Joint Committee on Health díospóireacht -
Wednesday, 3 May 2017

Regulation of Residential Services for Adults and Children with Disabilities: Discussion

Chairman

The purpose of this meeting is to engage in two separate sessions with the Health Information and Quality Authority, HIQA and the National Federation of Voluntary Bodies on recent reports in the media that some residential centres run by voluntary bodies for people with disabilities are not in compliance with regulations as laid down in the health Acts.

On behalf of the joint committee, I welcome Mr. Phelim Quinn, chief executive officer and his colleagues, Ms Mary Dunnion and Mr. Finbarr Colfer.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable. I advise witnesses that any submission or opening statement they make to the committee may be published on the committee website after the meeting.

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, either by name or in such a way as to make him or her identifiable.

I now call on Mr. Phelim Quinn to make his opening statement.

Mr. Phelim Quinn

Chairperson, members, I wish to thank you for the invitation to address the Joint Committee on Health this afternoon. I am accompanied by my colleagues Mary Dunnion, director of regulation and chief inspector of social services; and Finbarr Colfer, deputy chief inspector of social services.

We were invited to the committee to discuss the regulation of services for adults and children with disabilities. HIQA commenced the regulation of this sector in 2013 and has since carried out thousands of inspections and spoken to tens of thousands of residents, patients and staff. The knowledge and experience gathered through this work means we are well placed to offer some insights into the systemic issues facing our health and social care services.

The Health Act 2007, which established HIQA, sets out the definition of a ‘designated centre’ and provides the basis for the regulation of such centres. The Health Act also established the distinct role of the Office of the Chief Inspector of Social Services, which has a statutory responsibility for monitoring and inspecting designated centres against the national regulations and standards. The post holder is employed by HIQA but is directly accountable to the Oireachtas.

The chief inspector is responsible for the registration of designated centres for people with disabilities. Services are only allowed to operate if they are registered by HIQA. Registration includes inspection activity whereby the standard of care in a service and the levels of compliance with the national regulations are assessed. This process entails speaking to residents and staff, observing care practices and evaluating the fitness of the service provider to deliver the service.

As I mentioned earlier, HIQA commenced regulation of designated centres for people with disabilities in 2013 with a view to all services being registered by 2016. It soon became clear to us that a significant number of disability services were not sufficiently prepared for the introduction of regulation. It was apparent that not all services would achieve registration by 2016 and thus by order of the Minister for Health the deadline was extended to 2018.

At present, there are just over 1,100 designated centres for people with disabilities providing approximately 9,000 beds. Some 26% of these designated centres remain to be registered, 209 of which are governed and provided by non-statutory providers, while 71 centres are run by the HSE.

There are various reasons certain designated centres for people with disabilities fail to achieve the required level of compliance to allow for them to be registered. These include inadequate safeguarding measures, poor governance arrangements, institutionalised and outdated staff practices, inappropriate placement of people and poor physical infrastructure and living environments.

Some of these issues can be resolved by ensuring that the registered provider and managerial staff are competent, by reorganising and or enhancing current resources and by safely transitioning residents from congregated or institutional-style settings. In fact, our inspectors have witnessed substantial improvements in the quality of people’s lives once good management and oversight arrangements have been put in place and when residents have moved into the community. However, the recurring issues of poor governance, inadequate safeguarding measures and institutional staff practices are more difficult to overcome and require courage, strong leadership and a commitment to changing the culture of an organisation.

Notwithstanding these challenges, there is much good work being done. We have seen a gradual improvement over the past few years and most providers have a positive attitude to regulation. As is the experience in nursing homes, I would expect that good providers of disability services will now seek to move beyond basic compliance with the regulations and improve their services to meet the national standards as mandated by the Minister of Health in 2013.

HIQA’s overview report on the regulation of social care and health care services in 2016, published yesterday, highlights ongoing challenges faced in these sectors but also emphasises that many people are receiving a good quality of service. This is reflected in the positive feedback we receive on inspection, in our own inspection reports and in the move towards increased compliance in certain areas. Without a doubt, regulation has improved the lives of people with disabilities living under the care of the State. Deirdre Carroll, former chief executive of Inclusion Ireland, recently pointed out that while some people criticise HIQA’s inspections of residential centres, they have been one of the most important contributors to improvements in services.

In terms of safeguarding, it is quite apparent that some services must take this issue more seriously, particularly by ensuring that Garda vetting is in place for all staff and volunteers. Legislation introduced in 2016 strengthened the requirements for service providers to ensure that their staff members are appropriately vetted. Some services, however, are neglecting to do so and are thereby failing in their legal responsibility to safeguard residents.

HIQA frequently reflects on how we as the State’s health and social care regulator can ensure that services are safer and better for all. Regulation of services provides a level of protection by the obliging of providers to maintain compliance with regulations and standards and through the use of periodic inspection. However, we believe the area of safeguarding needs to be further strengthened through the introduction of legislation. This would enshrine adult safeguarding in law and acknowledge the State’s responsibility to protect those who may be at risk. HIQA strongly supports the Adult Safeguarding Bill that was introduced to the Seanad last month.

In terms of accountability, while providers are ultimately accountable for the quality of the service they provide, funders of services also bear responsibility and must ensure that public funds are spent to the benefit of the people in receipt of care services. The State distributes large sums of money to various organisations in exchange for the provision of services. However, there is often insufficient oversight of how this money is used or the outcomes it achieves. The introduction of an oversight regime in Ireland has the potential to deliver a range of benefits, including better experiences for those using services, improved service planning, greater accountability, better value for money and greater efficiency. HIQA is working collaboratively with the HSE to develop such a framework.

Government policy has directed regulation of services into areas where vulnerable people are in receipt of health and social care services. These include residential services for children, older people and people with a disability. These people are in the care of the State because they are deemed at risk of harm or abuse. During the course of our work, we continue to identify other service types where we believe similar vulnerabilities exist. We cannot ignore the fact that there are many people in Irish society, such as the homeless, prisoners, migrants or asylum seekers in direct provision who have an entitlement to safe care and to be protected from abuse. HIQA does not yet have a legal mandate to engage in these services, yet we firmly believe that all vulnerable people in our society have a right to access high-quality and safe health and social care services. The continued absence of assurance in respect of the rights and needs of these vulnerable groups has the potential to create new hidden populations in our country.

I now wish to take this opportunity to talk to the committee about some of our thinking on the future direction of regulation in social care. To be effective, regulation must respond to people’s needs. It must also adapt to changing circumstances or risk becoming defunct and meaningless. HIQA constantly seeks to improve regulatory practice and explores how care could potentially be regulated into the future. As such, we recently developed a series of discussion papers exploring the regulation of health and social care services. The paper on disability services, which was shared with the committee in advance of today’s meeting, considers the current care and support models for people with disabilities and looks at future potential models of regulation. The paper looks at the current legal definition of a designated centre for people with disabilities in Ireland, as set out in the Health Act. As I stated earlier, this definition relates to the physical location where care and support is provided. It is also based on a model that delivers care and accommodation, primarily in a long-term residential setting.

Increasingly, HIQA inspectors are finding that some emerging models of care, particularly in respect of people with disabilities, do not fall under the definition of a designated centre and are therefore unregulated. One example of this is where people are moved out of a congregated setting to services that have no regulatory oversight. Other examples include home care, sheltered housing, assisted living, convalescence or step-down care and personal assistants. Again, as these services do not come under the definition of a designated centre, they are not subject to regulation. It is important to note that service users in these unregulated sectors may be just as vulnerable as those being cared for in designated centres. They have the same right to high-quality care and as such, there is a need to review and expand regulation to have oversight and provide public assurance on the different models of care and service delivery.

Ireland is behind the curve internationally and must evaluate the current approach to regulation in order to protect and promote the rights of all people assessing health and social care services. The Disability (Miscellaneous Provisions) Bill 2016 must be passed to address the remaining legislative barriers to Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities. Similarly, resources must be made available to allow for the full commencement of the Assisted Decision-Making (Capacity) Act 2015, which will strengthen the rights of vulnerable people to live lives free from abuse.

