Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Apologies have been received from Deputy Moynihan. The purpose of the meeting is to resume discussion of the rights-based approach to day services. I extend on behalf of the committee a warm welcome to representatives of St. Michael's House: Ms Liz Reynolds, chief executive officer; Ms Tara Molloy, director of support services and interim director of quality and risk; Mr. Diarmuid Devereux, director of estates, and Mr. Jim McCaughey, director of finance.

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 of it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. Therefore, if witnesses' statements are potentially defamatory in nature in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

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 by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex to participate in public meetings. I ask any member participating via Microsoft Teams to confirm prior to making a contribution that they are within that complex.

I call on Ms Reynolds to make her opening statement.

Ms Liz Reynolds:

I thank the Chair and members for the opportunity to discuss a rights-based service approach in disability services. I am aware the committee has heard from several disability organisations and the National Federation of Voluntary Service Providers, of which St. Michael’s House is a member. We are confident that many of the opportunities and challenges with regard to rights-based disability services have been presented and discussed. Today my colleagues and I will focus on St. Michael's House and we are proud to represent this organisation. It is important to note that any discussion about rights-based services should involve the people who use services. We would have liked to have had an opportunity to support individuals to present to the committee today, but more time was needed.

St. Michael's House started with one facility in 1955 and now provides services and supports to people with disabilities, primarily with intellectual disabilities and-or autism, and their families and supporters in the greater Dublin area. We provide a range of services and supports to more than 2,300 service users, which includes 1,366 children with complex needs. We employ more than 1,800 staff across a range of roles and grades, including direct support workers, social care workers and leaders, persons in charge, nurses, doctors, managers, clinical staff, administration, ICT, transport, education and training and maintenance. We are primarily funded by the HSE. In 2023 our HSE allocation was €116 million and our total annual turnover was €133 million.

St. Michael's House is a section 38 organisation operating within a complex environment and with an ever-increasing demand on services and supports. This requires that, in our day-to-day work, we must comply with all legislation, demonstrate evidence of compliance, participate in national policy implementation and, above all, ensure the work contributes to the quality of service delivered to service users. Individuals who use our services have been supported to complete Assisted Decision-Making (Capacity) Act training delivered by National University of Ireland, Galway; and St. Michael's House developed our own specific training through our open training college for front-line staff and managers. There are processes in place that will support decision-making, including the person-centered planning system and communication plans.

In 2021, the Minister for Health, Deputy Donnelly, and the Minister of State with responsibility for disability, Deputy Rabbitte, announced the strengthening disability services fund to improve the lives of people with disabilities.

In 2021 Minister for Health, Deputy Stephen Donnelly, and Minister for Disability, Deputy Anne Rabbitte, announced the strengthening disability services fund to improve the lives of people with disabilities. St. Michael's House, SMH, was successful used this funding to work towards an active rights-based culture within SMH. This was with a particular focus on the UNCRPD, Articles 12 and 19, and the necessary supporting structures to implement this successfully. There were three strands to this project, which commenced in September 2022. The first was total communication training, the second was specific education and training inputs on rights for service users, families and staff, and the third was a volunteer programme to support service users.

SMH operates a dispersed model of community-based health and social care services in more than 200 locations, which include 77 designated centres registered with HIQA which support 384 service users; 6,324 respite bed nights per annum across three centre-based respite services; 450 adults in residential community supports or individual services; 49 day support services providing services to more than 800 people; and 13 ASD specific day services providing services to 61 people. We have adult clinical services, which include catchment based MHID services; network based children's clinical services through four Children’s Disability Network Teams, CDNTs; and catchment-based CAMHS intellectual disabilities services. We have six special national schools that are under the auspices of a patron group of the board of directors of SMH.

Within the current strategic plan of SMH 2022 to 2026, the service model is one that places the service user at the centre of the organisation and all that we do. The first and primary goal of our strategy is to continue to build on the person-centred approach and move towards the delivery of services based on rights. Through work on personal and public involvement, PPI, as well as our own consultation process for the development of our current strategic plan, we have identified the need for planning over the life cycle of the individual. This is particularly around living arrangements, family circumstances, daily activities determined and chosen by the service user, additional therapy inputs and the delivery of respite services. There is an absolute requirement to work in partnership with parents, family members, friends and supporters in planning for service users’ life cycle based on the will and preference of individuals. This can be challenging for aging carers who are waiting for increased respite or residential services. There are more than 170 carers linked to SMH services, who are over the age of 70 years, at home with adult children.

SMH operates primarily in the Greater Dublin Area, which according to the most recent census data, will see its population increase by just over 400,000 by 2031. The Central Statistics Office, CSO, states that this increase will account for two thirds of the total projected population growth in Ireland over this period. In the period 2018 to 2028, people in the age group of 18 to 29 years seeking adult supports and services, will increase by 137%. The known profile and support needs of this population is complex. Those are either increasingly medically frail, arising from increased life expectancy associated with improved health technologies, or increasingly complex behaviours of concern with associated intense clinical and family support and interventions. The complexity and medical frailty of the profile of children supported during this period has increased, with more children surviving to adulthood with complex medical conditions and disabilities, who would not have survived in the previous decades.

