Apologies have been received from Senators Bradley and Murphy O'Mahony. The purpose of today's meeting is to discuss living arrangements for people with disabilities as part of a programme we are doing. On behalf of the committee, I extend a warm welcome to all of the witnesses from the HSE: Dr. Andy Phillips, regional executive officer, HSE South West; Mr. John Fitzmaurice, integrated healthcare area manager, HSE West and North West; Mr. Gerard Tully, assistant national director, adult disability services; and Dr. Evan Yacoub, consultant in mental health and intellectual disability services.

Before we begin, I want to make a statement in relation to a public meeting on 19 November 2025, where we discussed living independently in the community for persons with disabilities.

During the public meeting two questions were raised by Senator Clonan with Disability Federation Ireland which DFI stated it was not in a position to address comprehensively. DFI has written to the committee to address the matter. The committee has agreed to publish the DFI letter and link the letter to the transcript of 19 November. I thank DFI for engaging with the committee on this matter. Senator Clonan, do you want to say something?

Chair, I echo your statement there. Unfortunately on the day, based on a misunderstanding on my part, some of my questions may have given the impression DFI was not fully on board with the legislative campaign. I am happy to confirm I enjoy great support from DFI and hope to continue to engage constructively with it going forward.

That is perfect, thank you.

Before we start I must give a note on privilege. All witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statement is potentially defamatory in relation to the identifiable person or entity, they will be directed to discontinue their remarks by me. It is imperative they comply with any such direction I may make.

The evidence of witnesses physically present or who give evidence within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege. I would like to remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex, so members of the committee attending remotely must do so from within the precincts of Leinster House.

I call Dr. Phillips to make his opening statement, for which he has five minutes.

I thank the Chair, Deputies and Senators very much for the invitation to appear before them. Across the State many colleagues are working very hard to improve services but there is so much more to do. We know we need to work together across government, in education, housing, employment, transport and other areas to deliver the best outcomes for disabled persons and their families.

There are more than 1.1 millon people living with disabilities and the HSE corporate plan commits to providing them with integrated care in the right place and at the right time. This is aligned with delivering Sláintecare and addresses the requirement to sustain people with disabilities in the own communities, to support them close to home and to partner with them and their families. We deliver a wide range of personal and social care services to around 90,000 children and adults living with disabilities. At the end of 2025, 8,911 residential places were provided as homes for disabled persons and over 20,621 day places were provided in addition to rehabilitation training. In 2026, 4,500 individuals will receive both residential and day support so overall a combined 26,500 people in our communities will receive these services. The overall budget is €3.88 billion in 2026, with 64% and 19% allocated to the provision of residential and day supports, respectively. We are committed to getting the best value from this investment to maximise participation and engagement in community life and doing so according to the will and preference of those supported.

Personal assistant and home support services are delivered to 10,500 people, with just under 2,940 people availing of up to nearly 2 million hours of personal assistance and over 7,523 people availing of nearly 4 million home support hours. We are aware we need to provide more respite and in 2026 we are committed to delivering 175,000 core overnight and 91,000 day respite sessions to over 7,332 adults and children and their families. Budget 2026 has increased the number of residential places from between 70 and 90 in recent years, to 199 in 2026. Some 72 of these are planned to be developed on a full-house basis. The allocation to meet this is significantly increased from 2025 and that is in addition to the full year effect of 2025 supplementary funding, which is most welcome. There is also a very significant focus on respite in 2026, with €25 million going across 61 projects. I will speak a bit about that. We are committed to working with our voluntary partners under the partnership principles agreed. The Next Steps Bridge to Community programme engages voluntary partners through the Federation of Voluntary Disability Service Providers to develop existing and new services for disabled persons through communities of learning. Some 34 organisations are working together on this with learning labs that are rights-based and built on social innovation to support sustainability of organisations using paid and voluntary supports.

The focus on housing over the previous ten years has been on decongregation and Time to Move on from Congregated Settings. There has been very significant capital investment in that work. Progress has achieved through codesign between the Department of housing, the Housing Agency, the HSE and section 38 and 39 partners. We have also progressed the capital assistance scheme and intend to enhance that. We are very grateful for the significantly enhanced investment in the capital programme geared towards specialist accommodation where residents have significant specific needs, including disability, advanced age-related frailty, dementia and the likes. The capital programme will support day service, respite services and accommodation for children’s teams working with children and families.

We are concerned about the high cost of placements with private providers. Provision by private providers has increased to 14% of the total. This is linked to the lack of housing and capacity constraints associated with regulatory compliance. The change in profile and complexity of those supported has also increased pressure on service. We are meeting governance challenges arising from the mix of residents at locations coming from different parts of the country with separate individual oversight of their care, but we are now recruiting residential planning and review teams in each of the regions to work together to provide a singular view to achieve high quality of services at the most appropriate cost. We are progressing a revised procurement framework for residential services to ensure we purchase services on a planned basis at scale, learning from the review of private providers to achieve the best service and value for money. We are working through the procurement processes and will take forward this framework in the first half of 2026.

We are also reviewing elements of the Time to Move on from Congregated Settings. Challenges identified to us by the sector include facilitation for older persons with disabilities, those requiring medical intervention in step-down care and those people living with advanced dementia. Colleagues in estates are working on design arrangements and we have progressed the design of six ten-bed facilities in the first stages of the capital process. We are developing actionable insights from data across the system. We have excellent insight into records for day services and a database to support the management of vacant places. We are extending that across residential services that will support providers and regional colleagues.

In conclusion, all of our work is aligned with policy and delivered by the evolving integrated HSE regions. HSE centre contributes specialist knowledge that enables and provides assurance that there are consistent standards, guidelines and models of care across each region. I thank the committee for the opportunity to contribute to its work and to answer members' questions.

Thank you very much, Dr. Phillips. I invite members to put their questions. I ask them, please, to adhere to the agenda item scheduled for discussion.

I thank Dr. Phillips for his presentation. I want to ask about residential places for adults with intellectual disabilities. All of us are contacted almost daily by elderly parents looking after an adult at home. There is concern and fear. A parent told me recently they could not sleep for nights on end thinking about what might happen to their son or daughter when they are not able to look after them or when they have departed. I think the 2024-2026 plan provided for 900 additional places. There were 96 provided for in budget 2024, 70 in budget 2025 and 250 in 2026. How many of those places have been provided? We also have something like over 1,200 people with these disabilities under 65 years of age inappropriately placed in nursing homes. What can the officials tells us about that whole area? What is the current situation? What is the waiting time? What places have been provided? What is it intended to provide? What is the current waiting time for an adult with an intellectual disability?

I thank Deputy Healy for the questions. I will get colleagues to answer specific elements but I will first say I have tremendous empathy for parents who have children with intellectual disability and other disabilities who are in that situation. Their children are getting older. There are also younger children and we have many instances of parents who are really at the end their tether. We need to support them more effectively. There was a particular question about under-65s. Mr. Tully might be best placed to answer that one.

I thank the Deputy for his question.

There are a number of elements to it. I will start with the under-65s if the Deputy wishes. The Wasted Lives report was published a number of years ago. It identified the fact that there were a significant number of individuals under 65 with disabilities inappropriately placed in nursing homes. A programme was established at that time to identify what could be done to support those individuals to move to community living. Like any of these programmes, it takes a couple of years to get traction. In the initial years of it, we have supported about 120 people to move from nursing home living, where they are under 65. We have three general solutions to that in terms of moving to the community. One is where people move back to their own family home. We have done that in a number of instances. It is done with increased support in terms of additional personal assistance or home support into that family home. It is the ideal solution and what we would want, when it is delivered according to the will and preference of the individuals who wish to move. We have a second category of individuals who would move across to ordinary residential disability services. That is probably the larger group. In most instances, that requires the adaptation of that residential home or the family home. That has been done under the housing adaptation programme and the scheme that is available, as the members will know. Finally, we have a small proportion, about 9% of those who have moved so far, who have moved to independent living in the community, into a new living arrangement with PA support. That is probably an ideal for them.