Today I have provided an overview of designated centres for people with disabilities and have outlined some of the challenges facing the sector. The experience in residential services for people with disabilities is somewhat mixed. While many are receiving a good service and enjoying a good standard of living, a significant number of people are experiencing a quality of life that is well below that which would be expected in modern Ireland. In some cases HIQA has assessed the care being provided as unsafe.

In addition, we need to think about how care for people with disabilities could potentially be regulated in the future. New models of nursing and social care are evolving that are currently not subject to independent regulatory oversight. We must consider what services should be regulated to ensure that the rights of vulnerable people are respected and that they are provided with care that is safe and of the highest quality. This discussion should form part of a broader discussion on how we, as a nation, plan and deliver services to meet the needs of the population.

I thank the committee for inviting us here this afternoon. We are happy to take any questions.

Chairman

I thank Mr. Quinn and call Deputy Murphy O'Mahony.

Deputy Margaret Murphy O'Mahony

I thank the witnesses for giving of their time to attend. What is HIQA's response to the concerns many people have about the policy of decongregating?

All members of the committee have received anguished correspondence from relatives of people who are being moved out of residential care. Many of those who are being moved seem to be very happy where they are and their families are very worried that their relatives may not be able to cope with another situation. They are also concerned about the upheaval involved in the move and that people might find it traumatic and detrimental to their well-being. Many of these individuals have been in residential care for a very long time and some of their family members think they may not be able to cope. We must remember that this has been their home for a very long time. Do the HIQA representatives believe that it might be legitimate for somebody to object to a move from a regulated, congregated setting to another so-called decongregated setting that is not regulated?

Of the 1,100 designated centres for people with disabilities, how many have been inspected? How many have been inspected more than once, with return visits when things have been discovered to be not in compliance? Are there many centres that have not improved on HIQA's second visit? Mr. Quinn said that services are failing to ensure that staff are appropriately vetted. Perhaps the witnesses will provide a percentage. Is it 1% or 10%? Will they give a rough estimate please?

On the issue of an oversight regime for those who spend public money, will HIQA tell the committee what countries are role models in this regard? When is the work on a framework with the HSE expected to be completed?

Senator Colm Burke

I thank Mr. Quinn for his very comprehensive presentation. I have one or two questions. The witness spoke of the 1,100 designated centres. I know that he has given a breakdown of the centres that remain to be registered as 26%. Of the 1,100, is there a breakdown of the number of centres that are not under the management of the HSE and those operated by various voluntary organisations? It would be interesting to see that figure. Mr. Quinn has said that 71 centres that are run by the HSE are not registered. I presume that HIQA has had communications with the HSE and that there is some kind of deadline in place regarding those centres. Will Mr. Quinn also provide an outline of the timeline regarding the 209 centres that are governed by the non-statutory providers.

The second issue I want to raise is a problem I have come up across very recently with a number of people, especially in the Cork area. I received a detailed reply from the Minister about it. I refer to the situation where respite care is not available when a person reaches the age of 18 . One of the reasons given is that facilities that were providing respite care for people over the age of 18 were no longer available as a result of standards not being met in HIQA inspections. When HIQA identified a problem with a facility, it appears that, rather than dealing with it, the service was withdrawn. I am not too sure which centres we are talking about, but this is the argument now given as to why respite care is not available. I have come across situations where parents had the benefit of the respite care for their children up to the age of 18 and then suddenly that care was no longer available. The argument provided by the Department and the HSE was that some facilities did not meet HIQA standards. When facilities do not meet standards, what timescale is provided in order to allow them to reach those standards? Is it three, six or 12 months? Do we need to take into account that if they do not make the standards, there is a risk that the service will be withdrawn completely?

My third point is also on the issue of providing facilities for people with disabilities. There is a huge number of people who attend day care and whose parents are aging. I am very concerned about this and I raised it at an earlier meeting. There is a big concern that adequate facilities will not be available for these people when their parents are no longer able to look after them. Has an analysis been done in this regard? I may be wrong on the figures but it is my understanding that there are 18,000 people currently being cared for by their parents in the home. Many of these people attend day facilities, some do not. We are talking about 18,000 people. Have we any kind of idea, or is there any discussion between HIQA and the HSE, about long-term planning in that whole area? A huge number of those people will require some kind of residential care, be it respite care or long-term residential care, and I wonder where we stand in that regard.

Chairman

Perhaps the witness wishes to respond to those questions before we move on to other members.

Mr. Phelim Quinn

Absolutely. I will then pass over to my colleague, Ms Dunnion, who is the chief inspector of social services. We would have daily contact with a number of the issues raised by the members.

There are two elements that could be banded together. One relates to the individual and population needs assessment, and for future planning for people as they age - as Senator Colm Burke discussed - and as individuals require a different service profile. This also comes into the accountability framework. We perceive that the whole area of needs assessment, planning for services, holding services to account, providing money for services and assessing value for money in the delivery of services falls under a form of commissioning model. I appreciate that commissioning, as it is seen in other jurisdictions, is sometimes perceived very much as a money-saving exercise. There is a clear emphasis on issues such as the expense of services and how they are purchased. HIQA, however, wants to see a model based around individual need and population need. The sort of work that we are beginning to engage in with the HSE revolves around the various populations and service types, but this has not yet been absolutely tied down. One of the groups we are looking at under an accountability framework with the HSE is that which relates to disability services. There is potential to explore, within those discussions with the HSE, what future planning and future service configuration would look like. As well as the provision of long-term residential care, this would also include other models of care that can be provided in a safe, effective and high-quality way. As the HSE is the national procurer of services, it would want to ensure that it is getting value for money within any service or model of delivery.

Deputy Murphy O'Mahony asked about other countries. There are a number of models across Europe. We have invited a former Government Minister from the Basque country, Rafael Bengoa, as a guest lecturer next week. He will talk about this sort of accountability framework in the context of vertical integrated care. In some ways, HIQA is continually trying to look into international circumstances to see how those models would best fit into the Irish context.

I will now hand over to my colleague, Ms Mary Dunnion, who can answer some of the other questions that were raised.

Ms Mary Dunnion

I thank Deputy Murphy O'Mahony and Senator Colm Burke. I will cover some of the points raised and will share answers with my colleague, Mr. Finbarr Colfer.

I shall begin on the policy of decongregation. I totally accept that families can be very concerned about it. I also accept that, in the context of inspecting centres, that these facilities have been home to the people involved for 20, 30 or 40 years.

On the other side, however, we have seen the huge benefits of people transitioning into community services and residents there have told us how much better those services are for them. We support the national policy of transferring people from congregated settings to community settings but we think there is now an opportunity. While decongregation is happening, and it is very positive, it has had some unintended consequences. For example, an elderly person may not be suited to a move to a community. It just might not be the right setting for them. In addition, as Mr. Quinn said, some of these services are unregulated, which is a concern to residents. In this context, we have prepared the discussion paper, which poses the question as to whether the type of model of regulation is the right one for the future. We firmly believe that the policy of regulation should be aligned to social and health care policy, which is not how it is currently structured in the Health Act. To answer Deputy Murphy O'Mahony's question, we believe decongregation is a positive. However, we feel it has some unintended consequences, particularly for very vulnerable people. We propose in our paper that a different model needs to be considered, which looks at different service types for people such as day care services, ambulatory care and residential services. Furthermore, some people in disability services may require nursing home services. There are many different models that need to be considered and now is the time to do so. The policy of decongregation has probably highlighted these issues.

The issue of Garda vetting took us by surprise when we made discoveries in that regard because it was beyond our understanding as to why one would employ someone who did not have Garda vetting. As the committee will be aware, provisions in this regard were enacted in legislation in April 2016. It is not possible for me to quantify the numbers because we found areas on inspection where Garda vetting had not been done. I can happily report now that there has been a sea change in this regard. This happened in 2016 but it is seen in 2017 that people are now making sure that Garda vetting is in place. I assure the committee that when we come across instances of Garda vetting not being in place, we ensure that the staff member is not on the roster to look after vulnerable people until the Garda vetting is in place.