For children and young persons, in addition to Article 7 of the UNCRPD, our policy and approach to the delivery of services to children and young people is governed by the progressing disability services of the HSE. At present, the teams identify significant requirements for interventions from families on the waitlist. The ability of teams to address waiting lists will only be addressed in full with additional resources that reflect growing populations and significant clinical complexity. The outcomes for children and young people will be greater when the services that CDNT interface with are suitably staffed and resourced.

SMH is a patron to six special national schools and one satellite school across north and south Dublin. The total school population is approximately 316 children. Five of these schools are involved in capital development projects, which will see an increase in capacity over the next several years. Children accessing the SMH schools, are children who will require day services to meet their fundamental need for occupational participation and social engagement. Every year, this transition point presents a challenge for families, the HSE and SMH. The uncertainty in where they will be able to access vital day services can cause distress each year. It also creates a significant clinical need to support families through this period of uncertainty, which impacts on the overall capacity of the CDNT.

SMH faces ongoing challenges to secure fit for purpose premises that meet the needs, will and preference of individuals for day, respite and residential services. As needs change, we are limited by the lack of suitable housing opportunities in the community that are accessible for all. Moving existing day services or creating new services in premises that meet the requirements under New Directions, requires significant investment that is subject to finding suitable premises in the first instance. In addition, legacy issues with old buildings, for example fire safety upgrades and energy upgrades, are extremely costly to rectify.

SMH operates in the current context of limited funding and increased demand and expectation. There is an unrealistic expectation on a voluntary board to assume accountability in the absence of a credible and agreed funding model that covers the actual cost of service delivery, as well as a model that is flexible to adapt for changing needs of an aging cohort of individuals and their will and preference. Within our existing allocation and service expectations, there is an existing unmet need for school leavers. There is one from 2020, three from 2023 and four for the current year. There are 84 residential service users without appropriate day places. There are seven external referrals and there are 84 individuals on our residential priority waiting list. For our respite waiting list, there are 50 adults waiting and 27 children. There are 45 individuals on our transport waiting list.

In 2017, the HSE identified the high levels of complexity within services and the demand that was expected to increase within SMH. Since then, demand has continued to rise from sources both within and outside SMH. Service users and their families are aging, and as they grow older their needs change. In the context of the complex needs of an aging service user cohort and aging carers, more children and young adults with intellectual disabilities are being identified with a range of complex needs. Once accepted into adult services, individuals tend to stay with SMH from 18 years to end of life.

Within residential services in SMH, the average age is now 54 years, with aging and changing needs as significant drivers for additional staffing requirements. People with intellectual disabilities are living longer, with increasing numbers of people advancing into older age. This welcome shift in demographics provides opportunity for people with intellectual disabilities to play more active, meaningful roles in our society, but it also creates challenges in delivering appropriate rights-based care and services for older individuals with intellectual disabilities. A recent study of dementia risk for those with Down's syndrome, showed that 23% of those aged 50 years and over, and 80% of those aged 65 years and over, will develop Alzheimer’s dementia.

SMH assumes the burden of costs associated with acute admissions and hospital presentations. In cases where a staff member is required to accompany an individual, there is a cost implication by reducing the staff allocation in the residential house, that may only be filled by agency staff. In 2023, SMH supported 250 presentations to an emergency department and admissions, with almost 1,600 in-patient night stays from across 65 residential houses. The primary reasons for service user presentation included neurological, respiratory and gastrointestinal, and there were 34 elective admissions. We anticipate that this cost associated with service users accessing the acute sector will only increase as service users age. This has a direct impact on our ability to provide services according to the will and preference of individuals.

While there are many opportunities when providing rights-based services, there are several challenges regarding recruitment and retention of appropriately trained staff, as well as positive risk taking, balancing risk and safety, and translating human rights principles into everyday practice. Service providers can become conflicted between promoting people’s rights while maintaining standards of ‘safety’ and ‘care’. None of this is an easy path to navigate and at a management level, this can be a complicated conversation to explore, but it is one we are committed to progressing. Rights-based services for people with disabilities are essential for promoting equality, dignity, and social inclusion. SMH is one of many organisations that make significant efforts to enhance the quality of services provided to this population. There are opportunities with the adoption of a human rights-based approach to service delivery, as we improve the quality of services and supports by protecting, promoting, and supporting the rights of people with disabilities, and training staff to support individuals with this approach.

St. Michael’s House is committed to this path, recognising the challenges and opportunities it presents. We call for continued dialogue, collaboration and investment to make this vision a reality, ensuring that every individual we support can live a fulfilling, self-determined life.

I thank the committee for the opportunity to present to it on behalf of St. Michael’s House.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Ms Reynolds. I invite members of the committee to put their questions. When I call members to speak they should adhere to the agenda items scheduled for discussion. I will call them according to the rota.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank Ms Reynolds and her team for coming here. St. Michael's House has a vision of a society in which people of every ability can live the life of their choosing, a rights-based approach, which is the right approach. It covers a wide range of different areas. In my experience, St. Michael's House does a marvellous job in a very difficult area.

I was curious about the reference to the growing and ageing population. Are we ready for that? Do we have the necessary resources to deal with it? What resources do we require? I want to get an idea of where we are in that regard.