As regards getting traction, we have significantly increased investment in this. We have €8 million assigned to this year's budget for a further 45 people, at least, to move from nursing homes. There was a question on waiting times. It takes close on two years for that engagement and involvement with the individual through liaison staff that we have in each region to deliver this. This year we have €8 million for 45 people to move. That should gain significant traction and an increase, as would have happened around decongregation, as we move through the programme over a number of years.

The last element of the under-65s is in-reach supports to enhance quality of life. We have €2 million to support that this year. That will mean increased inputs in terms of personal assistants going in to support somebody where they currently live and to support them out to the community. The funding is also there to provide aid and communication devices and the likes. There are more generalised supports as well, for example our neurorehabilitation teams and the neurorehabilitation programme that is in further development this year with enhanced focus. That is going to support a cohort who live in nursing homes, are under 65 and have acquired brain injuries to have a better quality of life. I can pick up any of the other issues but I am conscious of the time.

I will ask Dr. Yacoub to deal with the question about intellectual disability.

As a clinician I meet a number of parents on a regular basis who report these concerns about having an adult child with an intellectual disability living with them. Usually the response would be to try to convene the stakeholders together to address the issue. For example, if there are any concerns about the adult child's needs and there are any clinical interventions required, that would be addressed. Otherwise, it would be a question of looking at the residential waiting list and a business case for residential care. It may be that meanwhile, until that is convened, some respite may be appropriate. That may take the form of residential respite, home-sharing or in-reach support. There are different interventions that could support the parent and their adult child until such a point that full-time residential care can be delivered to the individual.

On the places that were provided for under the last three budgets, 2024, 2025 and 2026, do we know how many of those places have been provided? How far down the road are we in providing some of the 2026 places? On the nursing homes, obviously it takes time and cannot be done overnight. Mr. Tully said it will take about two years. In two years' time, are we going to be any closer? Are the figures going to be very similar? Are we making any inroads into that situation?

I will pick up that question. Yes, we are making inroads but the Deputy's first question was about how many. We will deliver just over 750 residential places over the three years of the action plan associated with the capacity report 2024-2026. We committed to deliver 900, we will deliver 750.

How many of those have been provided?

750 between this year and the last two years. That is about 220 per year.

That is the intention, but how many have actually been provided?

About 220 per year for the last two years, and this year will increase.

There were 266 emergency placements provided in 2024 and 241 up to September of 2025. In total, over 500.

In relation to the nursing homes, are we making progress? Are we going to be eating into those figures?

As of November, we have seen the first reduction in the number of under-65s in nursing homes. We are making progress and we will have 45 this year. The key answer to inform the Deputy's question relates to whether there will be a continuation of placements into nursing homes. There is a reduction in that. With the implementation of the assisted decision-making process, there is more and more consultation and engagement with people. Our aim with the increased allocation is to deliver more services in the community. Dr. Yacoub referred to additional PA, home support and accommodation in the community as an alternative. Yes, we will be making inroads into it.

As of the end of 2025, do we know how many are still inappropriately placed in nursing homes?

There may in some instances be some individuals who wish to stay in a nursing home, appropriate or not. There were 1,209 at the end of November last year. That is the last figure I have on that.

Okay, thank you.

I thank everyone for travelling and for providing the briefing note in advance. I come from County Meath. We come under the Dublin and north-east region. I appreciate the report from Dr. Yacoub in relation to the south and west. Under psychology services, is all the information supplied for the south and west region? There is a reference to the north and east. For my own clarification, is that Dublin, the north and east, or is it specifically the south west, and the north and east of that regional health area?

The witnesses did not provide that document. It came in from-----

Primary care psychology. I beg your pardon.

No problem.

On out-of-hours and emergency planning, that would be a particular issue in our area for, say, force majeure, bereavement. I might list the questions first. They are all related to the property piece and also front-line staff. What type of out-of-hours emergency planning is the HSE embarking on? There was mention of being in the process of recruiting residential planning and review teams.

We have the national ability supports system, NASS, the Housing Agency and a fairly comprehensive HSE estates service. Why is there a belief that there is a need to set up a new team in circumstances where the relevant resources probably exist already? I would be concerned that setting up a new team would reduce the availability of funds for bricks and mortar and personnel to support people in dire need.

Mr. Tully might be best placed to answer that question.

Starting with the planning and review teams, their purpose is largely to work with residential providers where residents living in a location come from different parts of the country. Up until now, we have reviewed those locations nationally. Each CHO or IHA area of origin will go in and look at its own individuals. They have oversight of their own. In order to have overall governance of that and overall sight of rosters, supports and quality and cost of service, it was necessary for us to put a group together to look at it. We have done that.

In the evolving new structures with regional authorities in terms of governance and oversight, we are seeking to put together a small team in each region so that each of those teams, with three qualified clinical staff, can look to see what services are being provided, the cost of those services and what the rosters are and the effectiveness is. We will co-ordinate that. We will work with each of the teams to ensure that there is one consistent view of locations and that we achieve the value for money and quality of service required. Hence the requirement. It is perhaps more about reviewing than planning. We have a lot of detail on the NASS, as the Deputy said.

Could Mr. Tully provide an estimate of the percentage, from an accounting perspective, that the administration aspect would account for vis-à-vis capital and salaries? Would it be in the region of 10% of the budgeted amount for respite or residential provision?

For the planning and review teams.

Yes.

On the personnel, there are 18 people split into six teams of three. The average cost is probably €65,000 per staff member, so it is a very small percentage of the overall cost of residential or respite services.

Mr. Tully can appreciate our concerns.

Yes, absolutely.

Previous witnesses detailed to us the constraints that obtain. I will not speak for others, but I am concerned about front-line services and about the supports people get.

To answer the question-----

On the emergency planning.

No, in terms of the percentage, my quick maths would suggest it is less than 0.5% of the total.

Great.

It is very small.

I appreciate that. I thank Dr. Phillips.

Going back to emergency and out-of-hours planning, I have had two cases in County Meath where there were bereavements. The people concerned, the parents, were on palliative care. In one case the bereavement was anticipated, but there was nothing after 4 o'clock on the Friday afternoon. Is this something that is going to be considered? Was that just a random event in County Meath or is there an overall plan for something like that situation?

If I may, I will ask Mr. Fitzmaurice, who now has an operational management role but who has a long history in disability services, to address this aspect. The HSE is moving towards a seven-day service. All of these things are going to be much more available at weekends and in the evenings.

It is a situation that is particularly challenging for any family. We can only empathise with any family. I would love to say it is an isolated incident, but that would be wrong because it does occur. The challenge lies in the fact that where we provide respite and a variety of respite - overnight, day and alternative types of respite - it is often planned and scheduled. Something like that situation can be challenging, although I appreciate the person was palliative, so there was a timeline. You would try to make provision for that individual. In that situation, it often requires that you may have to cancel respite for somebody else. There is an impact and a consequence from doing that, unfortunately.

We are getting to a place where we are certainly able to plan more effectively. Over the oast number of years, we have had a challenge in that we have not had the supply of accommodation or respite required. As we scale up our respite facilities and respite options, that will allow us to build in contingencies for emergencies as they arise. That is very important. Ultimately, what we are trying to achieve is to support a person to remain at home and support families to care for people at home, and we need a body of accommodation to do that.

Is there a timeline for this emergency planning? Can Mr. Fitzmaurice say it is an objective or a goal to be reached in a certain number of months?

Even this year, €25 million has been set aside for additional respite. That is going to increase the respite threshold we have in terms of overnight, day and alternative options. In that situation, we obviously need something that can provide weekend provision. I can only talk about my area. We are opening a residential house in Sligo. We have one in Leitrim. There is provision for all the counties across the west coast, and that would be replicated around the country.

Will that be with for-profit providers or with the community and voluntary sector?

It is a mixture, depending on the situation. It would go through a tender and procurement process. The outcome of that process would determine where we get the best value for money and if it is a private provider, a voluntary provider, or, in some instances, the HSE, because, obviously in the north west, we provide services for ourselves.

