not just on governance and management but on other areas such as privacy, rights, quality of care and safety of care. We have highlighted many of those in the report.

The other issue relating to poor governance and management and remote oversight is the fact that providers are not speaking with residents directly. In our report and the report we published on Tuesday, we point out that the most important part of our inspection involves speaking with people who live there to hear their lived experiences. The residents' forum, where we meet residents outside the regulatory process, is also hugely important. The feedback from residents to us is that they do feel comfortable talking to us and think HIQA coming in is a good thing. In some cases, they say things do not change and we then follow up as to why they are not changing. Residents gave examples where they were part of the advocacy group. One resident described how they were training to become an advocate so that they could support other people with whom they were living. Residents talked about having a charter of their rights and being able to articulate and stand up for those rights and to call it out where staff or the provider was not supporting the rights of residents.

We are very careful when speaking to residents. First, most centres are very small so it can be difficult to find a private place in which to talk to residents. We are very keen to talk. If a resident does not want to talk to us, we will not do so but we will observe. We will observe interactions between residents and staff and interactions among residents because not everybody gets on with everyone they live with and that can have a significant impact on the quality of life in centres.

Privacy issues are much more profound in congregated settings. Residents told us they did not have a quiet place, they did not have a sitting room, the kitchens were locked and they could not use them, whereas when they moved to community-based settings, they had a sitting room and could watch television in their own room if they wished. They could do the things you and I take for granted and do every day. I might ask Ms McShane to outline how we find poor governance in centres because she goes out on inspections quite frequently.

Ms Ciara McShane

Regarding congregated settings and community-based settings, we have found a higher level of non-compliance in settings where larger numbers are living in campus-based settings. We have found that remote governance had an impact on oversight and auditing of the maintenance and upkeep of premises and, therefore, some residents were living in environments that were sub-par and perhaps not of as high a standard as those in community-based settings. An example might be a kitchen that needs to be replaced, ingrained stains on floors and worktops, cupboards in disarray or a general level of uncleanliness, for example, equipment such as medical equipment possibly not being kept to a high standard in terms of infection prevention and control.

We found a higher level of compliance in community-based settings. For the most part, the houses were maintained to a higher standard and residents were living in a more comfortable and personalised environment. Congregated settings may not be as personalised as you would hope they would be compared with community-based centres.

Ms Carol Grogan

Regarding the question about the UNCRPD, we invested in training in human rights for all our inspectors and all of our inspectors have undergone training. HIQA has also developed e-learning programmes that staff in centres and providers can access, as well as guidance on human rights.

We are looking at how that training is now translating into our inspection process and how we report on the rights of people in designated centres. We have just done our first review. As with anything, there are definitely more improvements we can make in this area. An area I am focusing on for the next couple of years is looking at how we speak to residents about their rights, how we report on that and how we ensure that our inspectors have the confidence to call out those rights when they see them not being promoted or respected.

Senator Erin McGreehan

That is great to hear.

Deputy Dessie Ellis

I thank our guests for the presentation. The work HIQA does is absolutely tremendous and badly needed. It is obviously keeping the person with the disability at centre stage and that is most important.

Ms Grogan mentioned that 1,220 inspections were carried out in 2021. She also said that during the period of Covid, many people were doing a lot of work online. A number of these centres she mentioned failed to ensure the safety and quality of proper support for the residents. Where did she see most of these failures? What actions are being taken to address this decline? Obviously, it was worse during the pandemic because of the isolation and so on. Perhaps she could fill us in on that.

The Covid pandemic was a very challenging time during which there were many issues in both private and public nursing homes. There were denials about deaths in the homes etc. Can Ms Grogan tell us something, if possible, about HIQA’s role in dealing with that? What lessons have been learned and what practices and policies will be put in place to prevent something similar from happening again?

Ms Grogan mentioned safeguarding legislation for the registration and monitoring of designated centres. She also said there is a narrow definition of designated centres, so there needs to be a broader definition. Perhaps she can explain how that can be done and the way it should be approached.

There were poor findings regarding governance and management in several settings. What is the difference between the amount in the public and the private settings? What is the proportion in terms of the places that HIQA looked at and what happened?

Ms Grogan spoke of people in large complexes and otherwise. The city council has a policy of trying to put people into sheltered housing. Many of these people are elderly, have disabilities, mental health issues etc. Is it better they are brought into or left in the community? I have always believed that people are better off dealt with in their community. What is Ms Grogan’s opinion on the policy where there will be a financial contribution and people will move into sheltered housing? It is a contradiction. It is said that these large complexes do not give us the best outcomes and that trying to keep people in their communities, in their home or where they have been brought up, with their family surrounding them etc. is the right way to deal with people. Can she elaborate on some of those issues?