St. Michael's House is the patron of six national schools and one satellite school in north and south Dublin. How can education and health work better together? What protocols are in place for these sectors to work together?

We heard how five schools are involved in the capital development projects. I am curious about that. I know that St. Michael's House was building six extra rooms at its facility on the Ballymun Road for respite and residential. I do not know what point that project has reached because it is a while since I checked. Ms Reynolds might fill me in on that.

The complaints procedure seems to be a problem for individuals and their rights. If a local complaints procedure does not work, the issues cannot go forward to an independent arbitrator which is difficult for some people. How does that procedure work?

There is a lack of staff for the CDNT. Did the ban on recruitment have any effect? St. Michael’s House is a section 38 organisation and its workers are classed as public servants. I do not know if the ban had any effect so I am curious about that.

In June 2023, an issue arose when 13 young adults were offered places and that decision was later rescinded due to a lack of staff and suitable facilities and a long waiting list. That was the argument made at the time. Has that been addressed? Is it possible that similar issues will arise again?

Ms Liz Reynolds:

I thank the Deputy for his kind words about St. Michael’s House. We are very proud of the services and the staff who work with us. I will leave the question on capital for schools to my colleague, Mr. Devereux.

I can only speak for St. Michael’s House on whether we have the resources and if we are ready for the change in need. We are doing our best with what we have. What is needed is an agreed model of service provision that is funded appropriately and that can react to changing need, especially with an ageing cohort. We need that flexibility and a recognition of changing need, as well as a recognition that we cannot continue to do more with the same or less.

As I said, we have schools which are independent under a patronage group of the board of directors of St. Michael’s House. My experience of how education and health work together is that there are areas of that in which we could all improve. Service providers, and St. Michael’s House is no different, can feel we are in the middle of that relationship so we would welcome any dialogue that would ensure the two Departments work together with service providers in the future.

As a section 38 organisation, we follow the complaints procedure that is designated nationally. We have a complaints procedure. We do not always get everything right. I assure the Deputy that service users voice their complaints in a way that gets to the executive. We have a service user forum to hear issues from service users. In relation to family complaints or complaints from staff, all those procedures are in place. We record them and report them to the HSE on a monthly basis. We also report compliments although we might not record all the compliments that we should. I meet families regularly. I have communicated to parents and families about coming in and meeting me if they wish. Many families have taken that up and from that there have been complaints.

On recruitment to the CDNT, the Deputy will be aware that recruitment of a specialist multidisciplinary clinical team is a challenge throughout the country and not just for St. Michael’s House. However, our four CDNTs have approximately 82 whole-time equivalents in total and we have 64 WTEs in place so our vacancies are not as great as some others, although there was a time when the number was own at 48 WTEs in place.

The recruitment pause is having an impact on management and administration. CDNT staff are on the front line so there is a derogation for them. We have been able to fill front-line posts, including those on the CDNT team. However, the derogation process did prevent us from taking in people as quickly as we would have liked because of a requirement to fill in numerous and onerous forms to align with the derogation process. Happily, in the last couple of weeks, the HSE has stated that we are no longer required to fill in those forms for derogation.

The last question was on the 30 places rescinded last year. That was a complicated process. Effectively, St. Michael’s House and the HSE should have communicated to families earlier. We did what we had always done, which was to hope that premises would appear – we would get premises, funding for capital and staff - but it became evident at a time that we would not be able to accommodate all those referrals. Formal offers were never given but we were not able to accommodate all those referrals. I can say that we did take on people last year. I understand from the 30 referrals that the HSE referred to other providers. I do not know the outcome of that.

I will pass to Mr. Devereux on the capital project in Ballymun.

Mr. Diarmuid Devereux:

For clarity, I think this relates to the day service we were trying to create late last year.

Dessie Ellis (Dublin North West, Sinn Fein)
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Yes.

Mr. Diarmuid Devereux:

That related to an existing day centre we had in Glasnevin. Those works were completed late last year. The centre was opened in January 2024 and is fully operational. It was an upgrade of an existing centre to create additional capacity for people with high-support needs.

Dessie Ellis (Dublin North West, Sinn Fein)
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At the time, I had a person who was waiting on that, which is why I raised the issue. I was not sure how that had proceeded since.

Fiona O'Loughlin (Fianna Fail)
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I apologise for being late. I was held up at another meeting. I have some experience of St. Michael’s House from the Special Olympics. It has a really good programme. I worked as a volunteer with the Special Olympics at one point and then with the 2023 World Games with Mary Davis who used to work with St. Michael’s House. It runs a very good programme, on which I commend it.

We are looking at the whole rights-based area now, which is an important one.

I have a brother who is a service user in Kare in Kildare and I am conscious of the need for him to have the opportunity to voice his concerns, wishes and desires. I am interested in hearing about the consultation that is carried out by St. Michael's House and the policy with regard to decisions that impact service users. Ms Reynolds might talk just a little bit about that in regard to both the consultation with the service users and with their families, because families are impacted as well.

Choice is key in moving to a rights-based service delivery. How is choice realised within St. Michael's House disability services? I also wish to ask about the availability of independent advocacy for service users. How does St. Michael's House deal with that?