We have Na Driseoga in Navan, which I must compliment. It is an excellent service. I will reserve the rest of my questions for the second round.

In terms of an operational delivery system, there is a tension between reserving capacity for emergencies, which is not filled until you have an emergency, and using all of your available capacity. We face it much more in the health system in terms of patients who have a fractured hip, stroke, etc., where an immediate response is needed. This means there is a need to reserve some capacity. Of course, there is an enormous demand, particularly for respite, so you do not want to leave too much capacity fallow, but you do need some emergency provision. There is a tension between the two.

What would be more acceptable would be to have some fallow capacity within the community and voluntary sector in order that we do not have the default of always turning to private providers. If there is a legislative restriction there, that is something this committee would need to hear. That is something we can collaborate on and move forward. I thank the Cathaoirleach for his indulgence.

I welcome the witnesses. I just want to confirm something. Dr. Phillips is the REO of HSE south west.

Yes.

In the context of living with disabilities, as a carer I am getting older - I have a roundy birthday this year - and finding it harder to provide the physical support and care for an adult son, I am aware of case in HSE south west where a lady, a single mother, I do not know what her circumstances are precisely, but she is on her own and cannot cope with an adult disabled child. In a crisis, she went to get support from HSE south west. She got a letter from the head of disability services in HSE south west in which she was told:

You should be aware that there is a legal obligation for parents to support their child financially if the child is dependent. This applies to all children to age 18 and to 23 if in education, but indefinitely if the child has a disability. Accordingly, you are legally obliged to support your daughter and that includes the provision of accommodation.

There are a couple of things there. It means that we, in the view of the HSE, are primarily and exclusively responsible for the care and accommodation of adult disabled children until we die. Now, the public rejected that concept in the care referendum of 2024. It was the largest ever rejection of a referendum in the history of the State. Does Dr. Phillips support this view that we are legally responsible? This wording indemnifies the State, which was the intention of the wording put forward by the Government in 2024. Does Dr. Phillips support this view set out by his head of disability services in HSE south west?

It is clearly difficult for me to comment in this forum on an individual case. I am not sure it is appropriate for me to do so.

I will just interrupt Dr. Phillips there. This person has come forward-----

To clarify, I would not allow people to raise individual cases were it not for the fact that it is clearly anonymous and we do not know who the person is. There is no way we can go back to the person. It is in order and it goes to the point.

A rhetorical device deployed by the HSE regularly is to state it cannot comment on individual cases. This person has come forward with this information. In the cases of people who are victims of sexual violence, rape and assault, they come forward and allow themselves to be identified in order that their case can be discussed. I ask Dr. Phillips, without reference to the specifics, whether he supports the formula of words which states that the parent who received the letter is "Accordingly ... legally obliged to support your daughter and that includes the provision of accommodation" and care indefinitely. Is that his view of parents like me?

My view of Senator Clonan and every other parent in this situation is to have tremendous empathy for them. I have spoken to many hundreds of parents in similar situations.

Does Dr. Phillips think the letter is empathetic.

I am happy to continue to answer Senator Clonan's question or to otherwise-----

We do not have much time. If Dr. Phillips is empathetic, does he think this wording is empathetic?

I do have an understanding of this specific case and the circumstances are rather difficult. As I said, I have tremendous empathy for parents and this particular parent. Just to say, it is not a sensible thing for parents to drop their children off at a hospital.

Drop their children off. Does Dr. Phillips understand what happens when we go into crisis? I do not know whether Dr. Phillips has children.

I do.

Would Dr. Phillips drop off his child?

I do have a child. I have a disabled child.

Can Dr. Phillips imagine himself in such extremis that he would go to the emergency department with that child?

That is exactly-----

That is not dropping off.

That is exactly the empathy that I am demonstrating.

There is no legal basis for the idea that we are legally responsible for accommodation and care indefinitely. I do not believe there is such a basis. Dr. Yacoub has a higher specialist qualification in forensic intellectual disability. Is that correct?

I worked in forensic intellectual disability in the UK.

Did Dr. Yacoub do the higher specialist training?

In intellectual disability but not in forensics.

Dr. Yacoub did higher specialist training in intellectual disability.

Yes.

In respect of adults.

Yes.

Dr. Yacoub worked in intellectual disability with children in Galway. Is that correct?

I provided joint clinics with the consultant paediatrician.

We know from the north Kerry and south Kerry CAMHS situation about the destruction of the lives of young people and children in CAMHS because people were appointed who did not have higher specialist training and who prescribed inappropriately and without supervision. That is what caused the damage. Does Dr. Yacoub support removing a consultant with higher specialist training as the lead of an interdisciplinary team in community mental health intellectual disability teams?

As important as Senator Clonan's question is, it is not for the discussion we are having today. Today's discussion is on living arrangements.

It is if we are talking about people living with disabilities in the community. Will Dr. Yacoub answer the question?

The model of service for CAMHS intellectual disability was launched in 2023. It very clearly states that clinical leadership for CAMHS intellectual disability teams resets with the consultant psychiatrist.

Does Dr. Yacoub support the removal of a consultant with higher specialised training as the clinical lead and the head of the multidisciplinary community mental health intellectual disability teams, as is the case in Meath? There is a community mental health intellectual disability team in Meath that has no consultant as the clinical lead. Does Dr. Yacoub support that?

My feedback is that the model of service is quite clear in its wording.

I am not asking about the model of service; I know what the model of service is. Has Dr. Yacoub lobbied to have a consultant removed as the lead of the multidisciplinary team in community mental health intellectual teams?

I have not.

Dr. Yacoub does not support that.

The clinical leadership of mental health and CAMHS intellectual disability teams is through a consultant psychiatrist because the models of service-----

Exclusively.

Yes.

I thank Dr. Yacoub for clarifying that.

I want to go back to the numbers with regard to emergency placements. We had Horizons, St. Joseph's Foundation and a number of others who operate long-term residential care before the committee. They all said there is really no allowance for this emergency-type situation where a family comes asunder and somebody ends up leaving somebody in the emergency room because they cannot cope. At that stage there is an emergency reaction from the State and 99 times out of 100 - and I will ask about these numbers - it ends up involving a private provider, which is considerably more expensive. Someone said that something costing about €200,000 per year ends up costing €400,000 and that €400,000 becomes €700,000. The figures of 266 for 2024 and 241 were mentioned for emergency placements. Are these the circumstances that were being spoken about?

Not all, but by and large. Not all of these situations ended up in an emergency in a hospital setting.

I know, but they were emergencies in a general sense.

In a general sense; and some of these people may have been staying in respite facilities. We are freeing up capacity at that level. It is a multitude of placements but there is a definite requirement.

There was a conversation earlier about some sort of slack in the system, but it looks like there still is not. I put a question on this to Bernard Gloster and he said the best-case scenario and the want in this regard is that local authorities will provide. We know the issue with housing, however. By hook or by crook, we need to be able to provide this in a way other than the way in which it has been provided in an emergency setting at huge cost. Do the witnesses have numbers for how many of these people went into nursing homes or residential care? How many of the residential care placements were private? Could we also get figures on how much this cost and a comparison with a situation whereby we had slack in the system? What do we need to do to improve that?

I thank Deputy Ó Murchú for raising this issue. We flagged to the sector in 2024 and 2025 at pre-budget events that there was significant drift to private providers. We were keen to articulate this because we have had a challenge in recent years whereby for a number of reasons our voluntary partners were constrained in the provision of new services to people.

They say that this is the case unless it can be organised beforehand. There is also a particular issue with how the capital assistance scheme is being operated, but I know that is not within Mr. Tully's remit.

I can come to it. We are very keen that the voluntary sector, which provides more than 70% of residential services, I will not say first call but more likely to be in a person's locality. I would be very keen that each section 38 and 39 body has the capacity and latitude to meet all of the needs coming their way.

It would be better value as well.