Ms Carol Grogan

Covid-19 was hugely distressing for residents and their families. The same as many people in society, residents experienced huge restrictions on their freedoms, which directly impacted on their rights because they were not able to avail of day services, those who had jobs were not able to go out and continue to work and they could not visit their families. Like in many other areas, where visiting was permitted, it was window visiting or areas such as that. It was hugely impactful.

Over 2021, we have seen that in some cases, there was a slower return for some residents to be able to regain those freedoms and in other cases they were very much supported. We also saw that some residents found positives as a result of being at home more and developed new personal goals for themselves, such as learning how to cook or undertaking different tasks in the house and feeling very much part of their own home.

On lessons to be learned in respect of Covid, as we highlighted, remote oversight does not work. That is very much evidenced in the declining level of compliance in relation to governance and management. As we outlined, that directly impacts on other regulations, such as premises, rights, privacy – especially in congregated settings – the quality and safety of care and risk management and approaches.

It is hugely important to bring in safeguarding legislation, not just for those living in designated centres but for any vulnerable adult. HIQA has advocated for the introduction of safeguarding legislation that can work alongside the Health Act and the regulations and can work alongside the Assisted Decision-Making (Capacity) Act that is shortly due to be commenced.

On the issue of designated centres and the definition, in the current Health Act the definition of a designated centre is the premises at which care or support is delivered. In the papers that we produced in 2017 and again in the paper on regulatory reform in 2021, we are looking for a reform of that definition to include the service that is being provided to the person and not just looking at the premises in which the service is being delivered. That way, the provider for the service could be regulated. That would allow for innovation in terms of the types of centres and allow for the changing pace and ever-evolving social care. The needs of people with disability are different now than they were years ago and that will change into the future.

We do not currently regulate sheltered housing. Where we are looking at transitioning from congregated settings, for the most part that is into a new designated centre, that is, a centre that is registered by us. We will come out and inspect that centre before a person moves into it to ensure that it is appropriate. As I said, in some cases, some residents are supported to perhaps live independently with home support. However, the vast majority of people move into a smaller, community-based designated centre where they can live as part of the community and go out to the cinema, go to the pub, go for dinner and do the normal things that everybody else does. For the most part, in a congregated setting, they do not get as many opportunities to do those things. Residents reported through the forum that in congregated settings they had fewer opportunities to go out and be part of the community, whereas in community settings that was much more freely available to them.

On the public and private division, most designated centres are funded through section 38 or section 39. The HSE is a service provider also. We only have two private providers. In looking at the 2021 figures, we looked at the division between the community and congregated settings. However, after the committee meeting, I can send the Deputy the HSE versus section 38 and section 39 funded services.

Deputy Dessie Ellis

I understand about the sheltered housing, but it is an area of real concern that is not covered by HIQA.

Some people feel comfortable with sheltered housing. However, I have found that a lot of families are pushing people into these places for monetary gain or otherwise. A lot of pressure is put on people so someone needs to monitor this issue in a better way but I understand that HIQA covers care centres and stuff like that.End of Take

Chairman

Some members have mentioned the pandemic. We, as a society, should have learned an awful lot from the pandemic in terms of how to plan for future seismic change or upset in the system. Perhaps this matter is outside of the remit of the HIQA officials but has HIQA a policy or conducted research on the shortcomings experienced during the pandemic and the decisions that had to be taken? The most vulnerable people were the ones who probably suffered the most during the pandemic. All of the residential and day services closed which left people, in some instances, to fend for themselves or in the case of the elderly their family members or others had to care for them. What did HIQA put in it?

Reference has been made to engaging with residents in an effort to understand their concerns. Has HIQA done background research on the views of the next of kin and the families? I ask that because sometimes there is a clash between what is best for residents and what the next of kin or the family perceive to be the best for residents. Has HIQA conducted research or collated information that suggests the challenges and how we can navigate things? The first aim of HIQA's report is to ensure that people in congregated settings or State care get the best possible services. However, we must look at this matter in an holistic manner. Therefore, we must analyse the situation to ensure that the decisions that are made in the future reflect best practice in every way possible.