The chief executive officer has talked about the accountability framework. This is very important in the context of services and our job in HIQA is to work to see the quality and safety of services are there. We are only one player in this regard; the chief groups responsible are those that deliver the services. However, I believe as regulators we have a very important part to play in the quality and safety of services. One of the aspects we have seen - we mention it in our paper and have brought it to the attention of other committees - is that where someone purchases a service, be it the HSE or any other body, there should be an arrangement in the contract which ensures that the service being delivered is of a high quality and there should be checks and balances to make sure that is happening. I strongly feel that if those arrangements were in place, we would not be finding some of the issues we are now finding because they are not being monitored. Therefore, we very much welcome the early work the HSE has begun on commissioning, which I see as accountability. I know "commissioning" is sometimes not the greatest descriptor but it is accountability. We in HIQA are very pleased to become involved in that, particularly in service delivery, where public funds are being paid for the care of very vulnerable people.

I will hand over to my colleague to discuss respite care and day care services.

Mr. Finbarr Colfer

I thank members for their questions. One question concerned the number of centres we have inspected to date. Since commencement in November 2013, we have undertaken 2,551 inspections. As of April last year, we had inspected every service and every designated centre, so all centres have had an inspection. The purpose of the inspection is to examine the quality of the service being provided, what it is like for the people who live in those centres to live there and how the governance arrangements for those centres are effecting a good service for people living there.

Regarding the respite service, there is a variety of different respite formats or types of service in existence, including dedicated respite services, dedicated children's respite and dedicated adult respite. Some services alternate their service between children and adults but there is not a consistency across the country in how those services are delivered. I think what Senator Colm Burke was referring to is the fact that there are difficulties surrounding places where there is a resident in a service for most of the week and when a resident is absent, somebody else avails of respite. One difficulty that has come up for us in that regard is that when we talk to residents themselves, when we observe what is happening in those kinds of centres, some of the issues that have come up have concerned the people visiting the centre for short periods. They are in the other person's personal space and there are inadequate measures in many cases regarding the personal property of the people normally resident in the centre. Residents themselves have described situations in which their personal items have been damaged, family photographs have been torn up and other visiting residents have used their personal property. For us, this is not an issue for the person coming to visit the centre, but rather an issue of how that service is managed and how the provider is ensuring that the dignity and privacy of the resident who is there normally are maintained. Residents have mentioned other issues to us. On one inspection, I was told by a resident that when the resident returned from a holiday away, the mattress smelled very foul even though it had clean sheets. There are issues surrounding the sharing of rooms and people entering rooms. If these issues are not being managed correctly, we require providers either to put measures in place to manage them correctly or to consider whether it is an appropriate way of using the person's room.

One question Senator Burke asked concerned how providers are facilitated to address these issues. When we find non-compliance, we identify it very clearly to the provider, usually on the inspection, and follow up with a report afterwards in writing. The provider is offered an opportunity to correct anything we may have got wrong at that point. Where that is an issue, the provider then considers what measures need to be taken and we ask the provider to come back to us and tell us what they will do to take care of both residents and the timeframe within which they will do so. If the situation is critical and risk is involved, we will be more assertive in requesting timeframes. However, if it is not a situation of risk, we ask the providers to tell us what they intend to do and we will then go out afterwards and verify whether that has been effective in dealing with the issues. In many cases, the actions taken by providers are effective but sometimes providers choose to cease the arrangement because they are not satisfied themselves that they can address the issues that are arising from that respite service.

We are very conscious that many people are availing of day care services which are unregulated but also that people have future needs. As our CEO mentioned earlier, our focus is on inspection, whether assessments have been conducted of people's future needs and whether there is planning in place in that regard. Regarding actual delivery on those, we ask the providers how they are engaging with the HSE to secure the future planning for people. At present, however, our inspectors do not have any authority to assess or examine day care services or the needs of people within those services because they fall out of the scheme of regulation.

Mr. Phelim Quinn

Senator Burke asked a question on deadlines and the remaining unregistered services. The relevant numbers are 71 by the HSE and 209 by the voluntary sector. As I said in the opening statement, we have brought in an extension to the registration period until October 2018. Specifically, the deadline for registration of any service is October 2018. However, we are keen to see progress towards registration well in advance of that date in order that we are not approaching an impending crisis at the last minute. Through the whole programme or policy of moving people into community or integrated community-based settings, the idea is that we would anticipate a continued rise in the number of designated centres as larger institutions become depopulated. Over the course of the next 18 months, the numbers will not only be 71 and 209. We expect fresh registration of new services as well.

Ms Mary Dunnion

We are obliged to have made our decision on registration of the remaining designated centres by May 2018.

Senator Colm Burke

I have a question on the breakdown of the 1,100 centres. What percentage related to the HSE? What percentage was non-HSE?

Ms Mary Dunnion

I do not have those figures, but we will get them back by close of business today.

Senator Colm Burke

I appreciate that.

Senator John Dolan

I thank the HIQA team for being present today and for the presentation. Mr. Quinn referred to the knowledge and experience gained through the work and how it meant that HIQA was well placed to offer some insights into the systemic issues facing our health and social care services. Will Mr. Quinn elaborate on that?

I suggest there is a strong emphasis in the work that HIQA does on the care of people. Care is a core component of people being able to lead a decent life, but it is not the beginning and end of their lives, nor should it be. That is a pointer or hint in terms of what I am suggesting.

Mr. Quinn referred to how HIQA commenced the regulation of the designation of centres in 2013 with a view to all services being registered by 2016. Then he referred to how it soon became clear to HIQA that a significant number were not and so on. Where was the decision made that it could be done by 2016? Who made that decision?

Mr. Quinn referred to issues of poor governance, inadequate safeguarding measures, institutional staff practices having to be overcome and the need for courage, strong leadership and a commitment to changing the culture of an organisation. What things might be needed to shift the culture, given some of the points raised about institutional staff practices etc.?

We heard some input from Mr. Colfer about what I would describe as a hot bed system. Someone has a space and someone else is lodging there at times. I have no other way of describing it. I want to take that as an example and relate it to the issue of poor governance. How do I do that? I will refer to the Convention on the Rights of Persons with Disabilities. One of the articles refers in plain English to the right to a home of one's own and to choose with whom one lives. The convention does not go so far as to say that a person can choose who is in bed with him or her or who is in the bed when the person in question is not in the bed. The HIQA representatives know where I am going with this. To what extent does the spirit of the convention inform or become part of the narrative for HIQA in discussions with the service provider?

The HIQA opening statement went on to refer to the importance of the overview report published yesterday. Reference was made to how it highlights ongoing challenges faced in these sectors. The opening statement also emphasised that many people are receiving a good quality of service. The good quality of service relates to their care to a great extent. However, does the service lead to their having something of a dignified life? To what extent does the whole residential package make it difficult for someone to break out and get into life in some way or other?

I note the issue of respite for those over 18 years of age. I note several other points that have recently come to us in this State as evidence. In the past year or so we know that approximately 1,100 people under the age of 65 years are in nursing homes. HIQA representatives go into nursing homes wearing a different hat. What is the HIQA view of encountering people there who have disabilities and are under the age of 65 years? I put it to the HIQA deputation that if there had been a decent battery of services for these people when they were living in the community, the great majority of them would not now be in nursing homes. The members of the HIQA deputation know better than I do that many nursing homes are in sylvan settings rather than where someone can go out onto the high street.

The CSO has told us that poverty rates for disabled people have been shooting up in recent years. Thankfully, they are getting better for the general population. The recent social housing report shows that the figure has gone from fewer than 4,000 people on the social housing waiting list four years ago to a figure shy of 6,000 now. The recent report from the ESRI on employment is relevant as well. These are strong indicators suggesting that things are very wrong in the community.

It is like the fair deal scheme. If there is a statutory provision in one place, it has a tendency to suck resources and drive a bias one way rather than another. I know people and others know of people who had a fair deal application form shoved under their noses. These were young people with families. This happened because it could be resourced. However, what they really needed was to stay with their families, but that was not resourced.

The HIQA deputation referred to how continued absence of assurance in respect of the rights and needs of vulnerable groups had the potential to create new hidden populations in our country. I am keen to pick under that, as it were.