It is critical to compare like with like. We have analysed about €1.4 billion worth of service arrangements over the past couple of years. The figure presented to the committee which Deputy Ó Murchú has of about €185,000 per residential place is current and accurate for the existing almost 9,000 places throughout the country. It is €185,000, with maybe another €28,000 for a day service if there is that component. This, for the most part, is with regard to people who have come into the services over many years and have settled into a lifestyle and a support requirement, which is probably moderate and at the lower end. When our colleagues in the regions look for a place they are invariably not looking for that level of support for somebody; they are looking for something with more complex care requirements and-----

I would imagine that the emergency situations are far more likely to involve complexity or that something has changed drastically in the family set-up.

Absolutely. We have a significant and well-developed residential management process whereby the voluntary providers across the region come together with the HSE to look at emerging capacity. If somebody in a residential place unfortunately passes on, they look to see whether there is capacity and compatibility on the list whereby someone can move in there. We are very keen that this capacity continues to be available.

No, that should be the first port of call. In a perfect world, local authorities would provide this to these voluntary organisations from the point of view of their having the capacity to look after people. What I am asking, however, is what we need to have put aside. When we had some of the groups in, they thought it was around 90. Mr. Tully is saying we really need to have an allowance for upwards of 300 emergency placements, and in a perfect world we would remove them from being emergency placements. Even if Mr. Tully has to give them to us afterwards, I am asking for the figures for how many of those are for-profit operators and what the difference is compared with if we could have had a proper arrangement with a community voluntary set-up.

There is a significant convergence between the cost of section 38 in the last couple of years and the private providers. They are pretty much on a par now. They cost between €375,000 and €420,000, be it either section 38 or a private supplier.

Mr. Tully is saying there is not a significant difference?

There is not a significant difference if you look at the care and support requirements for the same individuals. If you take the average cost of the existing 9,000 who have lesser support requirements and have settled into their place, there is a convergence.

I get that. You would need to compare a complex case with a complex case.

That is the point.

On highly complex cases, there is the average and then we have a small number of cases that are very significantly more complex and more costly. I am seeking to provide a better provision for a child at the moment that is costing us around €900,000 a year. That is a very highly complex case. I want to look at the value for money and quality of service to see if we can do better. In particular, with these emergency placements where parents become overwhelmed and the situation changes, where there are very complex cases, it does take us some time to provide appropriate placements. That is what I need to work on in my area so that we have places ready to go in that situation. It is a question of how many of those you have lying fallow compared with the use of the system generally.

What do we need that we do not have at this time? That is the ask that needs to come from the HSE and ourselves.

In my area across the country, we need more respite places and we need more provision for highly complex places. We have spoken about the need to have places for more people under 65 years. We are making progress-----

What number do we need that we do not have?

That is a good question.

The capacity report identified clearly 900 for that period. It identified between 90 and 100 and 3,900 between 2022 and 2032. We are approaching that in the delivery but we would prefer to do that on a planned basis.

We are not doing it.

A significant difference will be seen in this year's national service plan that 72 of this year's residential placements are to be very much planned. They are geared towards working with whoever can provide for us on a four-person basis so that we get really good value for money and a good quality of service. We have approached and worked with the voluntary sector. It has identified 90 locations or sites where we can-----

Does Mr. Tully think he will need less emergency provision this year?

Language is important here. We will need that number of residential places but our ambition is to ensure it is not on an emergency basis.

So we still need more capacity.

Yes. From the NASS, from the school leavers' profiling exercise, we know exactly the number of people who are coming our way and who will need the service. Of course there is an emergency from time to time where the primary carer is not available. In that instance we have to work to put services in place. In rare events we have to establish a new residential service on an emergency basis. We are working with the regulator and the Department on an adjustment to the legislation so that the temporary emergency residential place can be put in place by a section 38 or section 39-----

Can the witnesses provide us with the figures?

Sorry, the Deputy is well over time. We must move on.

I welcome the HSE and the continuation of this focus for our committee. I will put a question to Mr. Tully. In a parliamentary question submitted in November, I asked for the number of people with an intellectual disability, particularly adults, awaiting placement nationally. I asked for it to be broken down by region and length of time waiting by one, two, three years and so on. The response from Tom McGuirk, general manager of disability services, access and integration at the HSE was that there was no centrally maintained waiting list for residential services. He said the local HSE regional health area would be aware of the need and requirements in their respective areas and would work with the local service providers with a view to responding to the level of presenting needs within the resources available. It sounds quite vague. I also requested some information on the number of people with an intellectual disability currently residing in facilities that are more than 100 km from their home. That is a reality that is experienced by both young people with an intellectual disability and adults. It is very basic and consequential information because it often involves the person with an intellectual disability being displaced very far from their community and family in the context of a crisis, frequently after languishing for years on a waiting list. In some cases, as we have heard here in recent weeks, placements arise following the loss of a parent, so there is traumatic upheaval on top of profound grief. This information is also highly relevant to whether we are in any way upholding the UN Convention on the Rights of Persons with Disabilities and especially the right to live in one's community. One of the central problems facing adults with an intellectual disability is that much of what is happening in the sector, much of the scale of suffering, deprivation and dislocation, has been taking place in the dark. It is only coming into clearer view now through the campaigning of groups like Before We Die, which will be in Leinster House next week. Why is this basic information not maintained or accessible? It sounds like the waiting lists are very vague. When it comes to the number of people with an intellectual disability who are living over 100 km from home, and I know of one who lives 200 km from home, we really need to know that information so that we can plan for people who are in those very difficult situations.

I thank the Deputy for the question. I can answer both parts. We have a disability services advocation management tool. It is a management tool that accounts for every individual who is waiting for a residential place. We have detail on that which we hold centrally and we are fully aware of that. We use that in the Estimates process to put forward the requirement for the supports. We have that by region, so I think we can provide those numbers to the Deputy if he wishes.

We also have the NASS which was also mentioned here. We have significant information on that in terms of individuals per region across the country. The question did come to me at one stage of how many people are more than 100 km away. I know the individuals' region of origin and I know the region where they live but I do not know specifically eircode to eircode. I think that was the challenge when that question was asked of me as to how we would do it.

Is it not the case with a lot of parliamentary questions, if not nearly all of them, that they are just cascaded down to local service managers? Obviously Mr. Tully would not have that information himself, but the more he delegates the question to the local area, the figures would not be that hard to find. It might take a little bit of time.

You could, but if you were to look at the number of people who are out of area, there would be a fairly significant administrative burden on doing that and, as someone said, we would prefer to dedicate all our resources to the provision of services as opposed to administration. If it is something the Deputy really needs, I am sure we can work on it. The concept and principle of what the Deputy is pursuing of people being supported according to Sláintecare at the right place and right time close to their own home is our primary ambition. If we can work both with the voluntary sector and the private providers or whoever delivers the services close to an individual's own home, that is their community. I completely agree with the Deputy on the principle. We are concurrent on what we are looking for.

There is very significant data available on people who are out of area. There would be a fair bit of administrative work required.

Sometimes, people who are out of area with a provider might move homes quickly for various reasons. Determining their address of origin needs a bit of work because some have come from the family home, others might be of no fixed abode and some might have come from a local provider where the placement broke down. So, that is where-----

My issue is that no attempt was made to provide any information. If we are planning for services that have such a bearing on people's lives, that is a reasonable request.

Dr. Phillips said in his opening statement that, "We have had governance challenges arising from the mix of residents at locations coming from different parts of the country with separate individual oversight of their care." Over the last number of weeks at committee meetings, the number of providers in the disability sector has been striking. There are section 38 and 39 providers and private, for-profit companies. In Cork alone, we have Horizons Cork, Corlann, CoAction West Cork, St. Joseph's Foundation and Enable Ireland. There are many more throughout the country. Will Dr. Phillips provide a sense of what it is like for the HSE to provide residential services through such a range of services? Does it feel very fragmented and disjointed? Is there an argument for disability provision coming under the HSE to create equity and a more streamlined governance? There are pitfalls to that because a great deal of innovation has developed within those section 38 and 39 services, which is important not to lose. To come back to the quote about the governance challenges, if a person originally from Cork is assigned a placement in, say, Kildare, is the clinical responsibility now in Kildare or in Cork? How does that work?