Deputy Ellis made a point about sheltered housing. In some instances sheltered housing is being developed by small housing associations and voluntary organisations, whose main aim is to get a site for development. They start with great ambition but may not realise the huge, onerous responsibility they have to comply with regulations and everything. Does that situation not pose a challenge whereby this committee should highlight the situation thus ensuring that housing agencies are equipped with the best possible advice on ways to comply with regulations so as to ensure that residents get the best? Can HIQA identify something that we as a committee should consider that will fence that gap or ensure there is an easier path for providing sheltered housing thus ensuring people live the best life that they possible can?

Ms Carol Grogan

We have all said that the pandemic has had a significant impact across the board. However, the impact was amplified for the people who lived in residential services because families could not visit and restrictions meant that residents could not undertake the normal activities of life. We have not conducted any research on the impact from a regulatory point of view but we have looked at the levels of compliance. Our overview report highlights that there was a deterioration in some of the levels of compliance as a direct result of Covid, so that includes premises where maintenance was not maintained or kept up to date or, while understanding the restrictions, questioning what was done to ensure that rights were protected while people still lived in services. We inspected these services during Covid to ensure that residents' rights were being upheld, that there was safe quality care, and we took action where that care and support were not at an appropriate level.

In terms of trying to engage with residents and their families, we very much are of the view that it is the resident and whoever they wish us to speak with. So the resident might want to include their families, friends or an advocate but we also look to see who the provider includes in the decisions with that resident. I think that the capacity legislation that is due to commence shortly will support decision-making and will ensure that the will and preference of residents are respected where the residents do not have the capacity to make those decisions for themselves.

We are currently reviewing our resident questionnaires, which can also be filled by advocates or family members. We are undertaking a complete review of questionnaires, which we will pilot shortly and get feedback from residents to make them more user-friendly, easier to understand and make it easier for residents to give us feedback. All of that is in addition to speaking to residents.

I cannot comment on the sheltered housing issue because it does not fall within our remit. HIQA ensures that all of our tools are available on the web. Our standards are the national standards for people with disability and they are available on the web. While we might monitor against the standards that does not prevent any other service from using the standards as a benchmark to assess their own services. The tools that we use for inspection are available on the web so that providers know exactly how we will inspect them and guidance is available to them to ensure that they comply. The tools etc. are on the web for the centres that we regulate and there is nothing to prevent any other sector from using them as a benchmark.

Chairman

That is something we might look at. Ms Grogan has said that HIQA has not conducted research. Perhaps HIQA should consider conducting research. I suggest that because it appears to me that HIQA has collected a pile of information over the years on which research on the impact of the pandemic could be conducted from the point of view of the public. How difficult would it be to put that information together in a way that it can be understood by lay people and policymakers to ensure that the best possible decisions are made into the future?

Ms Carol Grogan

I said that we have not conducted research from a regulatory perspective. In terms of the research into the impact, our health technology and assessment directorate has done a wealth of research that has supported Government decisions. I can send some of that research to the clerk to the committee after this meeting.

The area is hugely interesting and well worth consideration. I mean the experience of people, especially the experience of people who were in residential service during Covid. As with any research, one must refine the research question, ensure that one answers it and, taking the point made by the Chairman, ensure that the information is understandable when produced.

We have looked at other areas of research. We have an ongoing project that is learning through our notifiable events. We undertook research into restrictive practices in disability centres and the findings were recently published. I will also send that research to the committee after this meeting. We are looking at other areas so that we can learn from the information that we are taking in from services how best we can add to the conversation on disability services.

Chairman

I can see from the monitor that Deputy Cairns has completed asking her question in the Chamber so she is on her way.

The joint committee went into private session at 10.59 a.m. and resumed in public session at 11 a.m.

Deputy Holly Cairns

Unfortunately we know that on average, residents living in congregated settings have a lower quality of life and that is reaffirmed in this report. Regrettably, HIQA inspections have shown poor compliance results, poor quality of life for residents, or impacts on their safety. The findings are even more worrying when we consider the slow rates at which individuals are moved out to community settings. I am deeply concerned at the increased use of private providers for vital health and social care services and at the use of congregated settings as the default situation when the State fails to provide the necessary support. I am continually highlighting as an example that over 1,300 people under 65 years of age are confined to nursing homes. Not only is current policy breaching their rights, but it is harmful to their quality of life and future prospects. It is important to note as well that the report found considerable compliance; instances of good practices; and adults and children who had positive experiences. However, it is the non-compliance and harmful activities which are important for us to focus on.