I will finish with one final point, since I am offending the tolerance of the Chairman. A member of the HIQA deputation referred to value for money. What are the three or four key areas of a service that HIQA has to examine to determine whether it is value for money, apart from the obvious cheap and cheerful areas? What else makes up value for money when organisations are providing a public service?

Deputy Bernard J. Durkan

I thank our guests for attending the committee meeting and for their dissertation.

Several points are emerging. The first is the question of de-congregation. I have deep suspicions about decongregation. I have had the same suspicions since the first time I heard the message, because I saw things happening then. Things were conveniently available on the basis that decongregation was an issue in the background.

For example, I can see it in St. Raphael's special school in Celbridge where there was a proposal to decongregate and create a town centre on the location. The more important, appropriate, sensitive and urgent issue was how to cater for the children and young adults with special needs who were dependent on the facilities which were there for many years.

I was a member of the Eastern Health Board when decongregation took place in the mental health services and the major mental hospitals. We were reassured at the time that everything would be all right on the night. It did not happen that way. We see the legacy of that practice to this day. I strongly urge very careful consideration before going too far down that route. Where the congregation was concentrated, there was a tendency to ensure that a well-equipped, competent staff was available at all times. By virtue of the multiplicity of people involved in the provision of the care, there was a greater tendency to achieve higher standards. When the number of people associated with the patient, the child or the resident is reduced, the danger will always be that standards may shift dramatically over a short period. It is not always the case but, human nature being what it is, that is the tendency. That has been proven repeatedly in institutions here, in the UK, across Europe and in other countries. I register my concern in that regard.

I am also concerned for the family members of people with disabilities because they are scared at the moment. The word "decongregation" scares the hell out of them. In many cases, if there are two family members available to cater for the person with the disability or special needs, it is not too bad. If there is only one carer, the burden is wholly on them. If that person happens to be the mother, daughter, aunt or whoever, that person may find himself or herself confined to that situation for most of his or her life. If a woman of 20 takes over care of a child, young adult or whoever, by the age of 40 that woman will have spent half of her life in that business. It can be depressing. It can create a sense of isolation and despair and does so in many situations. All the relevant authorities should concentrate on that.

While men are also affected, women are significantly affected in the sense that they may have had a career of their own which they may have wanted to pursue. The possibility of them getting any assistance towards accommodation, day services or residential care for the dependant during the week while spending weekends at home is very important. The carers do not mind that because it is the respite they look forward to. It is the break in the tedium and the monotony of the burden that has been placed upon them. We do not fully appreciate the extent to which those carers have been committed by forces outside their control to continuing to provide the degree and quality of service they do. They will do it to the death. It is not fair to them. Very often, the danger of allowing that situation to drift is that an aversion to their charge can develop in reaction to the situation in which they have found themselves. That does not happen in most cases but it can happen. Human nature will enlighten us that it can and that the great dedication and love they have for the relative or other dependant may be strained over time.

Others have made the point in regard to when a person is no longer able to care for their relative or provide the quality of services that person has enjoyed. As everybody in the room is aware, there are women who have spent their whole lives lifting a relative in and out of bed, sitting them into a wheelchair, bringing them to day care treatment and then bringing them home for the evening and so on. The carer ends up a physical wreck by virtue of the degree to which she has been called upon to provide services in the home. Everyone requires the patient, be they a dependent child with a disability or otherwise, to be in the home and their own environment as much as possible. However, it does not work well in all situations. It needs to be carefully looked at as a matter of some urgency.

I cannot understand why it would not be possible to get an accelerated form of Garda vetting to ensure those working with vulnerable people are vetted at an earlier stage. Bureaucracy in this country has gone as far as it can. Everything is a waiting list. No matter what one wants to do, there is a waiting list. That is unnecessary. Certain things can happen fairly quickly. Other countries can do it and I cannot understand why it cannot be done here or we do not have the facilities to do it here. Accelerated Garda vetting would not cost money. It is just there and can be done.

Locating vulnerable people in outreach situations for respite or whatever other reason requires the severest form of vetting. In the event of there being a complaint, and we have had situations like this, there should only be one complaint before action is taken. There is no need for any more. There is no need to refer the unfortunate kids back to the same situation or allow them to be sent back to the same situation ever again. If somebody felt it necessary to express their concerns about how a person with special needs was treated in a particular environment, the person with special needs should never be sent back to that environment. We need to do whatever it takes to ensure that is regulated properly. It only requires a stroke of a pen to do it. We do not have to have a report or have a big song and dance about it. It can be done by simply issuing an order.

Chairman

I thank Deputy Durkan. Perhaps Mr. Quinn would like to respond.

Mr. Phelim Quinn

I will very quickly address the last point made by Deputy Durkan. I agree with him in regard to people who have been placed in vulnerable circumstances or circumstances where they may have been subject to abuse or exploitation. For that reason, we have sought to have safeguarding legislation put on a statutory footing. It is at that point that one would have not layers of bureaucracy but rather the power to act. A safeguarding authority would have the power to act without having to go through multiple layers of bureaucracy. Admittedly, due process has to be followed, but to achieve the protection of a vulnerable individual or vulnerable individuals within a particular circumstance, safeguarding legislation would allow for that circumstance to be dealt with.

Senator Dolan asked about the claim in our opening statement that we are well placed to comment on the systemic nature of services. Over the past four years HIQA has identified a number of critical systemic issues, particularly in the area of residential disability services. Some of them are listed. Lack of accountability manifests itself through the regulation and standards framework. The framework is in place to provide a governance framework for providers of services. As Ms Dunnion has said, there has to be some form of linked accountability for those funding services on behalf of the State.

What are the millions provided by State paying for and how is that being monitored?

The other major systemic issue we have identified is safeguarding. While I fully appreciate the points raised by Deputy Durkan about congregated settings, there have been instances where we have seen institutionalised practices within large congregated settings that have placed at risk people who are citizens of this State. We need to be sensitive to the way in which people transition from one service to another and we need to allay the fears of their relatives. We need to work in partnership with their relatives around the transition.

The very heart of the Deputy's point is that it is not all about care, and I agree with him. It is about rights. It is about people who live in the State having their basic human rights met. It is for that reason we have endeavoured to engender human rights principles within our inspection workforce, particularly the principles of privacy, dignity, respect, fairness and autonomy. Once we see the State ratifying the UN Convention on the Rights of People with a Disability, the language of that convention needs to make its way into the interactions we have with service providers and into our reports as well. It is about more than care, but the current construct of designated centres and the way in which services are provided tend to focus on care when we should be talking about integration of people into the community, equality and their ability to be treated fairly like all other citizens. That is where we need to transition to. It is about an assessment of people who may be vulnerable and their being treated as equal citizens. That is where we would ultimately like to go. We also need to see the human rights principles not just coming from the regulator but also transcending through service providers as well.

I will ask my colleagues Ms Mary Dunnion and Mr. Finbarr Colfer to answer some of the other questions.

Ms Mary Dunnion

I thank the members. I will share the questions with Mr. Colfer.

Garda vetting only takes two weeks now, so the system has improved since the Garda vetting bureau was commenced. It would have been quite a long process before these efficiencies were put in place. That is the reason it was of grave concern to us that providers of services were not availing of Garda vetting in certain centres and, more worryingly, did not see the importance aligned to Garda vetting in the context of looking after vulnerable people.

In response to Senator Dolan, the registration cycle is determined by the Health Act which sets out the registration cycle. It requires a ministerial instrument to change that to five years for disability services. Once we achieve the five years in 2018, we revert to three years again because that is what the Health Act determines.

In the discussion paper we have presented, we make the proposal that the registration cycle should be eliminated. It does not mean that we do not inspect to ensure standards are being met, but we do not see the three year cycle as a cost benefit. It is an expensive process. We do not see that it is required and we believe there are different regulatory approaches that can be taken that would drive improvement much more efficiently than renewing registration as an inspection process. That is determined by the Health Act. It is not in the control of HIQA. Our proposal would be that the system would be looked at.