Ms Liz Reynolds:

I thank Senator O'Loughlin for her kind words about St. Michael's House. I am delighted to hear she worked as a volunteer. That might help boost our volunteer programme, which we commenced recently, so I thank her for it.

In regard to consultation, we are moving towards services that are about participation. Our number one primary strategic goal is to have a rights-based approach. Our second focus is on participation. There are a number of strands to that. Some of it is about what lots of service providers, including Kare and St. Michael's House, do in terms of the local team and the person-centred plan of an individual, which is done on a local level. There are meetings with service users to voice their concerns, their level of happiness and their wishes. There are house meetings, and meetings locally in day units, etc. That is normal practice.

As I said, we want to move towards participation and that involves things like the PPI framework, which is one that is moving to participation in research on social and health services. For example, in research, it would not be research on service users, it would be research with or by service users. We are moving to that. We have done a lot of research on PPI, although I am not an expert on the subject matter. The next phase of that is to implement it in St. Michael's House and we are doing that.

As regards advocacy, that is in various strands, and it is in place throughout St. Michael's House. We have a strategic plan for St. Michael's House. We established a service users forum to ensure that the voice of the service user is heard at an executive level. We have learned lots from it since we started the process. We have met a number of groups, initially on Teams, and then in person. A lot of issues and themes were established from meeting with service users in those groups that feed into our work plan - our annual service plan - and also our strategic plan.

In terms of participation with families, we have developed training with the strengthened disability funding that is open to staff and family members. We have opened that out to family members. It is predominantly about right-based services. Families are part of the services in that they can come and talk to their local service.

Fiona O'Loughlin (Fianna Fail)
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I thank Ms Reynolds. The person-centred plans are important. I do not know how often they are made or reviewed but I am sometimes concerned that while the PCPs are done and actions are recorded - I am not saying this about St. Michael's House, but from experience with other organisations - sometimes the agreed actions are not carried out and nothing happens until the next PCP. How often are reviews done? Does the service take the opportunity to go through the goals set for a person on an annual basis, and the actions that must be put in place to help them achieve their goals?

Ms Liz Reynolds:

I will pass that question over to my colleague, Ms Molloy.

Ms Tara Molloy:

In St. Michael's House we have what we call an assessment of need for every service user. It covers every aspect and activity of daily living for service users. They are reviewed annually, but if something changes for a person a review will be done if that is needed. Part of that is the person-centred planning system. There was a lot of consultation. We have an advocate and we have other people in the equality department who manage that person-centred planning process and the consultation with service users. They wanted that to be called "All about me". There were good conversations. It became all about the person.

In terms of timelines, it is very different for each individual. For one service user it might be very realistic to set three goals to be achieved within a certain timeframe, but for other services, it could be a case of one goal for them to attain within a year. It is not a set approach that must be done in a year. It depends on the goal, and on the person. The plans are definitely reviewed.

Fiona O'Loughlin (Fianna Fail)
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I fully appreciate that. In the setting of the goals there must be an understanding of the capability of the individual and other circumstances that might help or prevent the goals being realised. The conditions must be put in place between the family and service provider to enable the goals to be reached, for example, if a person wants to take swimming lessons or to get an ATM card to use. Again, this is not my experience of St. Michael's House, but in some organisations realistic goals and ambitions are set down that are very much person-centred but sometimes nothing happens until there is another meeting involving family members, the service provider and the individual. They can look at a whole new different set of goals without having put a roadmap in place. The subsequent roadmap is every bit as important as setting the goals. In an unwieldy way, that is what I am trying to say.

Ms Tara Molloy:

We are talking about rights here, so if we are looking at the rights of the person, the goals are set based on what they want.

Fiona O'Loughlin (Fianna Fail)
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Yes, and on what they can achieve as well.

Ms Tara Molloy:

Absolutely. The goals must be achievable. It depends on the level of disability and what people want. It is about having realistic goals. There is no point in having something tokenistic that is never going to be achieved. We do consult with parents, but this is about the person. The majority of our service users are over 18 and if we are going to follow the ADM process and other rights processes then we must look at their choices. The choices are realistic. Everybody in St. Michael's House has a key worker. They work with that person until those goals are either achieved, but if they realise they cannot be achieved, there is a change in direction or, as Senator O'Loughlin says, the pathway.

Fiona O'Loughlin (Fianna Fail)
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I fully agree that it should be about the person but in instances where, for example, there might not be public transport, there needs to be family involvement to realise the goals on a practical level. It is sometimes about overcoming those hurdles and ensuring that all of those areas are taken into account. I thank Ms Molloy for her response.

Tom Clonan (Independent)
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I thank the witnesses very much for coming in this evening. I have a number of questions for them. In the evidence, a number of significant challenges were set out for St. Michael's House. It was stated that the number of individuals in residential settings is 450. If I heard correctly, in the coming years an increase of 137% is expected. I do not know over what time period the 137% increase is expected, but my pass leaving certificate maths from the early 1980s suggests to me that there could be as many as 900 people in total. There are already 80 people on urgent waiting lists. Could the witnesses quantify the forecast for the coming years? For example, in five years' time do they expect there would be another 450-plus people requiring urgent accommodation on top of the 84 who are already waiting?