The report shows that in organisations where there was limited provision for independent choice or self-advocacy, residents were more likely to express dissatisfaction. Inspectors were informed by disabled people that they were not being listened to, or that their rights, privacy and dignity were not being respected. Can the representatives from HIQA elaborate on that point and the impact it has on individuals? Inspectors found in some cases that care providers were not ensuring residents could directly access their own money. This is an extremely worrying finding. Not only is it disrespectful, but it is potentially abusive and illegal behaviour. While there are grey areas surrounding issues of agency, this is black and white. Will the witnesses provide more explanation about these situations and the actions that were taken? Can those providers be compelled to stop those kinds of malpractices? Another worrying finding is that some children did not have a school placement or an individual education plan. A case is cited in which a child was not being provided with their right to education. Again, that is a serious issue bordering on neglect and illegality. What can HIQA do in those circumstances?

A very serious finding is that not everyone was afforded access to national health screening services. This is frankly disgraceful and neglectful and creates a risk of vulnerable people developing serious conditions. Given the significance of that finding, what actions were taken? While the overall provision of assessment and care planning is good, there were cases of individuals not having their full care and support needs adequately assessed. This obviously impacts on their quality of life and risks different forms of regression. Can the representatives outline the recommendations made regarding assessment compliance and the provision of personal planning processes?

Ms Carol Grogan

I thank the Deputy for her questions. Regarding residents having access to their own money, this is a fundamental right. A huge amount of progress has been made since we started regulating in this area. We have seen that some providers have supported residents to be able to control and spend their money as they see fit, while other providers have been slower. It is a key focus of our rights-based approach, no more than any other right we look at such as privacy, the right to one's own space, and the right to live in a safe environment. The right to have control over your own possessions including your money is a key right.

I will talk generally and then comment on the actions we can take in cases when providers are not meeting the required standards. The decision-making capacity legislation will really support residents in this regard across the board in terms of upholding their rights and ensuring a lack of capacity is not presumed - or not presumed on a constant basis - and is continually reviewed. Understanding the will and preference of people has to be understood and taken onboard where there is a lack of capacity. It is essential that legislation is commenced as soon as possible. A key area here is the lack of safeguarding legislation. While there are regulations around safeguarding, they do not go far enough to protect vulnerable adults. The safeguarding legislation will work very nicely alongside the regulations to further safeguard residents with regard to control over their own possessions, their choices and their will and preference.

We have called out certain examples where providers have failed to uphold the correct standard or move beyond the basic requirements, including cases in which a child did not have a school place or residents did not have access to health services. In such cases, we assess the risk and the impact to residents and we require the provider to submit a compliance plan setting out how they will address the issue. In some cases, we direct the provider on the day of the inspection if the impact is sufficiently significant. We call that an urgent compliance plan. If we believe the risk is significant, we set the timeframe by which the provider must comply. We then monitor that and may go back out to inspect or require the provider to submit an update on their progress against those action plans. I will ask Mr. Colfer to give more detail on this. If we find it is a trend of a provider in a number of centres, that provider will be brought in and we will talk to it about the areas cropping up across its services.

As the Deputy quite rightly pointed out, there is a higher prevalence of non-compliance in congregated settings. We have outlined in this report, and in previous reports, the importance of transitioning people to community-based settings. The ethos of care and support has to change in that move to community-based settings. There has to be a different approach to the supports so it is more community-based and more inclusive, and the residents are involved in the decisions. There are examples in the report we published on Tuesday where residents identified providers which have a much more inclusive way of running a service and residents are part and parcel of it, and other providers which are not quite there yet. That will be a focus for us going forward.

Residents' rights, the residents' positive behaviour support and healthcare are all key aspects of every inspection we do and we look across these aspects across the board. None can be looked at in isolation because one regulation will always impact on another. As Ms McShane outlined earlier, non-compliance with premises will have a huge impact on the rights and privacy of residents.

I ask Mr. Colfer to highlight what actions we take at a provider level from a quality improvement perspective but also where providers are not meeting the required standards.

Mr. Finbarr Colfer

First, as referred to earlier on, we found that most services were good services. While that might be a trite term, it reflects and acknowledges that there are many providers that are operating very good services. We may use language like "good standard" but the implication of that is they are actually listening to residents and providing a good service and it is important to recognise that. Regulation provides protection for residents against a cohort of providers and of services and this protection is required.

We call out issues and name them and that is why they are in the report because the providers need to be held to account. We also share that information so that other providers can be aware of risk.

With providers where we have a trend emerging, if across a number of services we have identified that similar issues are arising, and if there is a failure to have shared learning amongst the providers’ centres, we will see that as a governance issue at organisational level. While the regulations require us to look at centre level, we engage with providers at organisational level. In quite a number of situations, therefore, including quite recently, we have brought providers in to meet with us and have told them that we are very concerned about the effectiveness of their own monitoring and surveillance of their centres, where they are not identifying where things go wrong and are not responding themselves.