On the issue of institutionalised practices, it would be foolish for me even to suggest that it is an easy thing to address. The institutionalised practices are by those delivering the service and by those living in the service. We have seen centres where it has been addressed. The two key catalysts for change were that it was led by example in that the person in charge did not accept and did not concur with that type of practice, and that the person in charge had the courage to address poor behaviour in staff. While the two examples sound simple, I would not underestimate what it takes, and we would have the evidence in our inspections to support leading by example, good management, good governance, taking ownership of being in charge and the accountability that is assigned to it, showing what behaviours are not acceptable, and over time bringing about change. I am confident that we would have very good examples of centres that have reached compliance, where the staff have taken the ball and gone with it and changed the system for very vulnerable people. It was a good example of how regulation contributed to that change.

We regulate more than 600 nursing homes. I agree there is a model of care in nursing homes which is determined by the regulations which are set out by Government and we measure compliance against that standard. It is a very limiting model. I do not think it will be able to respond to the cares of ageing people with disabilities who will need more medical and nursing care than social care services. Members will be worn out from me talking about the HIQA paper, but I believe there is an opportunity to look at the model of regulation that Ireland is offering now. I do not believe the regulation of a facility and care within a building is a model that is in keeping with social direction and care policy.

We would hope that this paper would become a discussion document to begin to work towards. Regulation as a model is not suited to the emerging needs or indeed national policy of people being maintained at home and staying in their own home and being cared for by family and other carers. There is an opportunity to look at that. It will require a change in primary legislation and we hope that this would be considered by the Oireachtas in its consideration of the future of health care.

I can only agree with the points made by Deputy Durkan. We would concur completely. It is a very difficult situation and it is a major challenge for people emotionally, financially and socially to look after their family and carers at home.

The reason we think the overview report is important is that it gives a lens of health care, older person's disability and children's disability. While our lens does not cover all services, it shows there is an opportunity to integrate these services more. We can see the integration is not there and there are opportunities for it. That is why I believe it is a good lens, although we accept we are not looking at everything, just the areas that we have mentioned. I could not but agree with Deputy Durkan and I hope that, in future, health and social policy will begin to reflect the concerns he identified. HIQA personnel would be more than delighted to be part of that direction because it is essential.

I will hand over to my colleague, Mr. Finbarr Colfer, on the issue from the viewpoint of human rights and how, from an assessment approach, we look at them currently, accepting that legislative changes are required.

Mr. Finbarr Colfer

I will start by addressing one of Senator Dolan's questions. It certainly rang true and it has been part of the discussions I have been engaged in of late, that is, looking at whether focusing on residential services stymies a person's opportunity to develop a full life. The provider community recognises that increasingly and we are certainly having discussions with providers who are coming up with quite innovative approaches and proposals to meet the needs of people as opposed to placing them in the traditional residential service. The concerns are about the current requirements around regulation. Some providers are very cautious about having services outside of regulation because they are concerned that people will not have the protection of regulation. Some of the innovative services are being developed as residential services. Other providers are anxious because they are worried they are moving people out of the regulatory process and the protections that affords people.

That goes back to the paper we submitted, looking at services as opposed to buildings, and what is happening within buildings. I am sure the providers will be able to talk further about that themselves when they appear before the committee.

As regards Deputy Durkan's comments, having engaged with families both prior to and in my current role, I completely understand the point about family anxieties arising from moving people from congregated settings. There is a concern that people will no longer receive adequate care and support and will not have access if they move into a smaller setting. There is a challenge to services, as they are provided in the community, to ensure that arrangements are in place for people to receive services based on their assessed needs.

While I acknowledge the concerns of families and those who are moving out of those services, the other aspect is that in the vast majority of congregated settings we have inspected we have found startling issues including the safeguarding of residents, their quality of life, and ongoing institutionalised practices that are based on organisational needs as opposed to the needs of people in those services.

We have also had to require providers to take immediate measures to keep people safe in historically accepted situations whereby residents cause injury to other residents, which are not responded to appropriately. Some of the more significant findings we have made in the last three to four years have been in congregated settings.

Our discussions with providers and the HSE have increasingly been about acknowledging the concerns of people who are proposed to be moved to other services, as well as the concerns of families. That process needs to happen in a managed way that engages with people and involves them in the process. We have seen good examples of where that has happened, but we have also seen poor examples where that engagement has not been effective and it has caused further anxiety to families.

As regards people's rights, Senator Dolan referred to respite and the examples I gave. Currently our discussions are based on requirements in the regulations and reaching compliance with them. The provider is required to demonstrate a high level of evidence that it is looking after the needs of people.

The Senator is correct to say that it does not assert the rights of people in their own home. We have discussions with providers on that, but we do not currently have a regulation we can enforce. However, the introduction of those measures will allow us to ratify the UN convention, along with a review of regulations in that light. It would certainly be helpful to inspectors in that review of regulations if those rights were to be asserted more clearly in our regulatory requirements. That is for discussion as we move forward. Meanwhile, we are focusing on issues like dignity, respect and how the person is supported in that environment to live a good quality of life.

Deputy Bernard J. Durkan

Have there been any issues that have caused concern in congregated settings, given that there is a fairly large-scale dispersal throughout the community?

Mr. Phelim Quinn

We have certainly found issues of non-compliance in smaller community-based settings, as well as in larger congregated settings. That would be the experience of health regulators even in other jurisdictions. I agreed with Deputy Durkan that, at times, the nature of the vulnerability changes from the larger institution to a smaller one. However, it is a question of trying to ensure that the focus is not necessarily always on the care or support, but on the rights of individuals living within those services.

The current assessment regime is based on current regulations, which sometimes do not always match our desire to ensure that the rights of individuals are being met. The Deputy is right in that there can be instances where there are non-compliance issues in smaller settings as well.

The Deputy also raised the issue of carers, which can be forgotten. In the work we are proposing to do with the HSE in assessment and accountability frameworks, carers' assessment probably needs to be front and centre. The needs of an individual have to be at the centre of what those assessment and accountability arrangements will provide. Part of that package, however, has to be about a carer assessment and the ability of a service commissioner to take account of the needs of informal carers.

Chairman

Senator Dolan referred to value for money and how it is judged. I came across a case recently where a child reached 18 years of age and the cost of providing two weekends of respite per year came to €154,000, which seemed an extraordinary amount of money for just one client. Therefore, is there a system of assessing value for money?

Mr. Phelim Quinn

Our engagement or involvement in any discussion on value for money will be part and parcel of any work we propose to do under the accountability framework with the HSE. There would be no requirement under the current legislative or regulatory framework for us to look at value for money issues. Primarily, however, in looking at value for money one of the critical issues is whether or not the service being provided is addressing the client or client group's needs.

We must also look at whether or not the service is achieving the outcomes it was purchased to achieve. In addition, we must examine the balance of costs and whether or not there is some comparator cost that can be used within that model.

Senator John Dolan

I thank the witnesses for the strong support they have expressed here for the Adult Safeguarding Bill that was brought into existence by Senator Kelleher. Significant parts of the Disability Act 2005 are not in operation. They concern looking at a range of services and supports that people need. The advocacy side of it, in the Citizens Information Act 2007, has not been triggered. It is important for us to remember that the passing of legislation, as distinct from its full enactment, is an issue.

Mr. Phelim Quinn

Added to that is the assisted decision-making capacity legislation.

Senator John Dolan

Yes.

Mr. Phelim Quinn

I am currently working with the National Disability Association around new codes. In looking at the roles of people under that legislation, it is quite obvious that if it was properly enacted it would come some way towards addressing the needs and preferences of people with a limited or compromised capacity. I agree with Senator Dolan.

Chairman

On behalf of the committee, I thank Mr. Quinn, Ms Dunnion and Mr. Colfer for coming in at relatively short notice. I thank them very much for their expertise. We may be meeting them again.

Sitting suspended at 3.30 p.m. and resumed at 3.34 p.m.

Chairman

On behalf of the committee, I welcome Mr. Brian O'Donnell and Mr. Bernard O'Regan of the National Federation of Voluntary Bodies who are with us in respect of recent reports in the media that some residential centres for people with disabilities run by voluntary bodies are not in compliance with the regulations as laid down in the Health Acts.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable. I advise witnesses that any submission or opening statement they make to the committee may be published on the committee website after the meeting.