That is an important question. I will answer the Deputy's previous question first. We will commit to providing the Deputy with whatever information we can reasonably easily acquire. The Deputy is right. It is important for planning purposes we get that.

There is fragmentation currently. We are trying to move things together. There are good forums where these organisations come together. Much more co-ordination across the system is needed, however. We are getting to that with the regionalisation of our strategy. I appreciate we are not even in the regional structures quite yet. The integrated service delivery, ISD, structures came in on 3 March. There are safeguarding issues and other things identified for people who are out of area. Some people are out of area in different countries, while others are within the State of Ireland. We are developing those processes to ensure we have good governance when someone from Cork or Kerry is residing in a different place because we continue to have governance accountability for them, even though the individual clinicians have clinical governance responsibility to deliver according to their professional standards.

This is where the residential placement and review teams will be important. For example, if I place someone within my integrated health area, IHA, or outside of it, there is an onus of responsibility that I follow that individual. The governance still rests with me even if the placement might be with a private provider. It is important I review that and ensure the person's needs are being met. Those review teams will be critical to ensuring that all of our thinking is aligned and we get value for money. Those review teams will have to work closely to ensure that is managed in a more structured and co-ordinated way.

The section 38 and 39 providers spoke about the forums and how they come together. It sounds like there is a lot of important dialogue between them, but they said the private, for-profit companies are not part of the forums. That sounds quite problematic.

I agree. There is the National Federation of Voluntary Bodies, and we need to look at that. There is an opportunity for us all now in that regard. Dr. Phillips talked about the regions' maturity. As we mature, we will have local voluntary forums. We need to look at the for-profit sector and how we embrace and bring it into that discussion and dialogue. There are huge opportunities to do that in the context of each region.

Gabhaim buíochas leis na finnéithe go léir. I tuned in online. One of the things that has been sitting with me since I heard it is that one of the HSE's service users is costing €900,000 per year for residential services. It breaks my heart to think, as a behaviour consultant, what if that child had received €900,000 for speech and language therapy, SLT, behavioural support and occupational therapy. Even across five years, if we break it down at the expensive rate of €100 per hour, he or she would have received 9,000 hours of intervention. For many children, if they had received 9,000 hours of one-to-one intervention, who is to say they might not have needed such a level of residential care. We have this chicken-and-egg situation. We have so many people requiring respite and residential care but we have to get to the other side where we are pumping more money into early intervention and avoiding spending so much on residential care.

That aside, strong witnesses were before the committee last week talking about success stories in relation to moving towards independent living. In Limerick, there is a good example of how the local authority is working closely with the HSE and the section 38 and 39 providers. There are then not so good examples with other local authorities. From the point of view of the HSE, is a standardised approach in place yet? Are there plans for the HSE, and the section 38 and 39 providers with which it engages, to work on a more standardised basis with local authorities? For example, I think of two gentlemen engaging in day services in Mayo who want to live together in Achill and share personal assistance hours. It is trying to get that co-ordination that is happening so well in Limerick to happen all across the country.

The two points the Deputy made are linked. I completely agree in terms of early intervention. There is a huge amount of evidence that shows that intervening early with a child, up to five years of age in the context of neuroplasticity, etc., gives at least a 15:1 return on investment. For example, €1 yields €15. People find themselves able to take part in the world of work and society, etc. We must do better in terms of early intervention.

Similarly, in the context of working across government on housing, education and employment with local authorities, Limerick City and County Council has done well. It has a focus on social determinants of health, and we are developing that across the country. The first thing we are doing is carrying out an understanding at a population level of the strengths and needs of local populations. We are working with councils and others on how to make the best of those strengths and needs. The standardisation is coming in. It is a planned part. We need to do much better across the country, however. Limerick is a good example where it is done well, and we must learn from that.

What will that look like or is it still at an early stage? Is it going to be a social worker who functions as a go-between or a family liaison officer? What will it look like in best practice? I know from dealing with local authorities that their housing departments are absolutely stretched to capacity. The HSE is also stretched to capacity. What are the plans looking like and what are the timelines? We can see how effective it was in Limerick. While it still took about two years for people to move out of congregated settings, in the scheme of things, that is the timeframe the witnesses provided earlier.

We have an example of good practice in Galway and Roscommon. It is a partnership between the local authorities, Ability West and Corlann called the Living my Life programme. It has set out a plan to support 35 people to move to residential facilities. It is in conjunction and partnership with parents and carers, which is the model we want to aspire to because it is about all of us working in partnership. The project has delivered five residential placements in 2023, five in 2024 and an additional 16 in 2025. This year, it will be a bit more challenging because there is a housing stock issue but we expect to achieve a target of 35 placements over five years. That is good.

As the Deputy said, we have pockets of good practice in Limerick, Galway and different places. To be fair to our local authorities, they are very much embracing the need to work in partnership, and we are starting to see that. It is a good model because it allows us to plan more effectively and it is more cost-effective. It allows for people to be supported while they wait for a placement.

In trying to shift the move from emergencies, we need to have a plethora and continuum of supports available to people. We need intensive home support, as well as respite and personal assistance, PA, supports. All of that must come in tandem with the increased residential base. That is the sort of initiative-----

I am sorry to cut across Mr. Fitzmaurice but it is in the interest of time. If we know there are examples of good practice in Galway, Roscommon and Limerick, how quickly can we move away from good practice to a standard model? Where does that need to come from?

I will pick up that. Mr. Fitzmaurice referred to the continuum. We have worked with the Department of housing and the Housing Agency, aligned to the national housing strategy for disabled persons, and we are looking for consistency across the country. Under the enablement model, that is what we do. There was a significant challenge in terms of agreement on residential support and a design. We have agreed that now with H15, which members have heard a little about. H15 is adjustable across the country for universal design plus and plus-plus. We brought that together with the chairs and leads of the care and support approved housing bodies last year and we have got that over the line. We have also looked at where H15 and that model does not work for people. We have looked at an individualised arrangement called A22, from the design manual in the Housing Authority. We had issues with the CAS, which I think were referred to previously, in some parts of the country. There was a ceiling put on CAS at which you just could not build the house. We have got agreement from housing colleagues that that ceiling will not be applied and that there will be flexibility and an adjustment.

For the time we have been involved in this, we have made significant progress now in achieving that progression in terms of the engagement. We are looking to have housing co-ordinators in each region to support the interface between the care and support element and the housing provision.

That last part is maybe that liaison officer or whatever. We often hear that somebody might be able to get a house but there are not the personal assistance hours, or there are the personal assistance hours but there is not the house.

I thank all the witnesses. They are very welcome here. I noted a piece in the Irish Examiner yesterday about the HSE's appearance at this committee today. One thing that was referred to in that article was that the HSE had not previously been able to say how much of the €2.2 billion budget for residential disability services was being paid to commercial operators. I want to know if the witnesses have that figure. It was also stated that up to 14% of total spend was on such accommodation. Is that correct? I want to check that and to see how things have changed in, say, the past five to ten years in terms of the reliance on commercial operators. What would things look like if there were more availability of housing capacity in general? How would that improve things for the HSE?

As regards the reference to 14%, it is probably increasing still. It may be moving this year towards 15% to 16%. It is more about the numbers as opposed to the spend, to be clear on that. The spend proportionately might even be slightly higher.

What has changed recently? There has been a massive movement towards private providers over the past five years. We articulated that to our voluntary colleagues. They have been constrained in terms of our policy efforts, whereby we want to improve services for all, and the regulatory compliance that went with that to ensure that is happening. That reduced the life cycle of places coming vacant. Then we also had the accommodation challenge. Previously, people moved into a congregated setting, so as services moved out to the community, we needed new houses for that. It is now based on the answer to the last question, that is, that our colleagues in the local authorities are providing those houses. There has been a significant shift. We can absolutely provide to the Senator the figures - we know them exactly - if she wants a point in time or whatever in terms of service arrangements and costs associated with private placements. I can get that for her and provide it to the committee subsequently.