What is the forecast? What is the capacity of St. Michael's House to meet it? Has the organisation sought a funding programme which is matched to this predicted forecast?

How many facilities and accommodation centres are planned to be built in the next five years? For example, there are 170 ageing carers. I could be wrong but I imagine this somehow matches the 84 people who require urgent accommodation. This means accommodating a lot of people with ageing parents. I know from having lost my parents that events can move very quickly, especially when people are caring for an adult child with complex needs. People die all the time. If this is urgent, what is being built? Does it match the requirement plus the predicted 137% increase?

With regard to this predicted increase, our population has increased by 1 million since 2004. That population expansion will continue. We are getting new citizens from all over the world who have complex needs. I have a large volume of correspondence from people who have no resources whatsoever in this regard, many of whom are homeless. With regard to the capital programme, Ms Reynolds touched briefly on recruitment and retention. Is there a realistic HR recruitment programme in place to upscale and recruit the correct number of staff to deal with this massive increase of people in the population who require support and services?

Is there something the committee can help St. Michael's House with? Is there a requirement for the Government to step up and exponentially increase the investment in St. Michael's House? The organisation is asked by the State to provide these services. Reading between the lines in the presentation I sense it does not have sufficient investment or resources to meet what is required. Is there a number or headline figure the witnesses would put out to state that in an ideal world this is how much it would need on an annual basis to adequately resource and support these families?

I receive a lot of correspondence about respite and it has been reported in the mainstream press recently. Respite is not readily available to families. My situation is different from that of those towards whom the services St. Michael's House are oriented. In 20 years I have never had respite. I have had not one day or not one hour. How does the organisation plan to expand the respite that is available?

I apologise for the number of questions I have. There is no implied criticism in them of anyone in the room. Transport is an issue that comes up over and over again. I have a nephew with Down's syndrome in south County Dublin. He has no transport to his day service. As a consequence he does not have a day service. We are all forced to work. There should not be the idea that there is somebody at home who can bring somebody to a day service. In his case, that day service would involve a daily commute of three hours. If service users do not have transport, they do not have a service. If we are speaking about a rights-based approach, transport has to be provided. I invited a guest, who could not attend, who has no transport for their child.

The opening statement mentions that in addition to Article 7 of the UNCRPD St. Michael's House's policy and approach to the delivery of services to children and young people is governed by the progressing disability services policy of the HSE. The HSE has come before the committee and stated on the record that the policy has failed. Therefore, there cannot be policy predicated on something that has failed. We have had on the record from the CEO of the HSE that progressing disability services is in failure. In recent weeks we have also had evidence presented to the committee from researchers that shows there is no evidence base for progressing disability services. It was never signed off by a clinician or risk assessed. It is having incredibly negative outcomes for children and adults throughout the State. Who is accountable for this? I do not know.

In this context I have a difficult question to ask. St. Michael's House states it has school leavers who are being failed, with one from 2020, three from 2023 and four from 2024. There are 84 people on the list of those who do not have an appropriate day service. There are 84 people on the residential priority list. There are 50 adults and 27 children on the respite waitlist . There are 45 people on the transport waitlist. For St. Michael's House trying to provide this service in good faith, and I trust in its complete integrity and utmost good faith, if the HSE tells us that progressing disability services is a failure, would the witnesses described the situation that confronts St. Michael's House as a worst-case scenario? Is it also failing? Is it in crisis or acute crisis? Is there a requirement for intervention? Do the witnesses think everything is as they would expect in any other jurisdiction? Are we outliers in this regard?

What happens when these elderly parents die? What happens to those adults with complex needs? Where do they end up? Are they involuntarily detained under the Mental Health Act? Do they end up in the emergency department? Are they placed in nursing homes? Where do they go? What happens to them?

Ms Liz Reynolds:

Senator Clonan has raised a number of issues. I will pass on to Mr. Devereux for the questions on the premises and to Ms Molloy for the questions on transport. The 137% increase was a reference to the CSO, which stated that the number of people aged between 18 and 29 seeking adult supports and services would grow by this amount between 2018 and 2028. For us in terms of the waitlist, the forecast is 130 to 150. There is no way of knowing for sure. These would be referrals. At present, it is subject to vacancies arising in our residential services. What we see more and more is that need does not always match the vacancy. People in a designated centre are in a house regulated by HIQA. Thankfully, the days of admitting somebody into a bed are gone. There is consultation with the individuals who live in the house. There is choice. If there is a vacancy it is typically because somebody has died so the people in the house need time, like the rest of us, to process this bereavement. Finding an appropriate premises that meet what at times can be very complex needs is a big challenge. Mr. Devereux will speak about this.

The funding programme is reactive.

Tom Clonan (Independent)
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I apologise but will Ms Reynolds confirm that the number with regard to 130 to 150 people between now and 2028 is extra on top of the 84 on the waiting list for St. Michael's House and that in total the number would be 230?

Ms Liz Reynolds:

Yes.

Tom Clonan (Independent)
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Does St. Michael's House have the capacity to meet these needs?

Ms Liz Reynolds:

No.

Tom Clonan (Independent)
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How would Ms Reynolds characterise this? Is it failure in slow motion?