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, either by name or in such a way as to make him or her identifiable. I invite Mr. Brian O'Donnell to make his opening statement.

Mr. Brian O'Donnell

I thank the Chairman. The National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability welcomes this opportunity to meet with the committee today and wishes to be of assistance to the committee in any way that we can in consideration of this very important matter. The reason for the invitation is to allow us to respond to recent media reports about organisations that run residential facilities for people with disabilities that are not in compliance with the regulations in accordance with the Health Act 2007. However, at the outset it is important for me to point out that the member organisations of the federation are incorporated companies limited by guarantee with their own independent boards of directors, chairs, CEOs and management teams and, as such, we are not legally authorised to speak on their behalf. The specific details of cases and reasons for non-compliance in any instance would not be known to us but any questions the committee has relating to the reports can either be addressed directly to the organisations themselves or I will be happy to address them with the organisations concerned.

I wish to inform the committee of the actions we as a national federation have taken to promote equality standards in our member organisations. To provide a little bit of background, our federation is the national umbrella organisation for voluntary agencies that provide in excess of 85% of this country's direct support services to people with intellectual disability and autism. These support services are provided on a service arrangement basis under sections 38 and 39 of the Health Act 2004 on behalf of the HSE, which has statutory provision for the provision of services, and include the provision of education and training opportunities, therapeutic supports and residential, respite and day services.

Our mission is to provide the leadership and support that will enable voluntary organisations to adapt to a radically changing operating environment with the ultimate aim of ensuring that the people whom our member organisations support benefit from best quality service according to their needs. In pursuing our mission we adopt the guiding principles that people with an intellectual disability have the right to be supported, to live a life of their choosing and to be included in all decisions that affect their lives.

Considerable work has been undertaken by the national federation in recent years aimed at supporting policy and legislative development and the continued reconfiguration and development of services that seek to embrace the principles of person centredness, access, accountability and quality. This work has included the organisation of conferences, seminars, shared learning events, high quality training programmes and important project work.

I will mention two conferences in particular, the first of which was the Immersion event, which was a landmark one for the federation. Its title was Immersion Transformation Programme - Towards a Good Life. It was a five-day immersive learning event, which was organised by the federation in April 2013. The event focused on providing leadership and practical support in the implementation of the new national disability policy developments. Critically, Immersion was led by international experts who provided an in-depth introduction to important themes in the area of supported self-directed living to more than 300 attendees, including staff from our member organisations, statutory providers, families and people with intellectual disabilities themselves. It was a truly landmark event and there was huge learning out of it in terms of providing leadership and practical support in the implementation of national disability policy.

The federation, in collaboration with an organisation called Genio, has developed a four-week training programme called Enabling Excellence on the key components of social role valorisation theory. The programme was provided to staff members from 30 of our member organisations along with staff from a range of other service providers, including statutory providers.

I wish to make reference to a major project we have under way called the Next Steps project. The purpose is to support our member organisations as they progress with the development of individualised supports for people who use our services. The overall aim of the work is to ensure that people with intellectual disabilities are supported to live a life of their choosing. In all, we have 25 member organisations participating in the project. Effectively, it is a community of learning. We take a case study approach to share learning in the development of individualised supports.

The National Standards for Residential Services for Children and Adults with Disabilities document was published in January 2013 by HIQA. In preparation for the introduction of the regulations in November 2013, the federation supported its members in a number of ways. Primarily, the support was around information sharing, which is critical. Since the introduction of the regulations there has been ongoing inter-agency sharing of information and experience leading to problem resolution throughout the services. For example, there could be information sharing where the regulator has identified a deficiency in some policy in respect of some aspect of care in one organisation. We facilitate cross-sharing with other organisations with robust policies that have passed the test. This is an ongoing process. As one might expect in a federation such as ours, we facilitate information sharing in terms of policy but we also facilitate study visits for organisations in respect of which compliance remains a challenge to organisations that are fully compliant.

The role of our quality and standards sub-committee has been expanded to include a central focus on the implementation of the regulations. Our submission goes into some detail on the matter. As a national federation of service providers, we have been in the vanguard of promoting quality for many decades, as one might expect. Our quality committee carried out major international research during the 1990s. This culminated in the publication of a report that was effectively a critique of seven different quality systems applying globally in services for people with intellectual disability. The report was published by the quality committee and made available to organisations embarking on achieving accreditation in quality. We have kept the committee in place. Earlier, I pointed out that the brief was expanded in 2012 to include a central focus on the implementation of the regulations.

The federation has a strategic plan covering the period 2016-19. One of the strategic priorities identified in the plan is a commitment to continuous quality improvement and innovation. A range of actions are identified in the plan aimed at achieving this strategic priority. The federation website is www.fedvol.ie. A resource point was developed by us to facilitate the sharing of HIQA-related policies and documentation and is accessible on the website.

We are represented on the HIQA provider forum. We have ongoing engagement with HIQA. As the regulatory process took hold and began to progress, issues began to emerge around the regulatory process that we, as providers, brought to the attention of HIQA. It was agreed between us that there would be merit in establishing a forum. In fairness to HIQA, it has been responsive to providers. The forum was established to facilitate direct communication between the authority and representative organisations of service providers with regard to issues pertaining to the regulatory framework for services to people with disabilities. The forum meets on a quarterly basis. It provides an opportunity to raise issues relating to the overall HIQA registration and inspection process as well as agree actions on how these issues can best be addressed.

We have contributed to the review of the implementation of the regulations and inspections of residential services for people with disabilities carried out by the National Disability Authority in 2015. More recently, we participated in a discussion on the regulation of designated centres hosted by HIQA. I will say more about that later. Specifically, the NDA review confirmed that of the 18 outcomes HIQA inspect against, approximately two thirds of outcomes were found to be compliant or substantially compliant. The NDA review focused on 192 HIQA reports that were selected for detailed analysis. This sample covered the first year of regulation. An earlier contribution by HIQA representatives referred to the fact that of the 1,100 designated centres requiring registration at the date of commencement of the regulations on 1 November 2013, only 200 remain to be registered today. This points to progress on the issue.

Engagement with the people with intellectual disabilities who we support is vital. They should be foremost in our thoughts in all of these discussions. We are mindful of the need to ensure that the perspective of these people is understood. As a result, we established a video booth at a self-advocate conference run by the Brothers of Charity Services Ireland, one of our member organisations. The conference was attended by over 300 people. We offered the attendees the opportunity to tell us what they want to say about HIQA. This resulted in the development of a DVD, which I included in the briefing pack for committee members. We had the opportunity to present this work to HIQA senior management. It was gratifying to see the way the content of the video was noted by HIQA management. Significant learning is to be gained from such study. Earlier, Mr. Quinn from HIQA alluded to the fact that it is HIQA practice to consult and liaise with people who are supported. We advocate a more systemic or systematic engagement with people who are supported because they have informative things to tell us.

It is fair to say that the commencement of the inspection and regulation process has posed considerable challenges for service providers. Organisations have welcomed the introduction of standards and the establishment of HIQA to oversee the registration and inspection process. However, the detailed requirements of the regulations and the pace of change have forced organisations to respond and adapt within a relatively short timeframe. While progress is being made, it will take more time for all organisations to be fully compliant with the regulations. This was adverted to in earlier contributions.

The federation has no doubt that the absence of a pre-regulatory impact assessment was a major deficit. Such an assessment would have established the state of readiness of service providers as well as the resource implications for the sector. It meant that service providers have to meet the significant regulatory requirements without adequate resourcing. The costs associated with registration and home adaptations, including upgrades, fire equipment, protection measures and staffing, are immense, surprisingly. Total compliance costs for our member organisations for the period 2015 and 2016 amounted to €43 million, of which €17 million had been provided to agencies by the HSE. This left a shortfall of €26 million.

I will outline the overall impact to date. In the main, the introduction of the regulations in November 2013 has had a positive impact on the lives of children and adults living in residential services and designated centres.

The process of external inspection is powerful and the introduction of the statutory regulations has made services more accountable and identified areas of poor practice that services need to address as a matter of priority. There is also an increased focus on residents' rights, equity, how complaints are addressed and treating people with dignity and respect, all of which enhance individuals' overall quality of life.