That would be appreciated.

The other aspect is around the governance of the providers and ensuring there is oversight around those placements. A great deal of work has gone into that. There is a national team that would review the out-of-area placements with the private providers.

In relation to Deputy Toole's question earlier, the residential review teams will to an extent take over that role once they are established. There is something about the financial governance but there is also the importance of the clinical aspects of what they deliver, on which we have a lot of data.

In terms of the south west, Cork and Kerry in particular, does the HSE have long-term planning in place? Would the witnesses be aware of the needs over the next, say, five to ten years of individuals who will require these residential places? What has been put in place there? Could the witnesses expand further on working with the local authorities? Is there a need for a more joined-up plan there nationally in terms of working with local authorities across the country?

I will cover the south and west. This came up in the conversation I had with many hundreds of parents of children. They were known to the system but there was not a smooth progression and there was not whole-life planning. Following the conversation I had with parents, we know we need to get into whole-life planning. For example, if a child is born at Cork University Maternity Hospital at 22 weeks, we know that child will live with lifelong disability and we need a lifelong plan to support them, including, in particular, early intervention. We need to plan more effectively rather than children lurching from one service to another without that smooth planning across the continuum. Then it is a matter of fighting through into some of the other questions that were asked about when parents, because of age, are no longer able to look after their children and how we then plan that through. We will improve that whole-life planning because the issues are well known to us. That is one of the things regionalisation can do. There is the scenario and there is a population health accountability, not just a service accountability, so we can do that whole-life planning.

I refer to the figure mentioned earlier. Was it 1,209 people who are inappropriately placed in nursing homes? I am just clarifying that is a national figure. Do the witnesses have a breakdown for regions? Do they have figures for Cork, for example, on hand or could they-----

I do not have them on hand, but we have a full census, we have liaison officers in each area and we have full detail of all the persons. We believe we have full detail on all the persons.

Send those on to the committee later.

We can send them on, yes.

In terms of positive examples, are there particular areas the witnesses could point to where they would say independent living has truly been realised? Are there specific examples in the country that they would point to in that regard?

I have any number of examples. We have heard over recent weeks stories from the voluntary representatives who accounted for key success stories when people moved from home at the right time to semi-independent or independent living or into supported living. They do so on a planned basis, and we are very keen to do that. We have a procurement framework this year which will look to ensure that we can plan more. In those instances the ideal, and this is aligned to our day services and our outcomes monitoring framework, is to ensure that people live the best quality of life they can and that it is individualised, supported and personalised. We have a huge effort around that. Around 22,000 people attend day services and there are 9,000 people in residential services. We have many examples of people who have done extremely well. We have examples of people who did, unfortunately, have to move in crisis but who, within a short time, were supported back to a success story in that they can participate in life, they work, they travel independently to work and they have choice and control as to where they live, with whom they live and so on. There is no question about it that society is moving in a very positive direction on that.

I have a quick query. Mr. Tully spoke about adaptation grants in housing. Which grant was he referring to there? He said the process takes up to two years.

Yes, in some instances it does. I am talking about the housing adaptation grant in general.

Which one?

I do not know. Our colleagues in housing would look after that, but we have had significant challenges at times in terms-----

Is it the housing adaptation grant that the local authorities administer?

Yes, absolutely.

I understand that can be very difficult for families to draw down in different local authorities.

In some instances I believe so, and we did have issues in the past with tracked hoists and heights and so on. Through our intervention and engagement with housing and our aids and appliances colleagues, we got a circular issued on that and there is agreement now. The direct impact of that is that some people were able to move home who would not otherwise.

It is one of our success stories. Our colleagues in housing are keen to extend the scheme as much as possible to support families so that a child can remain at home when there is a required adaptation associated with neurodiversity or whatever. There are instances in some parts of the country where there are delays. I do not have the figures, but I know our colleagues have given us detail of a huge number of adaptations that have happened around the country.

Clearly, it would be the cheapest way by a country mile-----

Absolutely.

-----if we funded the local authorities properly, whether it is a stairlift down to a bathroom or anything like that. I thank Mr. Tully.

I will be brief because I am due in the Chamber shortly. Does the HSE have a target for the provision of respite care for adults with an intellectual disability? Is it one weekend in four, six, eight or whatever? If there is such a target, is that being met? The reason I ask is that regularly I have people on to me. In fact, I had a lady on to me last night. She is in her 60s and caring for an adult daughter. She tells me that there is effectively no respite care available in south Tipperary for her adult daughter. If an emergency arises, she may get some day or weekend, but other than that, there is no organised respite care in south Tipperary, particularly in Clonmel, which is quite a large town. I am wondering what the situation is in relation to that.

Apologies, for the reference the last time. I do not have specific detail on whether people get one night in four because it is tailored to suit the individual. What I can say is there is an unprecedented focus on respite in 2026. Since 2019, we have been increasing the provision for both the numbers of people receiving respite and the quantum. This year, through engagement with the voluntary providers, there are up to 61 additional projects to be delivered across the country, with a very significant increase in additional overnight and additional-----

Are any of those projects in Clonmel, by any chance?

I am not responsible for respite nationally but I cannot imagine but that they are, given the absolute increase that is happening across the country.

Will Mr. Tully come back to us on that?

I certainly can. I certainly would expect that the brothers or some of the providers in the south east would be looking to deliver additionality in the region.

Certainly, the provision is increasing. The provision is assessed on an individual and prioritised basis and that is good.

In my own area, we clearly do not have enough respite - parents are telling me that - and we need to increase that beyond what we currently have planned. I do not know the situation in Clonmel but we certainly need to provide additional day respite and overnight respite. We do not have enough provision. We are making some progress but we need to make much more progress in the coming years.

I have a few specific questions particular to section 39 and section 38 organisations that are providing support. When do we expect, through the WRC, etc., to get to a situation where equal pay status will be in place? We have to get there. We cannot have such a situation. St. Christopher's Services in my own local area in Longford is struggling to get staff. They are being higher paid in another organisation. We need a timeline. We have commitments within the programme for Government and I want to know when we plan to get there.

I am the chair of the housing committee. Are the local authorities across the country building enough independent living houses which are specifically for people with needs or are local authorities not providing enough of that? I know the answer but I want to hear it from the guests so that we can put it to the County and City Management Association, CCMA, when it comes in to us. They are in with us next week.

We have a massive shortage of respite and full-time care. I will not name names, but I will mention that I am dealing with the families of two youngsters who are in Mullingar Hospital and are high on the autism spectrum. For the last number of weeks these families have been in unbelievable circumstances that I would not like to be in, and I have an autistic son. They cannot get permanent care. You are talking about going to the High Court and putting legal stuff in place to calm those children down when their parents cannot cope. When are we going to get to a situation in which we can provide such care for those families?

If anything mentioned by Deputy Carrigy is outside the scope of what we are talking about, you do not have to answer if you do not want to.

I will take the question on section 38 and section 39 organisations first. Under section 39 of the Health Act, the HSE provides support to the providers. We do not determine pay levels. We have supported the process around the section 39 organisations with the WRC to increase the funding available to them. In the last round, it was over 8%. In this round, it is over 9%. The gap is getting smaller and smaller. There is a commitment to revisit that issue under any future public service pay agreement. It extends well beyond disabilities to many other organisations.so it is beyond us. I welcome it. The section 39 organisations used to argue that they found it really difficult to recruit and retain staff, particularly to retain them. They trained up staff, but then they left for pay reasons to go to section 38 organisations or the HSE. Given that the gap is quite small now, that migration has reduced significantly. It is very welcome. A significant amount of funding has been provided by the State and the Government to support that.