Ms Liz Reynolds:

I would characterise that as we are unable to meet the current level and future level of demand. That is something we have highlighted on many occasions. We need not only a responsive funding model to meet the emergency placements and planned places but also appropriate accommodation.

If individuals are in their 70s and caring for adult children, one can assume that, in many cases, those adult children will be in their 40s or 50s. They can have unique needs as regards a residential place. They may need ground-floor accommodation or accommodation that is wheelchair accessible. There may be behaviours that mean the individual can only live with one other person. It is very individualised. We operate with great demand and high expectations and we are struggling to meet current demand. I do not know if that answers the Senator's question.

Tom Clonan (Independent)
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It does, yes. I am sorry to push this point but who can the service appeal to in this regard? Is it beholden to the HSE, the Department of Public Expenditure, NDP Delivery and Reform or the Minister for Finance? Where is the blockage? Where should this funding be coming from?

Ms Liz Reynolds:

Our funding comes predominantly from the HSE. That is the agency we link with. I will let Mr. Devereux answer with regard to buildings, premises and CAS funding. The funding programme the Senator talked about is reactive. If there is a vacancy and there is somebody on the waitlist, the clinical team engages to see whether that vacancy would suit that individual and a period of transition or assessment commences. It is a long process. It is not like the acute sector where it is one in, one out. It is a process. It can take quite a length of time in some cases.

Tom Clonan (Independent)
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At least the committee now knows St. Michael's House is expecting these numbers between now and 2028. We have to make a lot of noise about that.

Ms Liz Reynolds:

Furthermore, while there are vacancies in some of our residential houses, they may not be suitable for places at all if they are on the first floor and the majority of people on the waiting list require ground-floor accommodation. Many of the vacancies become null and void based on current demand. Mr. Devereux might talk about the premises now.

Mr. Diarmuid Devereux:

I will address the non-residential units first. The Senator touched on both. On day centres, St. Michael's House has a five-year properties plan and has invested heavily in our existing premises. There are a number of legacy issues and HSE estates in CHO 9 has been extremely helpful and supportive. There are very significant challenges in providing fit-for-purpose centres for the provision of day services, especially for people with higher support needs. It is about having centres that are integrated into the community and inclusive and about moving out of industrial estates and things like that and into other areas. We are finding that places like retail parks and business parks are not suitable for the provision of day centres. It is extremely challenging to find suitable places to operate our services from. However, we developed four ASD centres last year. Deputy Ellis referred to this previously. We have another eight new centres in the pipeline in the moment and a further six of our existing centres are being upgraded to provide additional capacity. Finding locations that are fit for purpose is challenging, however.

I will try to answer the Senator's question on residential properties. Are we going to meet requirements? I do not believe so. I do not think any service provider is. The main reason is that it is so difficult to find suitable accommodation for community housing. Sourcing independent living units is also challenging but it is easier. In trying to find community housing, especially in the north Dublin area, we see an awful lot of high-density developments, that is, high-rise apartment blocks and high-density housing estates. Community housing is very bespoke. It involves a number of people living under the one roof, supported by staff. Buildings of quite a significant size are needed and these should ideally follow the principles of universal design for housing or the IWA's best practice access guidelines, which are quite bespoke and quite different from the standard social housing model.

Tom Clonan (Independent)
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Bearing in mind that we might need accommodation to meet the needs of 230 people, looking in his crystal ball, what percentage of that need does Mr. Devereux believe we will meet by 2028? Does he think St. Michael's House will be able to cater for 10, 50 or 100 of those people?

Mr. Diarmuid Devereux:

We have a CAS application in for two houses in Ballymun, which could accommodate six people, and a further CAS application has been put in for one person in Donaghmede, so that is seven people. The HSE is assisting us with a project in north Dublin that would accommodate six people so that is 13. Those three projects have been on to go for about a year and a half and we have not started construction yet. I believe it will be a very small percentage.

Tom Clonan (Independent)
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I thank Mr. Devereux for that frank response. I appreciate it. I thank him for all of the hard work he is doing under very difficult circumstances. On the issue of human resources, where can we put pressure to help with respite and transport? What happens to people when their parents die? Where do they end up?

Ms Liz Reynolds:

On HR, the committee will have heard a lot from section 39 agencies on the particular challenges in that sector. We have challenges ourselves. We are all recruiting for the same people. The sheer numbers we require are not there. We require increased places in university for specialist clinical staff. We are working with the national federation on a campaign to promote the disability sector as an attractive career path or place to work. That is a challenge. In some of our areas, there are behaviours of concern that pose a risk to staff. It can be challenging to get staff to work in areas where there are very complex behaviours. We have gone to the UK. We are continually recruiting. We are focusing on retention. We are barely keeping our head above water. Employees are moving around and moving to different organisations.

The Senator asked whether there was a requirement to step up and whether we had what we need. It is evident that we do not have what we need. What we need to maintain current sustainability is an uplift of almost 10% in the HSE allocation. We need significant investment in ICT and transport. I will let Ms Molloy talk about transport. On ICT, there has been underinvestment for years. Our systems and processes are very manual. Apart from that, we require a €2 million investment in ICT security and a spend of €1 million thereafter. The third thing we need is for new services to be funded in full. The actual cost of service delivery, including staffing, employer's PRSI, non-pay expenditure, clinical staff and transport, needs to be fully funded. We should not be expected to take on new services without that full funding. That is what St. Michael's House needs. As to whether there is a need to step up, we are a member of the national federation and, with the federation, we are calling for the disability action plan to be continued and fully funded over its lifetime.