Chairman

I thank Mr. O'Donnell. He referred to a shortfall of €26 million. What does it comprise and how is it funded?

Mr. Brian O'Donnell

It is primarily capital costs, but there are also staffing requirements if there is to be compliance with the regulations. For example, it covers fire protection measures and adaptations to residential facilities to make them more user friendly or habitable.

Chairman

The €26 million comes from the organisations themselves.

Mr. Brian O'Donnell

It has to be found within them.

Mr. Bernard O'Regan

Some organisations are running deficits to ensure that they provide safe services. They have taken measures for which they may or may not have adequate funding, but they have had to act. They continue to engage with the HSE to try to secure funding to address deficits. This contributes to the financial pressures on some organisations. Others are engaging in a mix of fund-raising and so on to address the issue.

Chairman

Much of it must come from their own resources.

Mr. Bernard O'Regan

Yes.

Mr. Brian O'Donnell

That has an impact on other aspects of service that are desirable and much needed.

Chairman

Reaching the standards must put them under pressure if they have to find that funding.

Mr. Brian O'Donnell

Yes. That is fair to say.

Chairman

I thank the witnesses. Some of our members will now address questions to them.

Deputy Margaret Murphy O'Mahony

I welcome the gentlemen and thank them for attending. What is their response to many people's concern about the policy of decongregating? Most members have received correspondence from people whose relatives are being moved out of residential care. They are concerned about how their relatives will cope in new settings when their previous settings have been their homes for much of their lives. Is this a common occurrence and do the witnesses support the policy?

The witnesses mentioned the €17 million of the €43 million that had to be provided by the HSE, leaving a shortfall of €26 million, but could they be more specific? Have voluntary bodies had to reduce services because of this shortfall and have many designated centres been closed as a result of non-compliance?

Senator Colm Burke

I thank the witnesses for their presentation. I asked HIQA a question about the 1,100 designated centres. Of the approximately 9,000 beds, what percentage is provided by the voluntary sector? Have we any idea of that figure? HIQA stated that it would revert to us, but the witnesses have a fair idea on the matter.

My second question is also one that I asked of HIQA. Many of the witnesses' organisations, a number of which are large, also provide day care facilities. Have those organisations undertaken an analysis of whether their types of day care service will have to change in the coming years if, for example, there is inadequate family support - an attendee's parents might be ageing - in the next ten, five or fewer years? What problems are we likely to face? I have in mind COPE in Cork, where approximately 1,500 people attend its day care services. I imagine that it will face major challenges in this regard.

The witnesses mentioned how the HIQA forum had been useful, but could more be done to help the federation's members work in a timely manner? Is there co-ordination between HIQA, the federation and the funding organisation, namely, the HSE? Are we running into problems? On the one hand, voluntary bodies are coming under pressure from HIQA to reach a certain standard and, on the other, the HSE does not seem to recognise that. Does that vary between different parts of the country? Is it an issue that must be taken to national level to be addressed? What progress can be made? Can this committee be of help if there is an area of the country where the necessary supports are not being provided by the HSE?

I also mentioned the issue of respite care. HIQA raised some concerns about, for instance, respite care being provided at weekends in facilities that were occupied for the full week by people who were permanent residents but were able to go home at weekends. Respite care is a major issue, but less of it seems to be available now than at any other time. Are the various organisations involved being worked with to try to improve this situation?

Chairman

The witnesses might like to address some of those questions.

Mr. Brian O'Donnell

Both of us might do so. The HIQA forum is a welcome development, but Senator Burke is right. He did not use the expression, but we often find that member organisations – the service providers – are the meat in the middle of the sandwich. HIQA gets on with what it must do, namely, inspecting and reporting on compliance or non-compliance. I would not go so far as to say that it is not concerned about the requisite resourcing, but that is not its business. Rather, its business is to inspect and report. The issue of resourcing is a matter on which the service providers must engage with the HSE. As the figures indicate, we have had limited success in that engagement. It remains a major issue for us. Anything that the committee could do to assist in that regard would be welcome, given the impact on other services. As Mr. O'Regan mentioned, in order to ensure compliance, significant costs are incurred that create deficits in other parts of the organisations, which undoubtedly impacts on their ability to respond to all identified needs.

Regarding the 1,100 designated centres, those probably include statutory providers and providers of services to people with physical disabilities in residential care. We do not represent those organisations, rather, voluntary organisations providing services to people with intellectual disabilities and autism. To answer the Senator's question directly, I do not know how many beds in the 1,100 designated centres relate to us.

I note that the chief inspector agreed to provide that information and we would be very interested in it.

The subject of day care facilities and changing need is a huge issue for future services planning and one that we highlight all the time. Working in collaboration with Senator Dolan's organisation, the Disability Federation of Ireland, it is an issue that we raise constantly with the HSE as the statutory organisation. There needs to be planning around this because there is no doubt that it is a ticking time bomb. As Senator Colm Burke rightly says, carers and parents are growing older and in some cases are acquiring health issues and disabilities themselves. Their ability to continue to respond is compromised. We raise this issue at every opportunity we get.

The value for money and disability policy review is now called the Transforming Lives programme. It is progressing with its work through a series of working groups. The first working group, of which I am a member, is tasked with forecasting future demand for disability services. It is a work in progress at the moment but the topic is getting a lot of attention in respect of changing needs, carers getting older and the carers' concern of "Who will be there when I am gone?"

Mr. Bernard O'Regan

I would like to add to Mr. O'Donnell's comments. Some of the pressure on services at present is coming on the back of years of cutbacks. While there has been investment in service developments in recent years, it has come on the back of years when the investment in services had reduced significantly. As the investment in services is happening now, it must also retrospectively deal with the cuts in services that had happened over those years, the consequences of those cuts and the impact they had on families. We are seeing extensive evidence and experience of families who have survived, and I use the word advisedly, through those very difficult years and who are now finding it extremely hard. The pace of investment over the next few years will need to be significant to catch up and start meeting the need.

Reference was made to decongregation and congregated settings. The position of the national federation is to endorse the national policy. We were part of the development of that policy and contributed to it. As the representatives from HIQA said earlier, there is much evidence that those models of service were developed when that was the best that was known but we now know different. We have different models of service that we can and should be providing for people. That area also requires investment and, as the HIQA representatives said, it cannot just be done overnight. We are talking about people's lives and about places that have been their homes for decades. Any consideration of what a different service or support arrangement might look like must be based on each person, their assessed needs and how it might be best designed. The transition from where people are currently living to any new arrangement must be as carefully thought out as is the outcome for people at the end of the process.

I have no data on reduction in services but I have no doubt there has been some experience of organisations not expanding their services because they have had to raise the standards of the services they provide or that may have been obliged to curtail what they do in some way. There are examples of providers deciding not to continue with a service because the costs of getting it to the standard where it complies with regulations may have been prohibitive and they may have had to look at alternatives. That has not always been a bad thing; it has sometimes created opportunities for innovation in developing different models of service or exploring what different models might look like. It is not always a negative thing. It has also created some opportunities around it.

Senator Dolan referred earlier to "hot-bedding" and with respite and the use of people's beds, it certainly is an issue that has raised some difficulties. It goes back to a fundamental issue about what we believe home looks like. I live in my family home but I am here in Dublin tonight because I have meetings today and tomorrow. While the prospect that somebody might use my bed in my absence as a respite bed has a certain economic benefit, it presents huge issues around what is my private space, my sense of home and so on. The challenge for providers is to maintain good quality and adequate levels of respite service but in a way that safeguards the interests of people using respite and the interests of people whose home it is. The challenge can be seen in some instances where it has not been possible for a provider to figure out a solution to that; they have had to make a decision about whether a bed is a respite bed or a residential bed. I am aware, for example, that in a number of services there is a respite bed in a residential home and the provider has sought to dedicate a bedroom that is only used for respite and is not a person's bedroom. They try to ensure there is only a small number, maybe three or four people, using that bed for respite so the people who live in the facility do not experience 20 different people coming in and out of their home in the space of a month. It is a case of trying to find the best solution against a difficult backdrop of limited resources and of trying to meet a range of needs within those services, as well as complying with regulations and what is set out there.