The Deputy's next question was on whether local authorities are building enough houses that are adapted and suitable. There is a menu of options, including Part V. We were keen that providers locally would engage with the local authority and with developers in order to ensure that in any development that is happening, there would be an element of universal design to ensure housing is available for people with physical and sensory conditions, people with intellectual disabilities and people with other disabilities as well. We need lots more houses, but there is very significant co-operation from the Department of housing and the Housing Agency in terms of getting on with that and building the capacity on it.

We were asked when we are going to get to a full level of residential respite. The capacity report identified that the need is enormous in this sector and committed to funding. That funding is being delivered. Under the principles in Article 4 of UN Convention on the Rights of Persons with Disabilities, UNCRPD, the aim is to deliver progressively over time, aligned with the maximum available resources. Each of my colleagues has spoken in terms of us pursuing in every area as much provision as possible for the resources that are available. There has been an unprecedented uplift of 20% this year. We have not had that in my lifetime and I have spent 35 years dealing with disabilities and mental health issues. It is absolutely fantastic. Our aim is to deliver based on that now. We will extend that to the maximum of benefit.

In terms of the Deputy's comment, I have tremendous empathy for those parents of the autistic children in Mullingar. We had a conversation earlier about the balance between providing emergency placements for children with complex disabilities and leaving facilities fallow but we have to do better. I hope to do better in my own region in providing those sort of complex emergency placements so that parents do not find themselves in that very difficult heart-rending situation.

It sounds like an impossible situation. Your heart goes out to their parents.

There are a number of factors that impact on being able to deliver an emergency response in that kind of situation. One thing that has to be mentioned is around regulatory compliance because of the amount of notice that needs to be given to the regulator, etc. Many years ago, emergency responses could have been considered through supported holidays and things like that.

The reality is because those were not regulated, they have really gone out as an option. Now, all of the provisions have to be regulated and as a result that can impact on the response to what are clearly crisis situations.

I will follow on from the question that has just been asked about alternative respite, homesharing and breaks. Mellany McLoone gave us quite a hopeful presentation that this will be expanded. I hope that despite the regulatory restrictions for that model of alternative respite, it might make a comeback.

I will ask about the housing piece before moving on to living in the community, personal assistance and personalised budgets in relation to inclusion and community living. I commend Clann Mór in County Meath which does phenomenal work. It told me its figures. It currently has 80 people awaiting residential support in County Meath and 50 school leavers from this year. I would be grateful for any information that the HSE can provide through the secretariat on placements there. The housing model in question is Bailis. If the witnesses want to explore that further, it is being provided in Johnstown, Navan, County Meath, through Enable Ireland, Cheshire Homes and Meath County Council.

In relation to personal assistance and personalised budgets, I think personalised budgets commenced as a pilot seven or eight years ago. Currently, they support quite a number of young people through Leap Ireland to live within their communities; in line with their strengths, such as artistic endeavours; or through day services, etc. Will the HSE give an update on the review? I think the NDA is reviewing personalised budgets. It works and it also helps to provide personal assistance. Where are things moving in that area? I will not say I am cynical but I spent 37 years working in healthcare. I had experience of the previous north eastern health board. The new structures are quite close in configuration to what we had 30 years ago. I appreciate using data in a different way, collating all of that and building the skill set to analyse it and make it current and future-proof, but one can appreciate that there is an element of scepticism from me because I have been here before and I am wondering what is coming. As personalised budgets and personal assistance work, they should be retained and built upon. What percentage is built in for that?

There is a significant increase in both personal assistance and home support this year. I will take the components of what would be provided within a personalised budget arrangement. We have a good number of providers and agencies. Everybody should support a personalised approach to services. There is a significant increase in personal assistance this year of up to 50,000 hours and just over 100,000 hours of additional home support. They will go to support individuals to remain and live in the community and actively participate in the community. We received significant funding for that. I will bring it up proactively that we also got an increase of €7 million to achieve a rate equalisation between the rate paid for personal assistance and home support for disability services versus that paid for older persons. It is critically important because before this there was a rate difference. With a rate difference, we found it very difficult to find staff because the providers were not able to pay the same. Now, the rate is the same so it is important. We have a working group on personal assistance. Department colleagues are just about to do a survey to get under the bonnet in terms of personal assistance but we have a long-standing history of working with key leaders in the disability sector and supporting independent living. Personalised budgets were a pilot. The review is with the NDA and the Department. The expectation is the review will be published in the second part of this year. That will inform the future. It is important. It is a model that runs in some parts of the world on an individualised insurance basis - it works in some instances. For some people it works very well but there are then the complexities of managing the implications of employing somebody and everything else like that. Our personal assistance definition affords latitude to people receiving personal assistance to recruit directly themselves or alternatively to delegate that responsibility to an organisation and the organisation will provide their personal assistant to them. Effectively, they still receive the support whether it is personalised or not. I would also like to mention homesharing. The Deputy touched on it. It is an important model. Our colleagues worked in 2025 to develop guidelines and standards around that. It is a significant piece of work. It provides a real-life opportunity for people to live in family homes for respite, short-term breaks and residential. We looked at other countries like Canada and the US where homesharing has worked very well but the guidance and protection safeguards are important. The work completed last year is important.

Will the HSE have enough staff to deliver the 50,000 hours of home support?

In the context of our rate increase, we should. That is the aim. It was a particular challenge in the past when we did not have the same rate as for older persons. Our ambition is that we should be able to.

Apologies that I was not here earlier. I was at another meeting. I apologise if my questions or similar were asked already. We have been looking a lot at supported decision-making. How are people supported in a residential setting? What are some policy changes that might be appropriate to improve living for people with disabilities?

As a clinician, I do a number of capacity assessments which are referred to me. Enshrined within the legislation is to ensure that when the capacity assessment is carried out, individuals are supported for the assessment to be of their best ability. Frequently, speech and language therapy colleagues are involved, for example to aid communication. You ensure there is accessible and easy-to-read information. You look for the least restrictive option; for example, you only recommend a decision-making representative if that is absolutely required. In some circumstances, a co-decision-maker, such as a family member, may be appropriate. That is enshrined within the legislation. It is what happens on a day-to-day basis.

The Senator asked how to improve lives more generally. I refer again to the integrated adult approach between day services and residential services. New Directions was published almost 15 years ago on day services and supporting people on an individualised basis with a particular focus on high quality. Along with the residential side of the services provided, regulation and HIQA's involvement, we have an outcomes management service improvement arrangement in our day services which for the most part extends across day and residential. There are 4,500 of the 22,000 day attendees or 9,000 residential places that are common. A person-centred plan is for the whole of life of an individual. It is geared towards providing the best quality of life for the individual that can be achieved. That is monitored through the regulator on one side and the outcomes management framework on the other. Notable in recent times is in that outcomes monitoring and management process, our colleagues in day services have included people with lived experience on the monitoring teams that go into other centres to monitor the quality of services. There is a key connection between the individuals receiving the support and a peer to ensure the quality of service is the best it can possibly be.

I want to ask about people moving into their own housing situation with support care. I know that there are reduced numbers. Are there any plans to expand on individual living or maybe some of the independent housing options?

There are, and we have referenced the suite of arrangements. It is for individuals moving from their own home whereby they can move straight into that. Our conversations with the local authorities are to look at Part V solutions to access accommodation and, where appropriate, to do so according to the design in the design manual. A22 provides for an independent living arrangement for an individual. The Catherine Day report has identified the innovation of providers, and a huge number of providers are very keen to support the life cycle and the movement of individuals towards independence and towards access to the community. There is a very strong focus on that.

First, if we could get those figures we spoke about previously, that would be helpful. I get that the solutions to people's living circumstances are very different. In a perfect set of circumstances, it is about ensuring that home care can be provided. We know the issues with getting home care. It is about adaptation to houses and that involves the local authority. I will give one example without giving any names. It is about a child with complex needs as they were getting older. One of the parents had become the carer, while the other was out working within the health service. They qualified for the maximum of the mobility aids grant and the housing adaptation grant but it was not going to cut the mustard. It was not a sufficient amount to pay for the care. There was a huge amount of over and back with the HSE, the local authority and disability services. When Senator Anne Rabbitte was Minister of State, she was very helpful, but it was a cattle ride to get this sorted and money was provided by the HSE. Sometimes, I am worried when I get a solution because I am not always sure I could ever deliver it again. There are plenty of circumstances where this is necessary and there needs to be a roadmap. Money needs to be set aside for these sorts of circumstances. I do not particularly care whether that is within the local authority or whether it is the HSE coming in, because it is a big saving for the State and for society. That is one very particular issue.