Respite is a significant issue. The Senator will have seen that there are waiting lists for St. Michael's House. Years ago, there was respite with each service provider. Each service provider had a given number of respite houses. This would typically comprise residential respite and some alternative types of respite. However, in the CHO area we operate in and some other CHO areas, there has been a move away from respite per service provider and towards a more regional system whereby those most in need or of the highest priority get that respite. When there is funding available for a new respite facility, everybody is asked to tender. We have tendered in the past although we have not won those tenders. There was recently a tender for which we were not eligible because it was not focused on people with an intellectual disability. It was for disabilities in general. We would therefore be expected to operate a facility that, in theory, would not involve service users' families receiving respite from St. Michael's House. That is beyond St. Michael's House.

As to what happens when elderly parents die, it is reactive. Every month, we highlight those at home who are at risk. We do our best to plan for those occasions when people will really need a residential place or whatever it may be.

Sometimes it works when there is a vacancy, but other times it is an emergency situation and a crisis. This includes situations where individuals go into the acute sector. It is appalling for the service users, the staff and everybody involved. The acute sector obviously wants its bed back, and then we must typically cost a residential placement. If we do not have a suitable vacancy, which is often dependent on the appropriate environment, those individuals may sometimes be placed with private providers. There is no point in pretending otherwise to the committee. Sometimes we can accommodate a person, but I have been in the sector at an executive level for 20 years, and more and more, it is becoming an emergency response. We work very well with the HSE. I am not trying to throw it under a bus because everybody is doing their best, but that is the reality of the emergency placements.

The Senator asked about progressing disability services, PDS. He mentioned that the CEO of PDS stated that it has failed. As the CEO of St. Michael’s House, I have not received a notification that PDS has failed. We are continuing with it. We work locally with the HSE. We are involved in the governance and we are following the roadmap for PDS. That is all I am aware of.

The Senator asked if we are failing. When I speak with parents and when they ask me what will happen when they die, I must say to them that I do not know but that we will do our best when the time comes. Certainly, that feels like a failure. Yet, I can assure the Senator that we are doing our best.

I will ask Ms Molloy to respond to the question about transport.

Ms Tara Molloy:

We do not offer transport per se to every service user who attends a day service in St. Michael's House. We look at the cohort that probably needs it most, such as our wheelchair users and people who cannot independently get on a bus to their day service and cannot use public transport. We have continued to offer that service. Transport is a national issue because it is not funded, but we have continued to offer the service to these people. We currently have approximately 221 service users on 33 routes, so there are quite a lot of buses. We have outsourced the majority of those to a regulated third party, and that works quite well. However, we must remember that these bus services will need the right people on them, and that includes a driver and an escort. We make sure they are trained. We meet them before they even start to drive for us and before they escort our service users. It is quite a bespoke service and, as I said, it is unfunded. We have looked at the waiting list. If we were to offer the current cohort on the waiting list, and if we were to outsource it, we would be looking at approximately €3.5 million per year. It therefore significantly adds to our deficit every year. It is an annual-----

Tom Clonan (Independent)
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What is the budget for what St. Michael’s House does provide at the moment?

Ms Tara Molloy:

What do we currently spend? I would say it is anywhere between €2 million and €2.5 million.

Tom Clonan (Independent)
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In other words, in order to meet the need, one would need to double that figure.

Ms Tara Molloy:

I would need to increase the number of routes to approximately 37.

Tom Clonan (Independent)
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That would probably explain the volume of correspondence I get-----

Ms Tara Molloy:

Yes.

Tom Clonan (Independent)
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-----and our own family has had the experience of there just being none.

Ms Tara Molloy:

We get multiple complaints from families.

Tom Clonan (Independent)
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I will finish now because I do not want to keep the Leas-Chathaoirleach any longer. I really appreciate the representatives’ responses and their candour. During the financial crash, we got intellectual honesty from the banks to a certain extent, because they put their hands up, said they had failed and said that we needed help from outside the jurisdiction. We handed our financial and fiscal sovereignty over to the troika and we paid for that because the debt was socialised. All of us - our children and our grandchildren - bailed them out. Despite the fact that my friends in the EU characterise the situation as them bailing us out, it was us who bailed them out. We are still paying for it. One consequence of that is the lack of investment and funding that is being experienced by St. Michael’s House.

In the same spirit of intellectual honesty, if we are to take a rights-based approach, it behoves us to accept that the system is failing families because of the reasons the representatives have articulated here, although I do not say that St. Michael’s House has failed. This is therefore no criticism of St. Michael’s House and I do not assign any blame to anybody in this room. Yet, as a committee, it behoves us to really hammer home to Government that what we have had for the last ten or 12 years is not good enough. If we are going to meet our commitments under the UNCRPD, if the Taoiseach follows through on his promise to ratify all the protocols, and if we are really to adopt a rights-based approach, like everything else, we have to pay for it. If we are prepared to pay for bankers’ debts, then this is a very modest ask.