Mr. Brian O'Donnell

A recent distressing and depressing development is a situation, which has been reported to me in at least two services that I know of, in which families are desperately waiting for a residential placement for a son or daughter, brother or sister. An opportunity comes up for a respite break and they use the respite break but are then not in a position to accept the son, daughter, brother or sister back into the home. He or she is pretty well left in the care of the service provider. This is probably an indication of the desperation felt by some people and it goes to the heart of the concerns raised by the Senator.

Mr. Bernard O'Regan

With regard to the timely engagement of the different stakeholders, the service providers, the regulators and the HSE in responding to needs, undoubtedly the impact of regulation has been quite significant on services over recent years and Mr. O'Donnell has alluded to this already. Another reality is that the HSE has itself been going through quite a significant restructuring and redesign. Part of that has been the development of some new structures at local level to try to bring together the service providers and the HSE. This is at the very early stages and some of those committees are only having their first meetings now. It could certainly be hoped that this might provide a structure for timely and effective planning and responding to the issues that arise. If there is an inspection by HIQA of a service that points to significant issues - such as the examples given by Mr. O'Donnell where a building upgrade might be required at significant cost - sometimes the only way this could be addressed is through a collaborative approach with the HSE. There must be mechanisms to be able to engage with the HSE to try to prioritise that work within the limits of the budgets available to the executive.

I hope that some of the committees and structures that are forming will help to grow the kind of speedy interaction to which the Senator referred.

Senator John Dolan

I appreciate the presentation and the work the National Federation of Voluntary Bodies has put into it. It is important to emphasise that very last paragraph which states that in the main, regulation has had a positive impact on lives and that external inspection is powerful, brings more accountability, picks up on poor practice and shines a light on issues around dignity, respect, equity and such like.

Having said that, I have a few questions that arise from the earlier session. I will ask for some comments on them and then if we have the time I have a couple of other questions for observations. I think it was Mr. Finbarr Colfer that said the provider community is increasingly recognising that it is better not to focus only on the residential. Currently, protections are around buildings and places. Mr. O'Regan talked about the different models of services we now have. I think they connect in some way and I would like a comment on that. Ms Dunnion talked about the importance of cultural change from the top down. Does that resonate with the witnesses or do they have any other comments? The other point is on governance and is similar to one I raised earlier. To what extent does an appreciation of what the Convention on the Rights of Persons with Disabilities is about act as a driver in respect of governance orientation in organisations? Could it be a stronger driver in that regard? Ms Dunnion also spoke about things that might usefully change or develop in the regulations. What progress or alterations of the regulations would the witnesses like to see, given the experience of this first round?

To change course slightly, is there anything mitigating, preventing or making it difficult for younger people to stay out of institutions or congregated settings of one kind or another? How has the profile of people in services or coming into services changed over the decades? What impact is that having? Mr. O'Regan talked about the pressure as a result of cuts. It think he used the phrase families who have survived over those difficult years. Is there a question there? What is his sense about the sustainability of what is going on? My final comment was spurred by Mr. O'Regan. I think I heard him speak a number of years ago about moving from the notion of service provision to being of service to people. Is that relevant here or does Mr. O'Regan have any comment on that?

Deputy Bernard J. Durkan

I just have a quick question. To what extent has Mr. O'Regan observed any changes in volunteerism and the availability of volunteers in recent years? From what kind of background do the volunteers who are available or who make themselves available come? Do they come with a knowledge of the subject matter to which they are about to relate, or do they come with no knowledge?

Mr. Bernard O'Regan

I am not quite sure where to begin. I did not expect Senator Dolan to quote something I said years ago.

Senator John Dolan

My memory is great. It is a compliment to Mr. O'Regan.

Mr. Bernard O'Regan

I thank the Senator. I will try to deal with these questions as best I can. Sustainability for families is a real concern. In other situations I have used the word "crisis". I have tried to be careful in the use of that word because it can be overused, but I would not underestimate the stress and demands on families and on their family member with a disability in light of inadequate services.

In some way that links to the question about the future regarding children and keeping people out of those service models we are trying, in some respects, to move beyond. Where families are in crisis and where we are not meeting their needs at the point where the need first emerges, that level of need escalates. When it escalates, we then tend to provide the solutions that we know. The better thing to do would be to try to engage with families at an earlier stage and try to figure out solutions that are innovative and responsive to their needs, but which are not necessarily the conventional answer or the conventional model of service. The more we can get back to that grounding, the more we can keep a focus on young people as children and as teenagers who want to be part of their community with supports. We can focus on engaging and connecting them to their communities and helping them to develop relationships and supports within their communities, so that a reliance on services is diminished. We can focus on reducing reliance on the conventional model, where when one needs a place to live, one goes to a group home. Instead one should be supported to find a home that is designed around one's needs and preferences and which is shared with the people with which one wants to share it. Where people need support, those supports should be organised in a way that makes sense for them. The regulatory framework should be designed in such a way that it can assure the public and the State about the quality of those supports and not just about the brick walls within which people live.

The comment on whether we are service providers or of service is critical. It goes to the nature of what the future will be. It has to be part of our ongoing dialogue. Traditionally, services and service providers have found themselves almost trying to be all things to all people. I do not think anybody or any organisation can do that. We must ensure that the person who is being supported is the reason we all exist as service providers in the first instance, and that in carrying out and providing those services we are there in service to the person who needs some support. In that sense, there is a shift in power from service provider to the person supported. As people increasingly govern their own arrangements and are supported to do that, many things will be shifted.

As people are more in control of their own services and are directing them - and are being supported by their families and friends in doing so because some people will need significant levels of support to do that - the work of the regulator will also be impacted because there will be a wider range of models. It will not just be a conventional organisational hierarchy with a board and a management structure. Increasingly we will see new models or governance and oversight of support arrangements come into play and they will have to be part of a new framework.

For my own part, and Mr. O'Donnell might have a different view, I think the direction that HIQA is talking about in terms of a different regulatory framework is very welcome. Certainly, for my own part, I think it has taken a lot of cognisance of the experience over the past number of years.

Some of the struggle, to which Mr. Colfer referred, concerns providers either being hesitant about what can be done within the current framework or providing different models of service but with great uncertainty about being in breach of some regulation. Therefore, moving to a different framework would be welcome.

Mr. Brian O'Donnell

The question of cultural change was mentioned by Ms Dunnion. At this point we should be fair to the Legislature because national disability policy has seldom, if ever, been more exciting and full of potential. Resourcing is of course required for effective implementation, but a key prerequisite in the effective implementation of disability policy is culture change. Many organisations have been around for a long time. Some, in fact, have been providing services since before the foundation of the State. Practice culture therefore becomes embedded in organisations. Some people have described the scale of the challenge as being akin to turning the Titanic in Dublin docks.

I mentioned some of the work we are doing ourselves, including shared learning events, study visits and bringing in international experts. That work is bringing about a realisation of the need for culture change and how one does it, which is critically important. As the chief inspector said, it is not without a challenge and it is a slow-burn matter. As CEO of the National Federation of Voluntary Bodies, I am satisfied it is happening on an increasingly progressive basis over time.

Chairman

Deputy Durkan's question concerned volunteerism. Is that still coming to the fore?

Mr. Brian O'Donnell

Yes. I will come back to Deputy Durkan about the numbers. Generally speaking from anecdotal evidence, there is a challenge around the numbers of people volunteering. A lot of it concerns the need for Garda vetting, but not exclusively. I do not want to offer Garda vetting as some sort of excuse. It is a good thing and I was surprised to hear it is an issue in some organisations. If it is okay for the committee, I will come back with the numbers in due course, and also on the other question which was the base of knowledge they are bringing.

Chairman

On behalf of the committee, I thank the witnesses for coming in to give evidence. I thank Mr. O'Donnell and Mr. O'Regan for their expertise.

As there is no other business for the meeting to discuss, we will adjourn until 9 a.m. on Thursday, 11 May 2017. Is that agreed? Agreed.

The joint committee adjourned at 4.25 p.m. until 9 a.m. on Thursday, 11 May 2017.