I also know a couple who bought a house. There is the incremental tenant purchase scheme or whatever with a clawback facility if it is sold, but the problem is they have a child with huge mobility needs and they cannot adapt the house. If they sell it, they will not be able to afford the sort of house they will need. They would be better off in council provision and it would get sorted even if it took some time. I want to ask about those two particular issues and what is proposed at this time? I hope that eventually there will be a roadmap for dealing with those circumstances.

I thank the Deputy for the specific examples. The first one he referenced is probably associated with families where the person who needs the support is slightly older but the parents are still working.

The child has got older and bigger and they have complex needs. There are added logistics.

It is a good demarcation. In the past, and prior to regulation policy, we would have had a life cycle of people working their way through residential services and capacity becoming available and somebody else would come in to fill that place.

Again, they are happy to have the child in the family setting. That is what they want.

Okay, so I will about speak to the child example first but for the slightly older person who would have come into a service, that capacity has been slightly restricted in recent times with section 38 and section 39 organisations, for a number of reasons. One is that the policy intent is to look for an improved service, which we all support. For staff who were available to support, say, four people at a location, or in a big congregated setting, there was a huge economy of scale but we are never going to go back there. We have also had the regulatory constraint on that capacity. This means that it is not there. The work we are doing with, for instance, St. Brigid's community network is geared towards looking to the section 38 and section 39 organisations to ensure that they look to extend capacity again, so that through the housing programmes and through their own work, they will be available through us to provide care.

I get that we need added capacity, and that is a very worthwhile point. On the specifics, particularly of my first example, the adaptation grant is not going to cut the mustard for what is necessary, and it is about whether the HSE has a pot of money. It has-----

Deputy, the time is up for your question.

I know. The ask is necessary.

Perhaps we need to think about this and come back to the Deputy in writing. I do not think we have a pot of money to put into people's own homes.

But we need it.

It sounds like a different thing. The adaptation grant would be for housing, and in general, the adaptation grant works well, but there may be individual circumstances such as those referred to by the Deputy.

No, it is definitely not enough. I have one last thing. This is about a person with very complex needs. They went through court proceedings in relation to the damage that had been done to them. They said that it would now suit them in a huge way to get into a residential care setting, but because of the money, they cannot get on the housing list. That needs to be addressed, because on that basis they cannot access HSE funding.

Our services are not means-tested on that front. I can appreciate the housing issue and the social housing list, but our residential services and other services are not means-tested, so there should not have been a barrier there.

There should not be.

What is the position of the HSE on the growth of private, for-profit services? These companies are able to buy properties with sums of money they receive for emergency placements, while the voluntary providers may be reliant on the rental market for a substantial number of their properties. The voluntary providers might have to invest €50,000 or €60,000 to bring a property up to HIQA standards and then have the risk of losing it because the landlord might decide to sell. Many of the properties owned by the private companies are scattered throughout the country and they do not seem to be part of any strategic plan for community integration. They are often not linked up to community supports. Is all of that not very much at odds with any kind of sensible long-term planning for residential services for people with an intellectual disability, having a major impact on the lives of disabled people and potentially being very uneconomical? Given that we have had such serious ethical and welfare issues associated with the privatisation of nursing homes, surely we need to put a break on the privatisation of disability services and begin phasing it out? I am under no illusions as to how complex that would be. It could not be done overnight, but surely we need to be providing much more substantial multi-annual funding to section 38 and section 39 services? Given their positions, are the witnesses agnostic on the Government's increasing reliance on the private sector for disability services or do they make the argument to Government that we need a more holistic public model of provision with clear benchmarks per community? How much choice do they have when deciding where to refer somebody who needs a placement? Is that very much dictated by cost?

Mr. Tully and I will answer this one, if that is okay. Regarding the financial model and so on, Mr. Tully's expertise would be really useful. There are a couple of important aspects to clarify about the private sector's role in the process. A healthy market would have a number of providers in it, from the public sector, the voluntary sector and the private sector.

My experience of providing oversight, reviews and assessments of people in the private sector is that where the private sector comes into its own is that it can be quite response. In those sorts of emergency-type scenarios, it is good to have another option on the table because they may be the only option on the table at times.

Is that not because we are not funding the section 38 and section 39 services sufficiently?

Yes, multi-annual funding is key in terms of enabling that. The issue of oversight, particularly clinical oversight, is really important because there are vulnerable people who are sometimes very far away from home. There has been a huge piece of work done around that since 2019 to ensure that people who are placed far away from home are assessed and regular interfaces are had with the local disability managers, who have commissioned those placements in the first place. We have a lot of information in relation to that. We have just finished quite an extensive report on one provider and we are about to finish a second very extensive report on another. My view from the clinical perspective is that they do have a role. Perhaps the vast increase in the reliance on the private sector is something that really needs to be considered and it is a concern, but even within that, they have a role.

Mr. Tully would have experience in terms of the financial aspects, which I think would be useful to hear.

Do the witnesses have an ideology on how services should be provided? Dr. Phillips mentioned earlier that there is a lot of fragmentation. It stands to reason that when so many services are involved, there is an increasing number of private companies. This is not to vilify private companies, but it just seems like such a hodge-podge of service provision. We just do not have a great record when it comes to privatising care for the most vulnerable. It often brings up very serious ethical problems down the line.

Our governance and how we organise this as part of what the HSE does is very well structured. We got our annual allocation through the budget and our letter of allocation. It sets out the numbers and what is required to be delivered each year. All of that funding is distributed to the areas on a population basis, so local people, who know the services and know people who need support, have the first call on how that funding is spent based on the guidance we give in terms of numbers. I think we have an extraordinarily well-evolved governance system in terms of our service arrangements and that commissions services and sets out very clear requirements for how services are delivered quality-wise, the quantum on staff and everything else.

Does Mr. Tully have a stance on the fairly exponential growth of the use of the private, for-profit sector? The percentage of provision from private companies has doubled since 2021.

Whoever delivers in that area, my primary ambition is that the service is high quality and close to home. I might have a personal allegiance to a voluntary organisation that I have been working with for a lifetime, but it is about whoever provides a high-quality service. We are doing another procurement framework for private providers, and we will look for value in that. With over 70% of services delivered by the voluntary organisations, we are in a strong position to say that we are still very much focused on the voluntary sector. The Catherine Day report, which I referenced, identified the value and benefit of voluntary organisations, but I would not eliminate private providers because we need them. One of the members asked if we have choice. In parts of the country, there were instances where we did not have a choice. There were also some financial funding deficits in organisations that presented a challenge to them but with the significant uplift we received this year, all of that funding has passed on to the organisations. They should be there or thereabouts in a position to work with us and hence the work with the federation on Brigid's Community as well, so that it will be very much back at the table to provide services. I do not have a personal preference otherwise.

We are wrapping up but does anyone else want to make a brief comment?

I think that it is important to reflect that we are committed to working with section 38 and section 39 organisations. It is about their capability. That comes in terms of the accommodation profile and the options they have, but also the skill mix they have in their teams. Some work with a social care model and maybe we need to adapt that a little bit to make sure we keep people in their communities. Work like that is ongoing and, certainly, it is really important that that commitment is there.

I thank everybody for their contributions. I propose that we publish the opening statements on the committee's website. Is that agreed? Agreed. I thank everybody for attending today and for their insightful contributions. It will be helpful to us when we produce the report at the end of our discussions.

With the agreement of the committee, we will go into private session to deal with some housekeeping issues and other matters. Is that agreed? Agreed.