We do that at board level. We call in the board, or representatives of the board of the organisation. Normally, those board members will bring senior executives with them. In those situations we have used what we call an escalated regulatory programme. We require those providers to review their governance arrangements and the effectiveness of these arrangements across all of their services. We require them to give us an improvement plan within a short period and then require them to implement that over a defined period, which is normally six months. During that six months period, we undertake sampling inspections across a range of their centres to look at how effective their actions are.

Sometimes providers give us an action that looks reasonable but when we go out on the ground, while that action has been implemented, it is only seen at senior levels and is not impacting on the lives of residents and we will challenge providers on that. We will also challenge them to link in with their residents to hear their views as part of that process. At the end of that six months we will then look at the effectiveness of the programme, whether we can find the provider to be fit, and whether their actions have impacted on the quality of the lives of the residents. We have undertaken those programmes with a number of organisations at this point.

Deputy Holly Cairns

Ms Grogan spoke on the financial abuse piece and welcomed the Assisted Decision-Making (Capacity) Act 2015. Everyone said we needed legislation around that. It was very rushed through the Houses here and we were told that there was a timeline that we definitely had to meet. Then it turned out that we did not have to meet that. All of the amendment stages of that Act were rushed and within that legislation now there still remains a provision that I believe is called the functional test of mental capacity. That has been found to discriminate against people with disabilities.

One of the key findings around that was that depending on who carries out the test, there is a different result and it, therefore, should not be used. However, it still will be used under domestic legislation.

In addition to that, Ms Grogan also spoke about the importance of presuming capacity, which was the entire purpose of that legislation. In the codes of practice that goes with this there were not, as far as we can gather as a committee, that much engagement with DPOs on these codes of practice or anything like that. Ultimately, this outlines that, for example, a bank manager could decide that a person does not have capacity. The codes of practice in this way fly in the face of the entire purpose of the legislation. Has she any concerns about that? I am aware that this is not something that HIQA necessarily look into but I am curious to know if there is anything that concerns the authority in this regard.

In a case which Ms Grogan spoke about where she might go somewhere and there is an urgent compliance plan put in place, could she give me an example, please, of a situation that would result in the requirement for such an urgent compliance plan?

Chairman

I thank the Deputy for her questions.

Ms Carol Grogan

On the capacity legislation, it will support, as I said, but will not take away from what we do and where we go in to ensure that residents are consulted with and included. There are many ways of including residents and people who may not have capacity. We will continue through our regulations to ensure this happens. This is about looking at how all of this comes together. If we have safeguarding legislation along with our legislation and, hopefully, potentially, the reform of our legislation with updated regulations in the near future, along with the capacity legislation, it will be about ensuring that it all works together to better support the person, and for that person to be able to articulate their rights and to live their life. One of the quotes that sticks in my head from the report on Tuesday is: “I have the same rights as everybody else.” This is such a strong statement to make and if we keep that at the fore of everything we do, then all the legislation and supports can better support the person.

On urgent actions, it can be a variety of things. If there is insufficient staffing or staff mixes on duty, we may require the provider to bring in additional staff there and then if that is having an impact on the residents. For example, in the case of fire issues, this would arise if a fire exit was blocked. This would also arise if training had not been delivered to staff and if they were not knowledgeable about how to best support residents in the event of an emergency. We would be aware that training cannot be done before we leave but we would want to be given a date as to when that training will be delivered before we left. If the provider had not reviewed governance and management, we might call a meeting with the provider there and then.

Before we leave any inspection we give clear feedback before the report arrives so that we expect providers to start actioning those areas before they get the report because we will have given them this feedback.

These urgent actions then can be for a variety of things and we look very much to what the impact and the risk to the resident or residents are in these cases.

Deputy Holly Cairns

I thank Ms Grogan very much for her reply.

Chairman

I thank Ms McShane, Mr. Colfer and Ms Grogan for the information, for their report and for describing the challenges they meet on a daily basis. I would be grateful if they could share with the committee any of the research or the documentation they have because the more information we have, the stronger the position we will be in to advance the cause of people with disabilities in their communities and that of their families. I also thank the members for their dedication to their job, which is greatly appreciated. I finally thank our team here who keep us all on the straight and narrow and who do a great amount of work in the background to ensure that we are doing our job to the best of our ability.

The joint committee adjourned at 11.17 a.m. until 9.30 a.m. on Thursday, 10 November 2022.