I thank the representatives very much for their answers. A huge volume of correspondence is coming in about unmet need, whether it is the case of services for children being cancelled at the last minute, or about how every year parents have to campaign to have services retained for the children over periods. It is disheartening. I thank the representatives very much for their evidence.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I will finish up. We heard from other organisations that are like St. Michael’s House, some of which are section 38 organisations, and some of which are section 39 organisations. The biggest issue is funding and how it is being provided annually. I presume the representatives agree that it should be changed to multi-annual funding so the organisations can plan ahead. The funding they get is not sufficient to pay for everything they provide. However, the HSE must be aware of that. Why does it not increase funding to match the year-on-year need? How does we bridge the gap?

Ms Liz Reynolds:

This goes back to what I said about how there needs to be an agreed funding model. We should all know what that model is and how it operates. There should be transparency around that model, and it needs to be flexible to respond to inevitable crises or urgent cases that can arise. That is first and foremost.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Other organisations have stated that they are almost afraid to be honest about their budgets because if they overspend, there is almost a threat made against them. They will be told that they did not manage their budgets so they might be curtailed. Is something like that happening? It sounds ridiculous. If an organisation does not have enough money to meet the needs of its service users, then they need more, once there is actual governance in place.

Ms Liz Reynolds:

Yes, I absolutely agree. As a section 38 organisation, there is a voluntary board of directors of St. Michael’s House. It is completely voluntary. Under the Companies Act and under various obligations, if we were to overspend - and we have overspent and we do overspend - not only would we have to explain ourselves to the HSE, but an issue of a growing concern would also arise and would come up on an annual basis. The expectation to have voluntary boards is not only in St. Michael’s House, but throughout the country, given the pressures and the matter of sustainability. When I speak of sustainability, I do not speak just of organisations, but of families. How do we continue with this? At the helm of the organisation there is a voluntary board and we are answerable to it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The changing need is one of the biggest pressures at the moment. There is no accountability for that and there is no flexibility around that. That issue was raised with me by Alison Harnett and others. I think the representatives said they have six special schools and one satellite school. What is a satellite school?

Ms Liz Reynolds:

It is not a school in its own right with its own board of management. It is linked to one school, but it is in a different location. It is a satellite of one particular school.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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In a discussion earlier today, we were marked one year since the report from the Joint Committee on Autism. Some of the parents raised how there is no grading and no accountability for what students with autism in special classes or special schools actually learn in school. Therefore, there is a very low level of expectation. We speak here sometimes about how students leave a special school and go straight to a service and they might be in that service for the rest of their lives. Do we need to think of better for young people? Do we need to look at more options for them? They could go straight from a special school where, as I said, there is no test. There is no Drumcondra test. There is nothing to actually say what the students have learned. There are many examples of autistic students who are non-verbal but who are extremely intelligent. The issue is with communication, but an assumption is often made that they are not intelligent.

We need to be able to address that and it will be done through communications and the use of assistive technology or other mechanisms. Does Ms Reynolds believe we need to raise our expectations for young people in special schools and look at other options rather than going straight to a service? I am not condemning services whatsoever and I know the brilliant work they do.

Ms Liz Reynolds:

We need to raise our expectations across the board. If we are here talking about rights and choice, we are talking about individuals, so it would be based on individual assessment and funded appropriately according to not only the need or the current framework but also the will and preference. That is certainly something we are all advocating to move towards.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Career guidance is not provided. Is there a plan to provide career guidance in special schools?

Ms Liz Reynolds:

To be clear, we deal predominantly with section 38 issues. There is an independent board of management in each of the schools, and it is a patronage system. I would not be an expert on the education aspect of the delivery in schools and we would be more involved in the health aspect of it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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With regard to residential services, the witnesses talked about houses. Are they all group houses or community houses, or is individualised accommodation provided?

Mr. Diarmuid Devereux:

We have a mixture of both. We predominantly have community houses.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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How many would be in each house?

Mr. Diarmuid Devereux:

It varies. It depends on the size of the house and other factors, for example, compatibility and the changing needs of people. We have a number of three-, four-, five-and six-bed houses.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Are there individual units?

Mr. Diarmuid Devereux:

We have independent living units. There are service users who are renting directly from a local authority.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Are the different houses dispersed in the community?

Mr. Diarmuid Devereux:

Yes. We are lucky that we are not too affected by congregated settings.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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St. Michael’s House does not have any congregated settings.

Mr. Diarmuid Devereux:

We currently have a congregated setting in north Dublin but we have plans to address that in the near future.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The housing situation is obviously a huge factor in that regard.

Mr. Diarmuid Devereux:

It is very difficult. The biggest challenge is trying to find accommodation. The Leas-Chathaoirleach can imagine that a community house to accommodate five people needs to be 3,000 sq. ft, needs to have significant external space and, ideally, needs to be a bungalow. Trying to find such a thing in an urban area is very challenging, as is trying to secure the funding for it if we are lucky enough to identify an opportunity.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the witnesses for attending and for their contributions. I also thank the members. The next meeting of the joint committee will be held on Tuesday, 25 June at 7 p.m.